Replies (390):
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HI Y'ALL!!!
WELCOME to Painaid!!! My name is Patty and I've been with my fellow paniacs now since the end of October...I can't say enough about how AWESOME painaid is and how much you all have helped me these past months!! I hope I've helped some of you, and will continue to do so for a long time...You all have become my family, and that, in of itself, is a very precious gift, indeed...
To any new people: All I can say is keep coming back!! You WILL find solace here...
PATTY |
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Hello PA fun!
I remember you from the old PRC! Not that we are that old.
Wonderful work that you are doing here. Hopefully I posted in the correct palce. If not please let me know. LOL! I know you will. |
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Greetings to all. I don't suffer chronic pain but I teach others how to manage their pain. I'm a coach and in my practice, I use hypnotherapy in helping clients manage pain. Regarding this group, I would like to offer some free services because I sincerely believe in helping others so this isn't a plug for my business. I would just like to offer an alternative that gives you control and leaves you with a lasting system for managing the pain you experience. Here's to a paradigm shift from pain and discomfort to better health and well being. |
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hi everyone! it's my first time here, so glad to find you all. My story, as I'm sure it is with many of you, is long and complicated. But here's the short version. I'm now diagnosed, (after 17 years of crap to get here, you know the feeling), with Autoimmune Thyroid disease, Undifferentiated Connective Tissue disease, CFS tendencies, and Painful Peripheral Neuropathy. The neuropathy being the greatest source of my agony. I can pretty much deal with the other things, but the neuropathy has been the nightmare of my life. Before I got on any type of meds for it, I felt like I was being electrocuted in my hands and feet, like there was a force field vibrating with pain. I couldn't stand anything or anyone to touch me, just cowered in pain. I'm now enrolled in a pain clinic, going through the rounds with meds. Now I feel like I have bad frost bite, a deep terrible ache that feels hot and cold at the same time. Never goes away, much worse at night. I'm disabled by it, what can you do without using your hands and feet? A trip to the grocery store is overwhelming for me. I've struggled to keep a good attitude. I have a wonderful life, I'm very blessed in so many ways. But no family or friends can really understand what this is like, how draining, just completely exhausting it is just to try and smile and talk to people at a family function. Or just to get through a "normal" day. I muddle through as best I can. I have people who love me, that keeps me going.
Goodness I have gone on long here. Anyhow, I hope to meet many of you here. I hope I can offer something to the group. Wish you all a pain free day! |
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Misbex,
Welcome to pain aid. I think that you will find great support and friendship here. This is were you can laugh and cry, vent and celebrate, share and seek support. We all understand a life in pain and we get great satifaction out of being able to share and support other on this same journey. It is very comforting to know, that if we are having a terrible day, we can come here and others will understand. No one will judge you and all will offer what ever experience or support that they have.
You are extremely fortunate to have such a loving family. Unfortunately, not everyone that comes here does. We all have our ways of making it through each day and if it requires the help of other that truly understand, we come here. I've been visiting this site, almost every day for 3 years.
Welcome on board. Hope to see you here often.
Jean |
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Thank you Jean for the warm welcome. I am very lucky, you're right. We all have our burdens..you never know just by looking at someone. So glad to find you all here.
misbix |
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Misbix
Welcome to Painaid!! You won't regret it if you keep coming back here--The people here have truly changed my life for the better...These wonderful folks DO understand what you're going thru, unlike family and friends, like you said. I hope you'll find solace here, as I have...Good to meet you!!
PATTY |
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Nice to meet you too, Patty! Hope to see you in the chat room sometime. Megan |
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Hiya misbix~~
Welcome to Pain Aid! I have been here a few years and Love it!! Maybe no one else has my exact pain, but they do understand the pain I am in. Everyone here suffers and while I am unhappy that they are suffering, I am awfully happy that I am not alone.
I too have a wonderful family and you are correct, they just don't get it.
Again, welcome to Pain Aid!!!
Glenda |
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Hi misbix:
Welcome to Pain Aid...you'll be very happy here, seeing as we all have the same thing in common one way or the other!
Feel free to trip around and make yourself at home, you'll be glad you did!
We have a daily Coffee Chat, Monday-Saturday at 11am EST in Conference Room 1. We also have Chronic Pain Chat at 7pm EST and RSD Chat at 8pm EST on Wednesday nights in Conference Room 1. You'll see the link on the left hand side of the Home Page: http://painaid.painfoundation.org/Login.aspx
Add it to your favorites as this is the start up page with all of the necessary links.
We'll all walk the pain path with you my friend.
Hugs and miles of smiles,
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
Don't walk in front of me, I may not follow.
Don't walk behind me, I may not lead.
Just walk beside me and be my friend.
Updated by PA_Gootes on 16/01/2007 12:59 |
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Thanks so much for the welcome, Glenda and Gootes! I'm happy to be here. My poor husband has been my main outlet for frustration, and though he loves me and tries to understand, I think I overwhelm him. I have been to a therapist/biofeeback doc. He's very nice, but again, he can't really understand how it is.
I've been on the rollercoaster ride for years. Sometimes I'm strong and stoic, sometimes angry, frustrated, nearly suicidal. Thankfully, more strong than not so far. But as I look forward to a life of what I know will be never ending pain, I know I need more help to deal or I won't make it.
I do have faith, and friends, and loved ones.........but honestly sometimes it takes a special understanding to comfort me. I know you all understand.
Looking forward to hanging out and learning from you. Thanks again so much for the welcome! |
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misbix,
Welcome to the greatest place on earth. I am fairly new here myself, and in the short time I have been here, I have met the most wonderful, caring people. This forum has truly been a blessing in my life. The people here, staff and members alike are all so helpful and supportive.
Take Care
Teresa |
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Thank you Teresa, nice to meet another newbie! Hope to see you around.
misbix |
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Aloha! Not New But I DO Have A VERY SEROUS Problem, Not Sleeping. I have Posted this message in the Pain Section But in case no one sees it. I have been Lowering my pump for the Last 6 Months. It has Diludid and Bupivaicane in it. It was done Very Slowly., 10 % at a Time. Over the last 2 Months or so I have Not been able to Sleep. My other Meds have stayed the same. I was on Ambien cr for the Longest time. It stopped working so my Dr. said why use it. Yesterday I went to See him and he gave me Zanz Flex 4MG to Try. he had samples. Well IT DID Nothing to help me at all. We had Discussed giving me the Extended Release but he had the samples so I did Not have to go to Pharmacy to get the Extended Release. My last MRI was Last year. It showed another budging Disc,Massive Scar Tissue, Nerve Damage, A Leason on the side of my Spine about the middle of my back,Spinal Stenosis,ETC. My Hip where they took the bone for a Fusion is bothering me a bit but I have oral Morphine for that. I have tried Every Sleeping Pill there is. I Wanted to try Phenobarbital or something like that, But he Does Not Give those type of Prescriptions out. I have been with him for 10 YEARS. No Problems what so ever. I am Going out of my mind Not Sleeping. If I do go to sleep it is just for a few minutes and I have Bad Dreams. I get out of Bed Yawning, I am so Tired. Does anyone have any Suggestions? I think it is my bulging Disc, or Nerve Damage that is causing this problem. I have NO Worries, Hardly any Pain, and if I do I have oral Morphine to take care for BT Pain. Can Anyone HELP ME?
Thank You Very Much and God Bless You All. Does Anyone Know Pharmacy Steve's Website? I would like to ask him some Questions. Please E Mail Me at: boykoalley@yahoo.com. |
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i may not be the best source of info, this is my first visit here. but i just wanted to say that i used to have really bad insomnia and it took me a long time to realise that the "feeling" i would get in my ankles that let me know i had a long night ahead of me was pain. this was long ago when i thought i was crazy, and so did the dumbfounded doctors. but still sometimes because i feel it all the time i can canfuse pain with restlessness, anxiety even. pain wakes me so gently that i often don't realise until later that it was the pain. i think (and i only know my body) but it sounds to me like you don't need sleep aids. you need to either stop weeening off the pump or substitute it for the patch or something else. i'm sorry, it sucks to be in pain and alone when everyone is sleeping . i hope you feel better soon.
mshuman |
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Welcome Newbies. Hope you find a home here. The individuals here are rare ones because each of them at Pain Aid understands pain from personal experience. It is so good to know there are others cheering us on when the pain gets overwhelming. I think of the frog choking the crane with the words below it of, "Never give up!" I would LOVE to choke our enemy known as PAIN. Welcome and very much looking forward to hearing from you. Hawaiian Bob, your Spiritual believes have helped you in many areas......I think maybe they could help you with sleep also. Try YOGI teas and relax in the knowledge that you are loved by an entity bigger than any of us could ever begin to fully comprehend......Guided Imagery works super great for me but not sure it would for you....just use what works would be my suggestion. From the Heart, Iris |
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Thank you Iris, I look forward to talking with all of you and learning, laughing, sharing, helping, and caring for each other.
misbix |
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Welcome Misbix! This realy is a great place to come to. And we all understand eachother and the troubles we all have. I have not found a person on this board that I don't identify with.
Keep coming back for more!!
Take care!
Sue |
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Thank you Sue, I'm happy to be here. Hope to see you around and chat sometime.
misbix |
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Misbix
Hi again!! I forgot to tell you--We have a coffee chat every morning at 11am EST...Just follow the prompts to the chat room--I'd love to see you there!! We also chat every WEd evening at 7pm...Hope to see ya soon!! 
PATTY |
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Misbix, It is nice to see you here. I'm sure you will like it here. I have been here for over a year and found it to be a wonderful place. A place where people understand what we are going thru. A place where I can get and give support, and help people going thru almost the same things that I am going thru. It is a place were people can give you different ideas on what to do to help you feel better and maybe you might have some ideas for other people in return. This place has been just a wonderful place for me. It has given me a new outlook on my disease process, and that I can overcome it! The people here are wonderful! The daily chat is great. It can be educational when needed and tends to give you a chuckle too. Please try to join us there. Welcome to painaid. |
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HI RSDS-RN! I think I saw you at the chat today, I hope I said hello. It's all so fast, I'm not used to that. Plus,I type so slowly. Thanks for the welcome. I hope to learn from all of you, and I hope I can be of some comfort, or maybe a laugh for some of you too. Megan |
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Hi Megan!! 
It can be so overwhelming at the beginning--I know, I've only been here since October!! The chat does go really fast, and I can't type fast either!! Don't worry, you'll get the hang of it!!
Take care!! 
PATTY |
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Hi Misbix: To stop chat from moving so slowy, there is a feature that will help~! Right click up in the box where everybodies chat shows. There will be 4 options, one which reads "Stop Auto Scroll". This will allow a user to get caught up or read if they missed something. You can even leave it on Stop Auto Scroll, you'll still see people texting down at the bottom. You can continue to read by clicking on the blue down arrow at your leisure Or right click again and go back to Auto Scroll.
Hope this helps! I'll post it as well in the Questions Answered/Off Topics area.
Again Welcome, I think you'll be right at home! Glad to see you enjoyed Coffee Chat!!
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
Don't walk in front of me, I may not follow.
Don't walk behind me, I may not lead.
Just walk beside me and be my friend. |
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Thanks so much Pa-Gootes, I didn't know this. It'll be very helpful to me. Not only do I type slowly because of my darn hands, but my meds make it hard for me to concentrate and follow the fast discussion. Your help is much appreciated, I'll try it! Hope you're having a nice, warm, quiet, and comfortable day, Megan |
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Hello, I am new to the site & was diagnosed with RSD. I'm a married 40yr old mom of 3 & stepmom of 2, sd is 15 & ss is 17, my boys are 14,13,&9. My 2 oldest boys chose to live with there dad & my new Dh & I have custody of my youngest son & his son & daughter.
I worked fulltime as a Correctional Officer for the state of TEXAS for 8 1/2 yrs. For about 10months on & off I would get this burning pain in my right hand & wrist. On March 20th 2006 I finally gave up & went to the Dr.(Why did I wait so long ?...it would only last a couple of weeks then go away...this time it didn't) My hand was on fire on the inside yet an icicle on the outside. The Doc said "Carpal Tunnel Syndrom" gave me some Anti-inflamatories & told me to wear the brace for 6wks. Thus putting me on "Light Duty". There was no such thing where I worked.
I filed for Workers Comp. because of the repetitive motion of opening & shutting the feeding slot on the doors & unlocking certain heavy doors with brass keys and went off on FMLA.
My claim was DENIED stating that Carpal Tunnel is an" EVERYDAY ORDINARY Disease".
Anyway, I was in severe pain & had to go back to the Dr. 2days later because my hand swelled, almost looking as if to explode. He set me up for numerous tests & later sent me to a Pain Mngt. Dr. & I was diagnosed with RSD.
I went through 3 nerve blocks in my upper right chest/neck area,each of which only lasted about 5days. Then later he did a neurotomy in the back of my right shoulder.When I woke up I was in a PAIN that I only thought I knew and have been everysince. The RSD had (so lovingly..NOT) moved & extended up into my shoulder.
I had short & long term disabilty with my job & the whole family was carried on MY insurance. I had enough "time on the books" to be off from work for a couple of months( while all my procedures was going on) but then I had to pay the family part of my insurance. Six months after I went of the books & since I couldn't come back to work, I was " Administratively Separated" another words I was fired because I was off on extended sick leave & my FMLA had run out. I have not worked since 3-20-06, they would let me work light duty, nor could I work while in continuos pain & on meds that take away my alertiveness. When I was let go the family's insurance was gone..they offered me "COBRA" the states alternative insurance but it costs $1,497.00 a month.
I am now unemploeyed (can't work & doctors agree) & have since applied for SSI through ALLSUP but still haven't found a good insurance comp. for me or my family.
I had our family Dr.,a Nuerologist, a Psych.& a Pain Managment Dr. Since I have no more ins. the only Dr. I see now is my PM Dr & thats once every 3mths.
Oh..I am now on Lyrica & methadone..with sleepaids,muscle relaxers & antidepressants. I was on nuerotin but it wasn''t doing anything.
But through all of this..the house & pets keeps going & most of the time the kids & DH act as though there is nothing wrong with me & get perturbed when I complain or say I can't do something. I hide it as best I can but it gets to where I just can't hide it anymore. I'm hard-headed & do my "dangdest" not to let my kids & hubby see me cry. I wait till they're gone & have me a good old fashion cry, then I'll be okay for a couple a' days. I hate this disease! I was a healthy 'Tomboy", very much an outside person. Not anymore. This stuff may not kill me, but it makes me wish it sometimes!
I have yet to see a pain-free day.
Sitting here in pain & pecking the keyboard for hours to get this...
Be Safe All !
Daizis4Me |
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Daizis4Me
Welcome to Pain Aid, you will find that this forum as the most caring people on earth.
I too am a wife & mom in pain, my pain started over 18 yrs ago, before my youngest was born. I have 3 girls, 24, 23 & 18..
Being a wife and mom are hard enough without adding in chronic pain. I wish I could tell you how to get your kids and husband to understand your pain, but that is a fight that I still not won completely. Even though my kids are grown and now know exactly what is wrong with mom, they still get cranky from time to time when I say I can't do something because of the pain.
I was one of the best hubbys on earth and he doesn't always get it either. It is so hard for someone who has never had to walk a mile in our shoes to grasp how miserable we can feel.
If you ever need another mom in pain to talk with, I'm here for you.
Take Care
Teresa |
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Hiya Daziz!!
I just sent you a welcome e-mail telling you about this thread, but you beat me to it!!
Welcome to painaid!! You will find TONS of support here--I guarentee you, you won't be lonely anymore!! Chronic pain is SO tough--I understand about you wanting to give up sometimes...painaid has improved my mental health so much!! The people here are awesome, so keep coming, ok??!!
Nice to meet you!!
PATTY |
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Dear Daisiz4m4, I understand where you are coming from. I have RSD also. I have it in both legs and feet. I am married with 4 children. My husband is very good with it and very understanding. It is very hard for the children to understand the pain that I go thru. I try my best to do all I can around the house and do as many things with the kids as possible. I always feel very guitly that I can't do more with the children because of the RSD.I have been out of work for a year now, and it has been very hard on the family and myself as well. I do understand that this can change your life in more ways than you can imagine. I have not figured out a way to get the kids to understand how the effects of the RSD are on me and how much it limits what I can do and how I feel. You can only tell them so much. There are days that they are very understanding and days that they aren't. Hopefully there will be a day that they will. |
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Daizis4Me ,
First off I want to welcome you to Pain Aid but am sorry for what you are contending with right now. I do have a question for you.
How did your PM dr diagnose your RSD?
Kristy |
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Hello all & thanks for the great welcome. Rough time with flare up & sick kids @ home, plus it takes me a while to type anything(peck),so I use my notepad to work on what I want to post, then I cut & paste it here..days later sometimes.
To answer how I was diagnosed & whats been done to me...I have been pinched & prodded..electrocuted twice...xrayed multiple times...a sonograhm of my right arm,shoulder & neck(to check for vein blockage) a 3phase bone imaging, 2 MRI's ( one just reading my arm & hand,2nd was brain,neck,spine ,shoulder,arm & hand) 3 Stellate Ganglion Blocks, & a Thoracic Neurotomy, not to mention all the blood work.
As I said it started with my family Dr. with the "Carpul Tunnel" & he sent me to another Dr to be electrocuted with lil' needleds stuck in diff. places on my hand & arm. But before I could make that appt I had to go to a Vein specialist because of the swelling & blue/ purple color. He said either "Burgess Disease" or " RSD". He sent me to a "Pain Mgnt. Dr. & the 3 of them confered with a neuerologist & thats how they came up with RSD. The 2nd MRI, 2nd electrocution(can't remember what it's called), the 3 blocks & the neurotomy all came after seeing the PM Dr. of course.
The bad thing is I only did a lil' research before I made it to the PM. But he acted as if all was Ok & that the nerve blocks would fix me right up ! I just went blindly off into this. It wasn't until after the blocks that I started questioning things & doing some research. NO ONE..not a single one of the told me that there wasn't a cure for this! I was sooo MAD. Mad at them for not telling me,mad at myself for not asking or doing any research early on. I was crying because of the pain, crying because I was made,but I cried the hardest when I seen the pictures of how it has affected others.
I have yet to show my family see the pictures or let them read the stories. Maybe I should, that might help them understand more...but then it may scare the kids too much.
It won't kill me..just make me wish it would.
Be Safe All
PamK |
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Pam ,
Thank you for answering my questions. I'm wanting to find out if I have RSD which is why I was wondering how you were diagnosed. I told my Pain Management dr not too long ago that I'm concerned about the possibility of RSD and she insisted that I shouldn't be b/c I don't have it. She hasn't even bothered to test me so I'm going to try and get to neurology to see if they can help me figure out what is going on with the nerves in question and whether or not I have RSD.
On the EMG test, may I ask what meds you take for your pain and how it affected the results of the test?
Kristy |
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I got to looking at my Rx book & I was wrong about my first visit,to my family dr. He didn't give me anti inflamitories..he didn't give me anything. I wasn't prescibed anything for pain until AFTER my Neurotomy in Sept. 2006.
So the was no meds that would have interfered with the first test. I was fully medicated( my nerve meds, pain meds & musc. relaxes & anti depressants) on the second test & let me tell you I FELT IT ALL...10 times worse, I thought I was gonna pass out & I'm sure the folks sitting in the waiting room was getting scared from my screaming.
This lady was electrocuting my bad arm & the pain was unreal.You'da thought that my screams of agony would have made her stop the test...but NOOO!
After reading what others are taking..MY dosages are really low. Lyrica is only 75mg & Methadone is 5mg..3x a day.
No wonder huh..this stuff barely takes the edge off on a good day. I asked about uping them. but was shot down. I was on 10mg Methadone..but he dropped me down talking about weaning me off of it. Don't get me wrong..I can definately tell if I miss a dose, 30 min to an hr. late & I'm in trouble.
I guess since I'm not writhing in pain on the floor & screaming my head off at the Dr.s office...I can't get a higher dose. I haven't worked since March & I can barely do the housework. My meds didn't start until Sept. after the Neurotomy. They know this..yet my PM dr. prefers to keep the doses low. I think now that I'm uninsured I will shop around for a new PM dr & Neuro...then maybe not..just pain & anger talk.
Be Safe All !
Pam |
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Pam ,
I'm wondering if my dose of the Lortab might be low enough that an EMG would probably still hurt, especially with the way my pain threshold is. Hmm.
Can you tell me a bit more about the lumbar sympathetic block as to who did it and how long it lasted for you as well as the recovery time from the procedure itself?
Kristy |
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HI Daizis4Me, welcome. I'm brand new here too, but everyone has been so kind and welcoming. I'm so sorry to hear all you're going through. It's a nightmare. I'm like you, I wanna be tough, I try so hard not to show pain. I grit my teeth around relatives and my kids, then the minute I get in the car or I'm alone, I cry and squirm. Getting harder to hide it all the time. I've gone through times when I was a total bitch for a few days cause I was so angry about the pain, about the docs who are full of crap, and lack of understanding. I'm 42, and I'm disabled by pain. I'm struggling to accept this.
I was on Neurontin too, didn't work, now ramping up on Lyrica.
I wish I had some brilliant thing to say to make it better for you. I don't. But I understand what you're going through. I'm glad I found this place and I'm glad you're here. I know these lovely people can comfort us both and I know we can help others by our experience.
Hope to see you around the board, or on the chats. Take care, dear, Megan |
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hi everyone! I'm new. Misbix reading a couple of your messages has shown me i've come to the right place, it IT IS exhausting trying to act "normal" around people who, (through no fault of their own, and with God's grace) can't understand what its like. I feel sometimes like i'm never all I am, if that makes any sense, acting like i'm not in pain is almost as hard as dealing with the pain itself. why can't we just allow ourselfs to yelp in pain when we need to instead of "saving it for later" It just makes you hate be alone even though that's where its safe to just be. Rambling, I do that when I'm nervous, tomorrow i go in for my fith set of very painful injections, a treatment called prolotherapy. I have Ehler-Danlos Syndrom, also a degenrative connctive tissue disorder. I'm 25 and am also blessed in many ways one being that i had the patience to sit here and despite my end of the day pain, check out this web sight. thank you everyone for being here. i look forward to learning from all of you and making some new friends, friends that will really know me.
mshuman |
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hi mshuman, sorry, I wasn't around for a few days, had a loss in the family. And I just saw your post. I'm happy to meet you. Glad you found us and hope to see you around. Sorry to hear at your young age you have such pain to deal with...that really sucks, hun. Anyhow, hoping you have as comfortable a day as possible, especially tonight. I'm always worse at night too, hate when 5 pm comes around. see you at chat some morning I hope. Take good care, dear, Megan |
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Daizis
Welcome to pain Aid. I wish I could tell you how to get your family to understand your pain, but unless some one has stood in your shoes there is not true understanding. I have the most wonderful, supportive, over protective, loving husbands and yet, sometimes he just doesn't get it. How can I expect that he would as he doesn't live in chronic pain. It's great to be able to tell you that the folks her DO get it. We all understand and will be here for you always. Come here and vent, cry, whine or what ever you feel you need to do and you will never be judge as each person has their own way of dealing. I can assure you, that if you can come here, you will make some wonderful friendships.
Jean |
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Hi all (and for those that know me I say "hi again" ,
I'm Kristy and I live in FL with my mom and my 16 year old Bichon Frise Daiquiri. I've been a member of Pain Aid for 3 years.
I suffer from the following conditions:
1. Endometriosis
2. Polycystic Ovarian Syndrome
3. Pelvic Congestion Syndrome
4. Vulvodynia (if you would like to know more about this pls e-mail me off board)
5.Osteoarthritis
6. Fibromyalgia
7. Costochondritis (inflammation of the cartilage around the ribcage)
8. Irritable Bowel Syndrome
9. Chronic Sinusitis
10. Generalized Anxiety Disorder
I've been contending with a newer pain issue on top of some of the other things and so am trying to find a cause for it. I don't know how long that will take to do but we'll see about the next step in the process after I meet with all of my drs (I have 3 of them at this time) this week.
Kristy |
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Hey everybody WELCOME and ((((Hugs)))) I am not feeling real great myself right now but want everyone to know how happy I am that this wonderful home exists. Newbies, may you feel particularly blessed here. Enjoy reading everyones posts when I don't feel good like this. From the Heart, Iris |
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Iris ,
I'm sorry that you aren't feeling well right now hun. I do hope that you get to feeling better real soon.
(((Hugs))),
Kristy |
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HI Iris, I'm so sorry you're hurting, hun. Me too, it stinks. I'm new, thanks for the welcome. YOu've all been so great, I'm so happy to have found you. Feel better dear. Megan |
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Welcome Daizis4Me & Misbix
I hope that what we can bring you here at the Boards and Chat room of Pain Aid is comfort, or peace of mind. The one thing that I have learned here is this: When someone asks how you are doing, they really want to know. They don't want you to smile through the pain and say " Just great" if you feel like poo-- they want you to tell them you feel like poo. It's not complaining here to tell that you are sore and tired and cranky because you are in pain; it is a place where you can let out what you truly, honestly are feeling and know that someone out there can relate to it closely.
We do a good job with helping each other through the dregs of everyday living in pain, and we do a great job with helping each other celebrate the joys, big and small, in all of our lives.
Namaste-
Dannyn |
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Dannyn, finding people I can truly tell how I'm feeling is such a blessing. I feel like such a burden to my family. I'm a downer, not on purpose, but they hate seeing me suffer and don't REALLY want to know how bad it is. Thank you all for a soft place to come and unload, and laugh, and cry, and comfort each other. Love and Hugs to all, Megan |
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I had my one year anniversity this month. I have NO idea what i would have done without this site!
When I first came here, a recomendation from a nurse friend, I was amazed. I read and read. There were people here just like me in PAIN. They were not afraid to say it. They were not afraid to admit they want to scream and pound things. That they were not heard by health professionals that were suppose to help. They were like me!
The ones that gave me sound advie to Fight the V.A. to get the care I needed are too many to list they know who they are.
If you are new here join the chats. They are a Godsend.
I recieved a terrible DX"S after a year of test and re-test, but I have a "reliable" reason they said for all my pain....Like everyone here says sometimes it doesn't come out in black and white. If you hurt you hurt.
This site literally saved my life. I was a walking time bomb according to the neruologist and my rheumy. My med's are o.k. I wish there weren't so many and That I had real pain relief. Hopefully moving to Houston V.A. from San Antonio will help.
Hugs to all Jangy |
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Jangy, I'm glad you're here. I know the ticking time bomb feeling, I think God sent me here for the same reason. I hope the move brings you some docs who will help you in a meaningful way. Praying for you, and here for you, Megan |
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Okay, Some of the people here know some of the pain issues that I live with on a daily basis, here is the full scoop.
I have Bertolotti's Syndrome, which is a extreamly rare birthdefect of the lumbar/sacral vertabra.. my bones are fusing on their own. It has cause Cauda Equina Syndrome (CES) which causes pinched nerves of the Cauda Equina, which is a bundle of root nerves at the Lumbar spinal region. I also have Spinal Lumbar Stenosis, and Psuedoarthrosis of L5-S1 Facet joints (yeah a broken back that never healed). So basically all (almost) my chronic pain is in my low back, the rest of the pain comes from progressive ulnar neuropathy, which the doctors have not figured out what caused the ulnar nerve to swell and crush itself in the ulna canal (had a ulnar nerve transreposisitioning back 2, Dec, 98)..
So yeah, basically I am a mess..
I take 25mcg/hr fentanyl q 48 hours, BT meds are of my own choice (I get enough to last a month if I choose one over the other), oxycodone 5 mg 2-4 q 4-6 hr prn pain, Norco 10/325 2-3 q 4-6 hr prn pain. Then I also have Toradol for IM injection (but I only get 10 doses for the month).
Becca
purple_flutterbys |
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oh and I forgot I have arthritic degenerative lumbar syndrome.. basically my lumbar bones are fusing (bertolotti's) but also degerating (arthritis) |
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i'm sad when i read your message, not neccisarily because of your diagnoses or your pain meds but because i can feel your anger. i'm way new here, but i can feel your pain and desperation in your message. I'm happy you came here, i think you will get alot of help from people much wiser than myself. I will pray for you tonight. you are not the only one or the who's life sucks the most. one thing my mother taught me (she's had a bunch of spinal fusions and a broken leg that broke again when they took cast off, it never healed} she taught me when i was still in my angry state (which i return to from time to time) I would scoff at people who would complain about what i would consider minor pains; she showed me that each of us have our own pain. we can't know how it feels to not be in pain most of the time and then suddenly sprain an ankle for instance. we'll never know what someone elses pain feels like, we need to learn empathy from our limitations. gees sorry i got preachy there for a min... anyway that fentynol patch is great isn't it? it really helped me for years, your lucky you have another couple levels you can go to when your tollerance builds. they really hurt my skin though, left big red lines. anyways i know how it feels to be in so much pain, its almost like the steps of mourning; which makes sense we do mourn the loss of our old freedoms; rambling again... my point is we start with denial, which for me was pretty bad because i thought i was crazy, and some day we end with acceptance. not to say we don't revert back, sometimes i stop all my meds to make sure i'm really in pain, now that's crazy. especially because i'm still in pain on the meds. i'm done babbling now hope something i've said rings true to you and i'm here if you want to talk or rant and yell i can be angry with you if you want, you are entitled to feel how ever you feel.
mshuman |
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Every day we struggle through with pain we have made a great stride forward.....We are in the Pioneer Age with the light just being turned on after emerging from the Dark Ages. When we hurt, it helps to know there is light at the end of the tunnel. May all you newbies find your home here and be assured that we love you and welcome you with open arms. Part of the disease process is reflected int he way we think...ie..."I am the ONLY one going through this" and that just isn't the case at all. We are all family here joined against the fight of Pain. Love to All, Iris |
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Really glad I found this site. I am hoping that someone can diagnose my problem. I have lived with this certain pain for the past seven years. It is deep in my right side between my ribs and hip bone. It hurts when I lie down. I am unable to sleep on my right side. After I have been asleep for several hours, I am unable to turn over. Its as if my right side is broken and paralyzed, however, the pain is awful. I am unable to get out of bed. Once my daughter helps me out of bed, after about 45 minutes, I am able to move about. During the day, it is a soreness. The minute I lie down, it hurts. What is this? |
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For a diagnosis, you must go to your doctor. All you can get here are, at best, guesses. |
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Deleted User
Momglenda is right--You really should see a pain Doc, or at least start w/your PCP...
What we CAN offer you here at Painaid is support!!! Tons and tons of support, love, empathy, and compassion---I've learned that you CAN'T do it alone, and painaid has fit me like a glove!!!
Keep coming
PATTY |
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new here ! replied to a message but i wanted to make sure i introduced myself as well. My name is Melissa and as the rest of you I live in chronic pain. I have EDS Ehler Danlos Synrome, a degenerative connective tissue disorder. i am 25 and disabled by my pain and my joints which are starting to give out on me completely. I was lucky enough to be diagnosed at nineteen after only six misguided ankle surgeries. ok so i guess that sounded sarcastic. but really i am lucky, this past year 06 I found a doctor who believes he can help me! like to get better, not just "be more comfortable". wow how many of you have heard on a regular basis, "you are just going to have to come to terms with the fact that I can try to make you more comfortable, but you are going to be in pain for the rest of your life, no drug will take the pain away, they just make it managable" ok so maybe not verbatem but i imagine a lot of you heard this (gee i hope i'm not the only one tee hee). And although I had come to terms with that fact, to hear it out loud was like being stabbed. i was reading someones story "voices of people who live with pain" or something to that effect and she said she just didn't have the strength to hit her doctor. I can totally relate. and what good would it do, you'd have to tell your whole medical history to some other doctor who will look shocked like he's never heard of anything like this and question your pain meds and its just exhausting. that's how i feel tonight. not tired just exhausted. prolotherapy is the treatment and I go for my fith round of injections in the morning. hope everybody has a better day than me tomorrow. i prob won't be back around for a a couple days, ooc out of commision. but i'm so happy to have found you all and i hope i will be a welcome edition, wow where did my self confidence go? anyway thank all of you for being strong enough to not have given up. i know you will give me strength.
mshuman |
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Welcome to Pain Aid. I love to hear good news, so thanks for sharing. I went through I time when I never thought I would improve and then I was given the intrathecal pump. I'm blessed as it controls the pain so much better.
I guess it is important to remember to never give up.
I look forward to seeming you here, often.
Jean |
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Melissa ,
I wanted to welcome you to Pain Aid. It's such a great place to get support from. I'm a bit familiar with EDS b/c of a program I saw on the subject a while back on Discovery Health and they talked about the daily struggle that those such as yourself go thru on a daily basis. So with that I want to give you a (((hug))).
As for drs, it is true that it is hard for some of them to understand how difficult the case can be. I'm finally running in to this with my Pain Management dr even though I warned her about this a little over a year ago when I asked her for her input on the name of someone who was in the specialties that relate to Primary care that I might be able to try for. I thought I found someone to help me out but a couple of things happened just after one visit that I thought, "no thanks" and never went back.
I look forward to hearing from you again as soon as you are able hun.
Kristy |
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Who in the world is "deleted user"?????? Please someone help me know WHO this person is.....My brain is not quite sure how to respond to this one. Thanks, Iris |
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Iris,
We're waiting to hear back from the IT guys on the Deleted User issue. This happens on occasion even though the User is not Deleted.
We'll get this worked out as soon as possible. In the meantime, I just make sure to sign my name at the bottom of my post in case something happens.
Thanks for your patience while we work the bugs out of the new site.
PA_Caroline
APF/PainAid
Board Team Leader |
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I am new to this forum. Let me introduce myself. I sure could use the support from others who understand the chronic pain issues...I have fibromyalgia and chronic migraines due to a congenital brain condition which caused a cerebral brain hemorrhage in 1992 which required brain surgery to repair a ruptured aneurysm and resulted in complete disability. Because of the aneurysm clip I am unable to treat my migraines with the most effective medications like Imitrex and Cafergot and have become dependent on Midrin and Vicodin for several years. I am a sober alcoholic with 27 years of sobriety which makes this whole picture challenging. After developing a frozen shoulder and a regular pattern of going to the ER for morphine or Toradol shots to break the migraines I finally found a doctor who asked me the $64,000 question: "Have you ever been referred to a pain clinic?" Last summer I was and was put on a 50mcg Duragesic patch. I had an episode of low (50/30) blood pressure due to dehydration and ended in the ICU after surgery in December because of adverse response to anesthesia (low bp again) and decided to detox because I was having horrific nightmares on the patch. Well, once I was off the patch, I resumed daily migraines, so my current regimen is a 25 mcg patch with 10/325 Vicodin for breakthrough pain. So far no nightmares.
The worst part of the pain I think is the emotional isolation. I mean, the feeling that I'm doing something "wrong" by "taking drugs" (strong ones) to treat it. Sometimes I think I'd rather wear a cast on a broken arm than have to say, once again, I have (another) migraine. Sorry to vent, but I guess this is the place if there is any place that would understand...
I mean...it's like unless you have this pain problem yourself you don't really understand. I'm a Christian but I'm hiding the truth of it. "It" being the disability and need for pain medication. I'm a sober alcoholic but I'd never disclose my need for narcotic relief to others at meetings. I'm okay with it, but there's always that lingering feeling that there's something not acceptable about me. Do you get what I mean? Even Jesus, when He was offered gall to drink on the cross to ease His pain, he refused to drink it. My Pain Specialist understands but my Primary Care Physician is not in favor of using Fentanyl or even Vicodin but he will defer to my Pain MD. |
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I have what is called burning mouth syndrom. It started two years ago J(April 07) I have seen a Periodontist, a oral surgeon, and 2 dentists plus a dermatoligist. I contacted Mayo Clinic in Jacksonville Fla and was told I would need to go to Minn, or Ariz clinic. My lips and upper front gums are red and painful and my toung started bothering me Aug 08 and now I have noticed a strange taste when I lick my lips. Sort of bitter. Bakeing soda seems to help some and avoiding acidic foods. No one seems to know anything about this condition except that it seems to be more of a problem for older women. Im looking for information . |
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Dear Hopeful,
Welcome to PainAid! I haven't heard of this condition, but it certainly sounds painful. It's possible that the Nurses (in our Nurses Corner) or one of our experts can assist you with information specific to this disorder.
We have a lot of helpful information here about pain in general - which we all seem to face similar challenges regardless of the cause of pain -- plus - just a great support system of people who truly "get it".
You may also find our publications helpful. Here's a link to check those out as well. http://www.painfoundation.org/page.asp?file=Publications/Index.htm
We're glad to have you! Welcome aboard and we hope you'll join in on the conversations.
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hi all! My name is Anne and I am 45yrs old, married but no kids (long story)....unless you count my 4 cats LOL!.
I have been a registered nurse since '87. I worked mainly on oncology floors. I fell into it one day and now I can't leave! Anyway, I have done alot of lifting and pulling on people. What really did my back in was catching a woman who was significantly taller then me in a faint. She fainted right into my arms! I kept her from hitting the floor too. It happened so fast too. It felt like hours before a coworker got a chair to put her in to. I don't remember hurting at the time but i probably had a little adreniline rush and did not feel it. :p
Anytime I worked after that my back would just kill me by the end of the day. At that point I realized I could not be a bedside nurse anymore and entered grad school to become a nurse practitioner. I work at a comprehensive cancer center in Ohio now and Love it !
My injuries are facet syndrome from L3-S1 and because of that arthritis, and sacro-illac syndrome bilateral, along with myofacial pain. Even though I have all these conditions I still work for 2 reasons: 1)until my hubby makes it in the real estate business and 2) my own mental health, I am very afraid if I want on disability I would become severly depressed. Oh and another reason : I like food on my table and a roof over my head
Rooney |
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Ann,
Welcome to Pain Aid. It seems like I have read of so many nurses that are in pain. I sure can understand the reasons.
The hardest part of my pain journey has been having to stop working. I went to counseling. I would go home from work in tears everyday and I still coundn't seem to quit my job. I didn't know what I would do with my life. I have now been out of work for 6 1/2 years and I have learned to adjust. It was not easy and it did take some time, but I am a happy person dispite my disabilities. (oh, how I hate that word).
Thanks for introducing yourself. I hope that you come back here often. This is a wonderful group of supportive, understanding people.
Jean |
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Hi, my name is Lisa. I have an as-yet-undiagnosed pain condition that is presenting as a peripheral neuropathy with tingling and pain in feet, somewhat less in hands, and occasional burning or hot sensations up my legs. I am 46 years old, married mother of three (4,4,7). This pain has been going on for about 4 or 5 months. I also have fatigue, and some other odd symptoms like nausea that comes and goes. Pain/tingling/itching at night frequently disturb my sleep. Bloodwork so far is negative. I do not have diabetes or any other obvious cause.
I am scheduled for an EMG in a month (saw neurologist finally last week). I would like some advice about the EMG--can it cause more damage? Should I ask my doctor for some pain med ahead of the EMG? The neurologist offered neurontin but I am concerned that it will make me too drowsy to work, and since I would need to take it for weeks leading up to the EMG I'm not sure what to do.
I am frustrated and scared. Would love any suggestions, tips, etc. Many thanks.
--Lisa |
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Melissa, APF2007, and Lisa:
Welcome, welcome, welcome!! keep coming back--painaid is the greatest place on earth!! You will find TONS of support here.!!!
Anne
It's so nice to see you on this board!!! You are such a welcome addition at chat in the morning--I just know you can help on the boards, as well. And we can help you!!!
PATTY |
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Lisa,
Welcome to Pain Aid.
From my personal experience, I would say that you would not need to take any medication for an EMG. It is slightly uncomfortable, but nothing compared to the pain that I was living with at that time.
Hope to see you here again.
Jean |
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Welcome to all the new folks!! This truly is a great place to find support and ideas. No matter where your pain is, it's still pain, and we all understand.
Take care,
Sue |
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This is the first time I put a message on this site, I have been reading and just learning the way around. I have had back pain for over twenty years, with no help from any doctor. I took BC powders to ease the pain, so I could work. After many years I started to bleed and that led me to have two heart attackes and a enlarged heart. To make a long story short, after the heart attacks I was led to a Doctor that started me on a pain program and life is much better. The reason I join the APF is to tell other people that their is help out there and there are doctors that care about the way you feel and the pain you are having. The Ameracan Pain Foundation is the first place I found that really seems to care about your pain. Thank you,
MasserD |
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Welcome Masser!! We, all of us, need to hear of success stories!! It is good to see someone who has had good luck, like I have, join us here!!
Glenda |
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Dear Masser,
Welcome to PainAid. You are absolutely correct. We do care. We understand and want to help, so I hope you come back here often.
BTW, I have suffered with lower back pain for almost 11 years. I'm blessed to have found a great doctor almost 6 years ago.
Jean |
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Hi, my name is lindsay and i've been having problems since i was 15 so about nine years. I had several knee surgeries and now have RSD. My knees hurt no matter what i try to do but the real problem now is hip pain. I can't sleep at night and I can't study as well b/c the pain is getting worse. OK, enough about my pain this is who i am. I just graduated with a BSW and just passed my boards and i got a great job and start grad school in May to get my MSW. Life is finally coming together. Unfortunately(back to the pain issue) it is limiting the jobs I can accept. I don't know anyone else who is in physical pain so it's such a relief to have someone to bounce ideas off of and to see what does and doesn't work. More importantly it's nice to know that someone understands what's going on. |
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Lindsey,
Welcome to Pain Aid. This is such a great sight to have found. You will find it hard to believe all of the support and understanding you will find here. Hope to see you here often.
Hugs,
Jean |
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Lindsay ,
Glad to have you on Pain Aid although I'm sorry about your struggle with RSD. We have an RSD board on here too if you are looking to talk to others who have it. I'm in the middle of a search to find out if I might have it as well b/c of some symptoms I am having and also the fact that my fibromyalgia and osteoarthritis put me at risk for it as I discovered from the research that I did just recently. So I have an appt set up with the neurologist to check the nerves to where my pain situation, especially of the last 3 months has been so we can see what's going on.
Pls feel free to e-mail me off board any time at: sokokl@yahoo.com
Take care Lindsay and look forward to hearing from you again soon.
Kristy |
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Welcome Newbies.......I think you have just opened the door to the light of love when you came to us here. What a beautiful group you will find here. Such loving and supportive people....and you know, there is nothing like finding individuals who "have been there/done that/still doing that" when it comes to pain issues. So GREAT to see everyone. Sending love to all, Iris |
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Hi Folks,
I hung around and read posts for quite a while before jumping in.
I just hoped someone would ask a question I wanted answered.
Finally realized talking is part of the program. Get with it Nan,
So I sure did.
I sort of turn up everywhere. I have so much saved up inside me.
I was injured in a fall. Had an anterior thoracic vertebrectomy.
Means the fall shot a piece of my L1 vertebrae into the spinal cord where it was impinging the Cauda Equina.
They had to go in the front because of the nature of the injury.
Ribs were spread. no. 10 was harvested for donor bone used to help my fusion.
The discs above and below the L1 vertebrae were also removed. A lovely blue (well kinda silver) titanium cage, some screws, lotta rib, donor bone and I was straightened up.
Pain didn't resolve. Cauda Equina was compromised with no sort of treatment for 5 months before surgery and just never got happy.
The rib to hib and abdominal area on the donor site are where major pain issues seem to yell loudest.
I'm straight and can walk. Very fortunate as I have really seen the roads some people must take.
I really get comfort here and hope to give back.
Three adult kids, sweet hubby, darlin grandbaby, puppy and cat.
Mountains to look at every day.
Nice to meet you all,
Nan |
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Nan ,
It's nice to have you here but I'm sorry about your situation. I always enjoy reading your posts, especially about your puppy dog. Pls give him a hug fro me.
Kristy |
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Nan;
So glad you are here. You are right Talking is as much a part of this site as listening, although some are so sweet and helpful with thier listening ears.
I am sorry to hear of your Pain. I too have some pain at my harvest site...the pelvis bone...doc's say there is a jagged edge, but souldn't have pain there. I have others that hurt more...so...
I envy your view of the mountains, although I am on the coast of Texas and my views are different though lovely.
Take care and feed some birds this spring and think of me.
jangy |
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Aww Kristy,
Thanks for thinking 'bout Remy. He is part of family now, and they all help me so much. I am still a doofus about the formatting bit, but appreciate your attempts at clarification.
Jangy,
Coast of Texas. Well, being a born & bred Texas girl I gotta say I love the coast. Whitest beaches anywhere around.
So fun to meet folks here.
We all 'keep on truckin'
Bye, see ya' at pets Kristy. Really love that page.
Nan |
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A GREAT BIG PA WELCOME TO ALL OF YOU !!!
APF2007 , mshuman , ltcgoodman , MasserD , bamabelle , rooney rollercoaster2 and mixbis and everyone new .
Being in pain is a very loney life . I was in pain for about 8 years before i found the american pain foundation and Pain Aid this site . What a happy day in my life . I hope in your life too . It is such a wonderful feeling to talk with people who get it . I didn't even know about the disease chronic pain or that was what I have . I have been very lucky to make many
friends here . I have been through a lot and my friends have stuck through me thick and thin . It takes a lot to process 8-9 years of chronic pain . I have been able to do a lot of that here with my friends . It's better and cheaper too .LOL .
You will find this a very safe place to vent and to talk about your hopes and fears . We will laugh and cry with you and for you . We will understand when no one else has or does . We will share what has helped us and what made things worse . Most of all WE will GET IT and listen when no one else does .
Roo (Ann ) I am glad to find out a little more about you . I didnt realize that you were still working . You go girl . I understand just how hard and trying it is to keep working . Like you said you have to eat . I am sure your deep love for your job patients keeps you going too . We can only will ourselfs to do so much though .
Rollercoaster2 ,(nan) we have had a little bantering going back and forth that I enjoyed very much . The CD is still avilible LOL . Your out look is amazing . I would love to learn how to meditate like you . I would love to hear more about injured lady in your happy place in your mind . Especially on the writers folder . I hope that she finds her way . I bet that she will from the help of the others in the well place that you have created . Awwwwww a grand baby . I just know that grand baby makes your life better .
Apf2007 Migraines how I undrestand those unfourtunatly .I am sorry that clip makes your migraines so hard to treat . I have had them since a teen . Not just a couple of times a moths back then either . I just got rid of almost 2 years of migraines thanks to a wonderful physical therapist who moved my legiments and tendons on my vertabra helping me to move my neck more than a few degreeses and My MT who has been a godsend . Most of my headaches turn into migraines if I dont treat them early . My insurance only allows 6 triptans a month . I am sorry that you can not use any of the abort migraine meds . Most of the time it takes both pain killers and triptans to get rid of one . When people would see me all grey and kind of green they would say " I am sorry that you have another Migraine " . What I hate worst of all besides the pain , the throwing up , smells , food and bright flashing lights triggering them . also when someone told me that they had a bad headachea lot of times they would follow it with "i know that my headaches/migraines are not as bad as yours . I always told them pain hurts no matter who has it . I would finish by saying " your headaches hurt you just like mine hurt me " .Pain is Pain ..... My Mt and neck stretches has taken my headaches doen to most of the time 2-3 a month . Unless I have a bad flair with my neck like now ....
Bamabelle , Lindsey , It sure is not easy to go to school with pain that's for sure . I sure hope that you are able to find a job doing that you spent many long and painful hours and years studding for . I think if you managed to finish school in pain that you will find a job just right for you . With the screen name of bama / belle i have a feeling that you are from the south . Maybe going to school in Alabama .....
MasserD . Man I am sorry that BC powdera hurt your stomach and heart leading you to many serious health problems . I am glad that you found someone to treat your back pain serious and is treating the way that you deserve . Spreading the word of hope is a wonderful reason to join . Just dont for get that you need friendships a long the way .....
ltcgoodman Lisa . An Emg is uncomfortable to me but not painful to me . If motrin helps with your pain maybe that will be helpful before the test . Maybe even a vaiium would keep you calm ask the dr. I am sure that he will tell you that it wont hurt . It does not cause any damage that I know of . Nurse Icedrop under the nurses corner can explain this very well . The Dr. will put very thin needles with an electrial impulses along nerve pathways most of the time in your arm/arms and/or leg /legs . It will make your muscles jump and twitch . If they hit it just right a part of your body will jump . I believe peripherial nurpathy is very hard to pick up . If the emg does not pick it up . That does not mean that you dont have it . I have read that you have to have PN for a long while to be able to pick it up on an emg . Are your symptoms one sided ? The dr. also places needles on certain areas that measures your muscle activity . I am not a medical person just some one who has had a couple of them .
This is getting long so I will start another post right under this for you mixbis and mshuman .
Take care all and I hope to see you all around the boards .
Dre' |
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Welcome , welcome , welcome Daisy 4me , mshuman and mixbis ,
Mixbis wow thats a lot of years in pain . Pn from what I understand is very painful . It seems like a lot of us have many different things to deal with . I think that is a part of the chronic pain process on the body . I know how hard it is to try and stay positive especially in front of others . I am so glad that you joined us .
Daisiz4me ( Pam ) . Man Rsd must be aweful . I am sorry that your husband does not understand . That only makes things worse for you I am sure . I hope that he helps with the kids / That's a boat load . Sometimes men get frustrated that they can not fix us and that comes off as they don't care some times . You came to the right place for understanding . We have a very awesome RSD board . I am getting ready to apply for ssdi myself but can not find a lawyer who with take a case at the start only after it has been denied once or twice . Do you like allsup? Kristy suggested that to me . It almost sounds too good to be true . I am just going through turning my emotions back on and have had a rough time crying is something I have done that I hadn't in a couple of years . Some one on this site suggested that it was good for our kids to see us cry so they know that it is an acceptable thing to experience . I wish you all the luck applying for SSDI .
Mshuman I have heard of prolotherapy . Isnt that when ther inject something to cause imflamation that makes more tissue grow around the area or something like that . I have heard that the injections are painful . UGH sorry , I hope that the injections went well and you have some positive results from them . The APF this site pain aid has just put out some good info on EDS have you seen it . I think it is on our sign in page . I will look up the page and put it up here for you if you want or have not seen it , just let me know . Someone that works at the site has done something with it . Conective tissue disease and underactive thyroid not to easy to deal with either I am sure .
I am so sorry if I missed anyone that signed on here . I did not mean to if i did . I also hope that I didnt get anyones story mixed up . If I did I appoligise . It is getting real late and i have been working on this for a couple of hours . I just wanted to make sure to welcome all of you new guys to the site . This is an awesome place that I am sure that you all will fit right in . I hope to see all of you around the boards when you can .
With warm regards to everyone ,
Dre' |
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Thank you Dre, nice to meet you. |
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APF2007, MasserD, Itcgoodman, Bamabelle & Mshuman
I want to Welcome you to pain aid, this is a wonderful place, everyone here is so kind, caring & compassionate.
If I missed anyone, please accept my apology. I have not been able to keep up with all the threads for a few days, been busy with illness in the family, so I am trying to catch up tonight.
Take Care
Teresa |
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For the new-comers, I want to introduce myself..
My name is Teresa, I live in WV, 43yrs old, married, 3 grown daughters, one grandson, one granddaughter(deceased) and I have, Degenerative Disc Disease, Sciatica, Neuropathy, Osteoarthritis, RA, Arthralgia, Sjogrens Syndrome.
Pan Aid is truly the best place on earth, It has been my honor to meet so many wonderful people and to have made many new friends.
Take Care
Teresa |
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Hi all! I live in Houston, Texas and suffer with abdominal adhesions, or scar tissue that causes partial bowel obstructions, a LOT of pain, nausea and vomiting. I've been in pain management for about a year and a half now, and the fentanyl patch is the only reason I'm walking around these days. I've also been seeing a pain psychologist, and much to my surprise, therapy has helped almost as much as the drugs. Who knew? :-) If anyone ever wants to email privately, I'm at JenBayles@houston.rr.com. |
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Hi folks, Im up here in the artic thinking I was all alone till I found this site. I'll just jump right in and tell whats got me down. I was born with scoliosis, worked for thirty years as a carpenter and finally my back decided it wanted no more of the fun life - I've got multiple herniations and bulging disks along with some that are now fused, on thier own accord, and int he last couple years developed severe pain down my left leg due to some compression at L5-s1. Now both legs hurt and my quaility of life aint what in used to be. Maybe the quaility is still there but the quantity is sure reduced. I eat a lot of morphine and am trying to get SSDI. I have been looking for support groups and finaly found APF thank god. I need to share and vent and somtimes just forget this pain for a while. So where do I find the chat room I four hours behind the east coast so when its noon in new york I'm just getting out of bed in alaska (I wish). But I'd like to listen in and get to meet some of you. I know when I tell you how cold it gets here you'll think I'm crazy too, not yet- but soon....... |
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Welcome Fairbanks
we also have a chat on wednesday nights
it starts at 7:00 pm eastern |
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Hi Fairbanks, glad to meet you. Sorry to hear you're in such pain, sounds awful. I know coming here has been a comfort to me, I can't get out much either. You'll make many friends here I'm sure.
Hey, do you see the northern lights where you are? Can you hear them?
Hope to see you around, Megan |
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You can see the lights if you want to stand out there at thirty below (not all the time ) I heard em on a real quiet nite when I used to run dogs (mushing) but not very often |
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You can see the lights if you want to stand out there at thirty below (not all the time ) I heard em on a real quiet nite when I used to run dogs (mushing) but not very often. E-mail me I'll tell you all about them jz960@alaska.net
Fairbanks |
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Name: David
Age:29
Pain: 14 years constant unexplained jaw pain
Occupation: Physics grad student
Wife: 1 (I can only handle one, hehe)
Cat: 1 white balonese mix named Blue (for her eyes)
Fish: 1 blue male betta named White (for irony, my wife's idea)
Favorite Movie: Incredibles
Favorite Ice Cream: German Chocolate Cake (from Coldstone, they spell it differently)
Favorite Pizza Topping : Meat lovers (pepperoni, if only one topping)
Favorite Bible Verse: James 4:17
Favorite Fruit: Mandarin Oranges
Favorite TV Show: Heros
Favorite State: Texas
Favorite Restaurant: HuHot
Favorite Math Mistake: Dividing by Zero
Favorite Starbucks Drink: Grande Hot chocolate sub Rasp shot instead of Vanilla shot. half white chocolate, half dark.
Favorite Tea: Tazo Wild Sweet Orange
Favorite Movie quote: "Kitty"- Monsters Inc.
Favorite Hymn: It is Well |
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Welcome David, wow, that's a lot of info about you, lol. Have you been to many docs about the jaw pain? What do they say about it? Are you taking meds? I'm sorry you have to deal with that, must be maddening. Have you had your wisdom teeth out? Just curious. Hope you'll come back and talk with us, and hope you'll find some answers and relief. See you around, Megan |
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Hi New Pain Sufferers: Welcome to Pain Aid, the best place on earth! So glad you've found us! We all walk down the same path and sometimes it's just no fun...but to know that there are others out there that feel the same way can be a real comfort and support. I've been missing myself lately, but I was lucky enough to find myself again, LOL! GPS's are a good thing!
It is hard to have an optimistic view on life sometimes, we hear that loud and clear. Pain is a tough one to wrap your head around, so when like minded and afflicted people come together it can be a really good thing!
We have a daily chronic pain chat: Monday-Saturday 11am EST. in Conference Room 1...link on the left when you sign in.
There's also a chronic pain chat Wednesday at 7 pm EST. in the same conference room 1. We're all here for the next guy so if you have the time, we'd love to have you join us!
We welcome you, cruise around, get as comfie as you can, LOL, and enjoy yourself...make new friends, share your joys, sorrows and pain with the next guy.
You will all add a lil ray of healing light to Pain Aid!
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
Don't walk in front of me, I may not follow.
Don't walk behind me, I may not lead.
Just walk beside me and be my friend. |
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Hello everyone,
My name is Shana and I'm a 21 year old Veteran who has just found this community. I suffer from a service connected lower back injury. My pain radiates down my left leg leaving me with pins and needles in my left foot. This has been a chronic problem since I fell in boot camp when I was 18 but I am having an acute flare up this past week that is being extremely debilitating. I'm so glad to find this community as I often feel very alone with my pain issues.
Shana |
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Welcome Shana, first, I thank you for your service, dear. And I'm so sorry to hear your hurting. You're not alone, there are many, many kind and generous people here to talk to. Please come back and share with us, we're here for you. Megan |
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Shana
Welcome to pain aid, from here on out, you will never have to feel alone again, we are all here to support each other, and you will meet so many wonderful, compassionate, loving people.
I would like to also thank you for your military service, hang in there, and come back often.
Take Care
Teresa |
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Hi Everyone! Since I've been MIA from Pain Aid so long, I think I'll re-introduce myself. There are so many new people here...Welcome!! This is the best place to come for support, knowledge, friendship, advice...to name a few!
My name is Denise, I live in rural Indiana, 41 yrs. old and happily married (just celebrated #20 on Valentine's Day!!), with 3 children...girl 16, boy 12, and girl 7. I have been a pain sufferer for about 6 years now. I was dx'd with Thoracic Outlet Syndrome, with compression of a blood vessel, about 5 years ago after having two shoulder surgeries. I also have two bulging discs in the cervical spine and scoliosis of the cerv. spine. I have flares of sciatica from SI joint dysfunction, occassional flares of tennis elbow, and arthritis in my knee. At least the plantar faschitis is under control now! I've been tested for Rheumatoid, Lupus, Gout, and Pseudo-gout. All results were negetive. When taking medical lab techiniques in school last year, we did sedimentation rates using our own blood...mine was 21, which is considered to be an indicator of unspecified inflammation. My doctor is thinking more and more that I could have Myofascial Pain Syndrome. So that's my pain story. Even though I suffer, I tell myself that it could be worse. There are many others that suffer way, way more than I do.
I just recently obtained my Associates Degree in Applied Science for Medical Assiting, after the closing of the factory in which i worked for 15 years. That closure was my little blessing in disguise because I truly believe that all the repetitive work that I did, was what caused me to be in so much pain. Since the factory closed and went to So. America, that enabled me to go to college full-time for any two-year program of my choice....all paid by the government. I'd have to say that it was probably one of the most difficult things I've ever done in my life after being out of school for 20-some years! I don't know how many times i wanted to quit, but i hung in there and made it! Some amazing people here at Pain Aid really supported me a lot, so between that and the support of my family, I made it through. I just wish I could find a job for what I went to school for!! 
Well, I think I've covered almost everything....Hey, wake up!! I didn't mean to make you fall asleep!!! LOL My eyes were even getting heavy!
I hope do get to know you all more here! I really missed not having time to come visit Pain Aid because of all the homework and studying I had to do. Wishing you all low-pain days ahead!
(((hugs)))
Denise |
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tootsilu
Denise, it is so nice to meet you, I have only been here a short time, but everyone has made me feel so at home, that I feel like I have known most of the people here all my life.
Congrats to you for going back to college, you should be very proud of yourself.
Take Care
Teresa |
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Teresa,
Thanks for the congrats on completing school!
It's nice to "meet" you as well! Hopefully I can get to know you better over time. Yes, they do make people feel very welcome here! It's an awesome place! I guess I forgot to put in my post that the people here at Pain Aid have helped me through some rough times, given me some great advice, and made me laugh when I was down in the dumps. Guess that's what always draws me back here. I think someday I would like to volenteer, but don't know exactly what area would be for me.
Take care, Teresa, and hope to see ya 'round the boards!
Denise |
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My name is Kris. I'm 48 and reside in SW Florida. I'm a rather new member. What a great support network. It's comforting to know am not alone with your pain and I have already found many great ideas within APF to help me cope. I have just recently beeen diagnosed with RSD. It took 2 1/2 years of pain management at a clinic that did nothing but mask the pain with drugs. No test - no alternative ideas. Don't get me wrong....the drugs are necessary, but I needed to find HOPE. Well I finally made a switch to a new Pain Doctor. It's the smartest move I made since the onset.
I have suffered since the last of my 11 foot surgeries in 2003. Since then I ruptured my rt ankle from losing balance while trying to get around without my cane. I am finally getting around again...all-be-it limited. For years the 1st Doctor siad it was Nueropathy (diagnosed without any testing). The surgeries were for Neuromas and stump neuromas. I also spent 1 month hospitalzed for a post op bone infection in the rt foot. To add to this all I took a preety bad lightening hit leaving some nerve damage to my left leg and arm a few years ago. Considering the odds I play the Lotto at least once a week! Anyway....Next week I am scheduled for a Lumbar Sympathetic Block. I am curious to find out if others have found relief from this procedure and if so, for how long? Also..is the procedure very painful? Any replies would e greatly appreciated. Thank you, again, for being such a diverse and informative group of caring people.
sincerely, Kris |
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Hi Kris and welcome aboard!
We're glad you found us and hope to see you around often. My heart goes out to you for your troubles! We hear you, we believe you, we care about you.
You may have already posted to our expert podiatrist, Dr. Elliot, but if not he has his own board under the Ask the Experts forum. He'd be glad to hear from you and will be able to answer lots of questions regarding foot pain.
Hope is the thing with feathers
That perches in the soul
And sings a tune without the words
And never stops at all.
~Emily Dickinson |
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Thank you for such a warm welcome and the suggestion to consult with Dr. Elliot. I'm so glad to have found you all! |
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I just wanted to add my welcome, too and to encourage you to check out the RSD discussion board (if you haven't already done so) where you can connect with lots of other folks who have RSD.
Welcome to PainAid!
PA_Caroline
Board Team Leader |
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Hi Kris, and welcome.
Sounds like you have your share of burdens to bear! I hope that Pain Aid can help you shoulder some of those, and lighten up that load, at least a little bit.
PA MaryAnne has already mentioned Dr Elliot, and PA Carolyn has mentioned the RSD board-- so I would like to share with you something that is lots of fun: our daily Coffee Chats. Each day, at 11 am Eastern Standard time, in conference room One, lots of people gather to just chat with each other. We talk about all kinds of nonsense for the most part, just to connect with each other, to check in, to make each other laugh, and to offer support. If the subject needs to be serious, we can shift gears and handle that as well! Please join us if you can-- oh yeah, we have a chat at 7pm Eastern on Wednesday nights too.
As for Lumbar Sympathetic Blocks-- I had my first diagnostic one for my RSD a few weeks ago. It worked a little bit, enough to give the series of shots a try at least. But the shot hurt like nobody's business, to be honest. My lower back cramped up terribly, and I was sore all that day and most of the next. I just want you to be forwarned about that-- but if it will eventually reduce or possibly relieve my RSD, a few days of a sore back will be worth it.
Cheers-
Dannyn |
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Kris ,
Welcome to Pain Aid but sorry that you have to deal with RSD. How did they finally find out that you had RSD? I'm in Northeastern FL.
Pls let us know how it goes with the Lumbar Sympathetic Nerve Block and pls feel free to e-mail me privately any time at: sokokl@yahoo.com
Kristy |
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Kris
I want to also welcome you to Pain Aid, this is a wonderful place, you will meet so many wondeful caring people.
We also have a chat, Monday-Saturday, 11:00 am (EST)
and Wednesday evening at 7:00 pm (EST) in Conference Room 1.
If you get a chance stop by and chat with us.
Take Care
Teresa |
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Hi there oziti: Welcome to Pain Aid, the best place on earth! So glad you've found us! We all walk down the same path and sometimes it's just no fun...but to know that there are others out there that feel the same way can be a real comfort and support.
It is hard to have an optimistic view on life sometimes, we hear that loud and clear. Pain is a tough one to wrap your head around, so when like minded and afflicted people come together it can be a really good thing!
As the other "painiacs" have mentioned a daily chronic pain chat, I just want to mention that the link is on the left when you sign in.
We're all here for the next guy so if you have the time, we'd love to have you join us!
We welcome you, cruise around, get as comfie as you can, LOL, and enjoy yourself...make new friends, share your joys, sorrows and pain with the next guy.
I think you'll add a lil ray of healing light to Pain Aid!
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
Don't walk in front of me, I may not follow.
Don't walk behind me, I may not lead.
Just walk beside me and be my friend.
Updated by PA_Gootes on 15/03/2007 13:44 |
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Welcome new members! (((Hugs))) A great family is here to help you through hurdles that might come your way.....When we first begin living with chronic pain, there is so much that happens to us....it is like a dark abyss has literally swallowed us whole and there is nothing we can find that is familiar. Believe me, all of us here have journeyed through some painful times......and we are here so that others wont have to go through that terrible abyss. Come on in and make us your online family who understands you.......With open arms we are glad you are here, Iris |
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Hi everyone. My name is Chris, and im a 38yr old married mom of one beautiful daughter. I live in NE Pennsylvania. I have been dealing with low back pain, radiating down my legs with pins and needles in my feet since i fell down a flight of icy steps in Feb. of 1998. Its been one heck of a rollercoaster ride since. Up until the day i fell, i was healthy. Save for some depression issues and counceling. I have been diagnosed with so many health issues its not funny. I fell, i herniated two discs and had some buldging discs with no relief from conventional therapy. I put on weight over the years and now i have diabetes, sleep apnea, stomach problmes, high cholesterol, high blood pressure, asthma, major depression and a two year old diagnosis of adhd, just to keep things interesting..lol. I went to see every imaginable doc. I did aquatic therapy, physical therapy, epidurals, ablations, and all sorts of pain meds......had the SSD doc pretty much say i was nuts, and i wasn't in pain to begin with and said at best i had some sort of pain syndrome at best. I got my SSD on the first try, so i think he was the nutty one. Well, now i have even more herniations and buldging throughout my spine, DDD and artheritis in various areas of my body In late 2004 i went to a neurologist in Philadelphia, PA. He was pioneering a program for lumbar back pain. I went through the screening process and had a spinal cord stimulator placed. It is and was WONDERFUL! It took away about 60% of my pain. Which got me off all of my pain meds. They went to an as needed status. Life was not pain free, but very manageable. I can testify to the relief i had when my battery died last april and I had to wait nearly 4 months to have it surgically replaced due to running into docs close to my home who could not help me with replacing it due to not having the knowledge of the system. In the middle Dec. 2006 I started having unbearable pain in my low back through my hips and down my legs. I went to a neruologist close to me, instead of going to Philadelphia. He ran several tests and i met with medtronic to have my stimulator tested. That doc said..."there is nothing neurologically i can do for you. I don't know why you have so much pain. Lose weight or your going to need new hips in 20 yrs. Go see pain mgmt." I did just that a few days later. I told my pm what the neruologist said. He had copies of all the tests the neuro guy did, he said nothing wrong???? You have a fracture in your back. A bilateral pars defect. Since then i have gone back to the neurology dept in Philadelphia. The doc there says bilateral pars defect, no disc material at L4/L5, and MAJOR DDD and added that there are bone spurs and some sort of bony complex, which i still dont understand. His answer? Fusion. He will revamp my SCS after the fusion to conrol any pain left over by adding two more leads. Pain mgmt agrees saying how much my health is declining over the last few months and getting worse. This pain is unbearable at times to the point where i can't even take another step and nothing relieves it. My new fentanyl patches take a small edge off but i pay for that little bit with nausea and vomiting. Not the way to lose 14lbs in 5 days. He offered oxycontin, but i'm hesitant. I was on it before and had major withdrawal to the point of hospitalization for over a week when i stopped it when it was no longer needed, but i tolerate it and it really helps my pain. I am supposed to get aquatic therapy set up pre surgically just to get a jump on it. But i just cant even shower and dress and run out these days. It is so hard. The pain, i'm exausted all the time, im Edited for language and trying to keep gatorade down long enough to keep hydrated, most days. My poor family. I try to hide it but when you are sweating and beyond words and cant take another step, it's kinda hard to hide. Sorry this is so long, guess i really needed to vent.
Updated by PA_2Spirit on 31/03/2007 02:23 |
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Hi Chris and welcome aboard! I'm so sorry to hear of your troubles, but hope that you'll always know that we hear you, we believe you, and we care! We're glad you found us and hope to see you around the site often. My prayers are with you and your family. |
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Hi Chris: Welcome to Pain Aid, the best place on earth! So glad you've found us! We all walk down the same path and sometimes it's just no fun...but to know that there are others out there that feel the same way can be a real comfort and support.
Sometimes pain is a tough one to wrap your head around, so when like minded and afflicted people come together it can be a really good thing!
We have a daily chronic pain chat: Monday-Saturday 11am EST. in Conference Room 1...link on the left when you sign in.
Theres also a chronic pain chat Wednesday at 7 pm EST. in the same conference room 1. We're all here for the next guy so if you have the time, we'd love to have you join us!
We welcome you, cruise around, get as comfie as you can, and enjoy yourself...make new friends, share your joys, sorrows and pain with the next guy.
I think you'll be happy here at Pain Aid!
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
A United Voice of Hope and Power over Pain
Always Wag Your Tail! |
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Hello to all here, new here
Having a rough night and finding you all definitely helps.
I've lived with chronic pain for 20 years was a RN and twisted/ turned and it was the beginining of my journey on the road of chronic pain.
Been diagnosed with degenerative disc disease, three herniated discs, sij dysfunction and autoimmune disease of my connective tissue.
I became a Feldenkrais practitioner as part of my path of healing which has helped me manage and enabled me to work part time with others in chronic pain.
Overall I do OK. Long acting opiates have been a part of my life for 8 years and help me function. I have been grateful to be able to tolerate them and have access to them. Its been a struggle.
I have been in a flare up for about a month and yesterday took a taxi (as I don't drive too much)
The taxi driver was unwilling to drive slowly. I was thrown back into the seat as i was trying to lie in the back seat.
So today I'm out of sorts with much insability and pain like i haven't had in quite along time.
i try to keep my thoughts positive and take each day as it comes.. tonight it was hard to keep postivie and it is good to find you all.
I'm wondering if there is anyone out there who has also been told about having an autimmune disease of the connective tissue? Part of the thinking of some of the alternative practitioners Ive seen is the chronic leaking of the herniated discs has created the irritation of my fascia.
Sorry that we are all meeting around having chronic pain and at the same time it helps to know we are not alone with this.
May we all feel better, Annie |
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aborg
Annie,
Welcome to Pain Aid, it is a wonderful place.
So sorry to hear of your pain issues, you will find such wonderful support here, this is a great place to vent, so vent away.
I too have DDD, have been fighting it for over 20yrs, and have lost 8 discs in my back, and now the discs in my neck are starting to go.
Do you have, Rheumatoid Arthritis, that is a autoimmune disease?
Take Care
Teresa |
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hi annie, welcome. I"m sorry to hear of your suffering. Hon, I'm diagnosed with undifferentiated connective tissue disease. Which means, I have symptoms of many autoimmune, connective tissue diseases, and my body will not pick one and go with it. I started out being diag. with RA, then lupus. My main symptoms are still "lupus" like. And I have lots of myofacial or muscle problems. I also have bad osteo arthritis in my hands and some other joints. My worst problems are neuropathy but you don't need to worry about that.
Did your doc mention a specific connective tissue disease? Or autoimmune disease? I'm not sure what you want to know, dear? But I know a lot about both, so if I can be of any use, let me know. I'm sorry to hear you have either, they both stink. Welcome to the group, this is a wonderful place for support, information, and making friends. I always feel blessed that I came upon this place. Please continue to join us. Hope you have a quiet, peaceful day, dear. See you back, Megan |
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Hello there. I am from North Canton, Ohio. I am 35 years old. I am married to my soulmate, and her name is Saprina. She is truly my saving grace. I have honestly never seen a person who will give so much of themself just non-stop. We have been married one year this month(April 29th). I am truly blessed because she understands my situations and is always doing all that she can to help me get through my hardest times. I am an Iraqi Freedom Vet. I was discharged in September 2003. Thank you for allowing me to introduce myself. Oh, before I forget, my name is Marc.
lancetopdogg
lancetopdogg |
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lancetopdogg
Marc,
It is nice to meet you, Welcome to the Best Place on Earth.
I am so happy that you have found someone who can be there for you, my hubby is wonderful, my pain started a little over a year after we got married and he has been there without complaint, its been almost 20yrs, having someone who loves and cares for you is a great help when dealing with chronic pain.
I want to say "Thank you" for your military service, you are one of the many special ones, who put themselves in harm way for our freedom.
Take Care
Teresa |
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Hi Marc and Welcome to Pain Aid!!!
It is wonderful that you are lucky enough to be married to a wonderful person who loves you and is willing to be such a wonderful helpmate!!
Here you will find acceptance and understanding! Be sure to check out all of the boards including the Veterans Section!
Again, welcome!
Glenda |
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Hi everyone. I found this board yesterday evening, and stayed up later than I should have reading the posts, but feel blessed to have found y'all - the understanding and compassion is nearly overwhelming, and has made me want to be a part of this community.
I am a 32 y/o wife and mom of two girls (12 & 8), and live in Texas. Up until January, I had a pretty good life - great homelife, loved my job (I'm a nurse), and was a fairly active person.
A couple of years ago, I started having terrible pain in my left hip. I chalked it up to wear and tear from 12 hour shifts working in a hopsital. Finally though, it got to the point of being unbearable much of the time, so I made myself an appointment with one of the docs I worked with.
He ordered some x-rays, called me a couple of days later, and said "Girl, you're eaten up with arthritis." He gave me a script for lortab and advised me to take it easy (yeah right).
I knew there wasn't much to do for osteoarthritis, so basically I just tried to grin and bear it. Oh, and lol, the lortab he gave me was 7.5/500, 30 of them to take PRN, with 2 refills. When I ran out about 4 months later, he refused to give me anymore, saying that I went through them too fast (??) and it seemed like I was becoming dependent on them. I was speechless. Then I was angry. But, there was nothing I could do, so I just did the best I could (and never went back to him).
Fast-forward to January of this year. I was seeing another doctor - well, a nurse practitioner actually (for unrelated stuff), and happened to mention the pain in my hip (which was still just as bad). She suggested corticosteroid injections, but wanted to take more x-rays first. Unbelievable as it was, turned out I had NO arthritis AT ALL. The idiot doctor I first saw had mixed the x-rays up - somewhere out there is a poor little old woman wondering what's wrong with her since she has such good, solid bones. I saw the first x-rays, and never doubted the diagnosis. I saw the second x-rays also, and actually carried them myself from radiology, so I know that these are actually mine.
Well, the NP suggested that perhaps my pain was caused by bursitis, and still thought corticosteroid injections were the way to go. She went to prepare the injection, and was gone for about 20 minutes. She apologized when she came back for the delay, saying that she had the injection ready when the doc happened to come by and told her that she had to mix marcaine in and use a different type of needle. She then started pressing on the side of my leg, starting at my hip and working her way down to my knee. I asked what she was doing and she said the doc told her to make sure she gave the injection in the 'tender' spot. I reminded her that the pain was in my hip, not my leg. She got kind of uppity and said she knew that, but she had to give the injection where it would do the most good.
Well, to make my increasingly long story go a little faster, she ended up giving the injection halfway between my hip and knee towards the back of my leg - staight into my sciatic nerve. I knew immediately what she had done, and so did she (my nearly falling and screaming probably had something to do with that).
She was a little panicky and kept me there for nearly an hour afterwards, sitting with me and repeatedly asking if I wasn't feeling and relief yet. She finally sent me home with a script for Norco, and told me I was having rebound pain from the injection, which should pass in a couple of days.
Two days of debiliatation pain later I called her back to see what was going to be done about this. She would not return my call, and the next week had her nurse call me back with a referral to an orthopedic specialist saying that there was nothing else that she could do for me.
I went to see the ortho guy even though I knew it wasnt an orthopedic issue (at this point I would have gone to a witch doctor - I was desperate and had no where to turn). He told me what I already knew - that there was nothing he could do for me - and referred me to a pain manaement doc.
My first appointment with the PM guy was in February. He got my records faxed and told me that the NP had actually 'pulled a plug' out of my sciatic nerve (she had used a large spinal needle to give my injection - and she had never given an injection like that before). He started me on hydro/apap 10/325 two every 6 hours and Lyrica 300 every 8 hours. He went on to tell me that maybe in a few months I wouldn't hurt 'quite so bad', but not to expect any miracles (like the nerve regenerating or not ever having pain).
Well, the pain has not let up one bit, and has spread all the way down my leg and to my lower back. My knee has started to buckle with every step I take, and my foot is starting to show signs of foot drop. I am also crying at the drop of a hat and so depressed I can't hardly stand it.
Needless to say, I am no longer nursing and have had to take a desk job, although that is not much better - sitting down for more than 10 minutes at one time is not an option because it aggravates the nerve. The past couple of weeks, I have also fallen asleep while working - right in the middle of something with no warning. One minute I'm awake, the next I'm asleep. I am terrified of what is happening to me.
As a nurse, I'm sure I have a little of a hypochondriac in me.
I am trying not to look at all my symptoms and pair them with possible diagnosises, but its hard not to do that.
Wow, lol, I just read over my post. I think I have turned into a rambler. I really didn't mean to go into so much detail or go on for so long. I do feel better though, getting most of it out. Thanks in advance for being patient enough to wade through my raving.
One more thing I want to say is that I hope no one thinks I am too much of a whiner - seems like most of you have lived with terrible pain for years and years. I feel somewhat guilty complaining so much since my ordeal (the worst of it anyway)
just started a few months ago.
Thanks again for letting me get it out - Courtney. |
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czgtz
Courtney,
Hello and Welcome to Pain Aid, no one here looks at your post as "whinning", we are all here for the same reason, comfort, compassion & friendship among those who truly understand and never feel guilty about discussing your pain, it doesn't matter if you have had chronic pain a month or years. We are so happy that you found us.
I am truly sorry that you have had to ordeal all that you have, in your search for pain relief.
You come back and visit us often, and vent away, we are here for you.
Take Care
Teresa |
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Hey there czgtz/ Courtney: You have definitely come to the right place! PainAid welcomes you with open arms! There's no such thing as rambling or whining...naturally you and the rest of us have to get it all out somewhere right??!!
You've been forced into a pretty crummy place, beginning with a wrong diagnosis and an injection. The pain of sciatic damage is very brutal. I'm in the same place as yourself, left with "hardwired painful" sciatica.
Have you considered and antidepressant? Now would prolly be beneficial for you as you cry easily. Life gets hard when pain sets in and truly does mess with the mind. Take away your job etc. and Whammo! Please consider something for it, perhaps a single med will help, or maybe a combo...sometimes it takes some tinkering. But, considering you've lost your quality of life, try something to help you through it.
Pain Management is a good thing, generally. Sometimes we don't end up with a compassionate doc, sometimes we do. You may need to work through that as well.
Chin up my friend, and know that we are here for you. We have a daily chat in Conference room 1 from 11-12pm EST daily and the support is awesome! Please try to join us if you can!
Hugs and miles of smiles,
Shirly
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
A United Voice of Hope and Power over Pain
Always Wag Your Tail! |
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Teresa & Shirly, thanks y'all for the welcome. I really feel like I have discovered a wonderful place, and I look forward to getting to know everyone.
And yes, Shirly, getting some antidepressants have crossed my mind, but I was really hoping not to have to take more meds than I already am. Hopefully, having this forum as an outlet for my anger/stress/sadness will help me snap out of my emotional funk. If not, then I probably will look into it.
Again, thanks for the support. See y'all on the boards.
Courtney |
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Hello courtney and welcome to Pain Aid
I would be very interested in discussing your pain issues with you. I just spent a little over an hour typing a response and then got booted off line and lost my whole post. I do have quite a bit that I want to talk to you about in reference to this injection into the back of your leg...
If you are interested in discussing this with me, you can email me at PAIceDrop@aol.com
I do welcome yet another nurse to Pain aid. I have seen so many new nurses coming thru here over the last year and am forever thankful that they have decided to stay here with us. I do hope that you decide to do the same.
I will be waiting to hear from you soon.
do take care
PA IceDrop
Registered Nurse Expert |
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Hi, Icedrop - thanks for welcoming me aboard. I am interested in hearing what you have to say about the injection - any insights or advice would really be appreciated.
Courtney |
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Hi Courtney. Wow. I read your post twice, jaw dropped both times.
I am so sorry you are going through all this. It's bad enough having pain that can't be helped, but to add to it is horrible.
I have to say, I would have asked the NP if she had ever given this injection when she started to poke and prod. I used to be a phlebotomist and pts would ask me all the time how long I had been drawing blood. My answer was a sassy "Today is my first day and you are my first patient" I did this only after I stuck them.
Now, I too am behind a desk and miss all the contact. I really had fun and loved my job. I have fibromyalgia and can no longer do that for work.
Good luck with everything, keep us informed.
Take care,
Sue
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Courtney,
My initial reaction was "OMG, a SPINAL needle for a trigger-point???" Definitely a jaw-dropper.
I'm new here too, but want to graciously welcome you to the community! Lots of great support, (even for spouses like me)!
Wanted to also express empathy about the job "shift"...I am also a nurse (who prays before every shift to make it thru uninjured). I can only imagine what you've been thru with this ordeal, but you have my deep sympathy (and gentle hugz); in addition to prayers and hopes that this is a temporary condition.
Because I work with cancer patients, I see pain in differing degrees everyday. I can give you a ton of anecdotal evidence, as well as many studies, that prove chronic pain and depression are inextricably linked...actually, they feed on each other. None of us want to throw another drug into the mix, but this is one of those times when you may wish to consider it (IMHO). Nerve pain is an icky sticker; my hub lives with it daily (so therefore do I), and I have my own to a much lesser extent (OTC meds). There is an entire realm of remedies out there, and navigating the therapies and the physicians requires persistence and stamina (a good online connection doesn't hurt, either ). Rarely does "the first" PM therapy provide optimal symptom management for the long term (in our experience).
Guess what I'm trying to say is that if side effects interfere too much and pain is still serious, it's OK to ask for a change in program. After all, you know your pain better than anyone.
I "get" the "hypochondriac syndrome" thingy...most nurses do that to some extent (I think docs are worse tho' ). Months or years matter not here; pain is pain.
Also, I do believe "whining" is allowed...tolerated...encouraged...LOL
Will be watching the board for you, and the rest of the nurses here (as soon as I figure out who they all are!). When I can get time away from my 12-hr shifts, that is...
Have a pleasant weekend!
rapunzel |
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Sue and rapunzel.
Thanks for the welcome and I look forwrd to seeing y'all on the boards.
I guess part of my problem is that I feel like such an idiot for not just walking out of that office. I was not knowlegeable about the injection, and took her at her word, which will never, ever, happen again.
Courtney |
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Hi all,
My name is Liz and I'm 43. I'm married and have three wonderful children . . . and three cats and two bunnies and five parakeet and four finches.
I'm a member of the PCAC council. I got here because my youngest daughter has been sick on and off the last couple years with something that left her in a lot of pain (her sister has it too, but not as bad). Everyone in our family has migraines and so. That's our pain thing.
My focus is mainly on helping families with children in pain navigate it all if I can. |
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Welcome, Liz. I'm new here also, but already feel like I belong. There is a wealth of knowledge here.
Courtney |
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Hi Courtney and thanks I wish I had known about this place when my daughters first got sick! |
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Hi Newbies,
I haven't posted much because my life has been way to busy lately take that with the pain and sometimes I want to crawl out of my skin However, this morning, laying in bed I was visualizing this hugh Black Storming Ocean in which I was caught and surely to be destroyed......Then, a lifeline reached me and written on that lifeline were the words instead of S.O.S. 'American Pain Foundation'......Soon, helping hands (maybe those made up by the various organizations that we are in partnership with.....) began reaching out to me....I heard messages like, "Over 125 million Americans suffer with pain....You are NOT alone....Don't let the aloneness of Pain destroy YOU......" Soon, I was again delivered to the "Bridge of Hope" that some see as the Rainbow.....I became very aware that it takes both Sun and Rain to make this Bridge of Hope....and here I am......saved by others yet again......Welcome to this wonderful place that is my Home and Family here.....Though I may wonder and may not always correspond, I carry the message in my heart always.....Welcome Newbies and may you find that the Light of Life has truly just "turned on" for you in its full radiant beauty at this site. From the Heart, Iris |
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Courtney,
I would like to welcome you to Pain Aid. I am sorry for what has happened to you. It sounds like an aweful experience, that has left you with horrible nerve pain to deal with. I too am a nurse who is dealing with chronic pain. I had to leave the profession that I loved, after trying to work with the nerve pain that I have. I worked for 4 years with it until I no longer could do it. I will tell you one thing, and that is I would do anything to be able to go back to work and do the job that I was meant to do. Stopping work put me into a depression. I had been able to deal with the unending pain, swelling, and disability that I had been dealt, but when I needed to stop work, that is when things got worse for me. While it helped me physically, it didn't mentally. I did need to go onto an antidepressant medication at the time, to help me through this. It has only been one year since I stopped work, and I still miss it the same, and I would give anything to go back. I still hope that one day, I will be able to go back. I will never give up that hope. I know that I will always have this chronic pain, for I have had it too long for it to go away, but as long as it is able to be controlled, there is that possiblity, that I would be able to work in some capacity as a nurse. Never give up your hope.
I welcome you to Pain Aid. It is a wonderful place to come. There is alot of support, as well as information here. We have a chat everyday from 11am to 12nn est. in conference room number 1, that you are welcome to join in. If you have any questions, please don't hesitate to ask them and any of the nurses or other pain aid members will respond. Again, I don't know where I would be today without this place. It has helped me through the difficult times I have had. Denise |
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Liz FS,
Welcome to the greatest place on earth. You will find so much support here, the comapssion is wonderful and the friendships are for life.
Take Care
Teresa |
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Hey Liz FS:
Welcome to PainAid my friend. We are here for various reasons but the main issue is pain whether we have it or somebody we care for does. Compassion and understanding is key although not always easy.
We welcome you with open arms to the Painiac Community. This has truly been my life preserver for the past couple years. Without my fellow sufferers it's hard to tell whether I'd still be on this great green earth or not. I like to think I would have been strong enough to fight but there were surely times I wasn't.
I have had some awesome and inspiring years here...we all have. Great to meet and greet! Stick around and enjoy the company!
Hugs and miles of smiles,
PA Gootes |
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I am wondering how the newbies are doing. Welcome to any I haven't gotten to talk with yet....looking forward to getting to know you. We are here for YOU as well as for each other. It is AWFUL to go through pain and think you are alone.....and that is one of the biggest lies that chronic pain first tried to convince me of. Then, I found APF and my life has been enriched much to pain's dismay...Although I still have high levels of pain I have new tools now to fight back with. So very delighted to see others coming aboard......Looking forward to talking with you even more, Iris |
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Hi folks,
I'm not really an old timer, but I'm surely part of this lovely community now. You are too.
Liz, aww I keep forgetting the rest,
you might want to take a look at 'the place with no pain'.
It is found in the 'off topic forum'. we just kinda have fun there.
I don't know how old your kids are. You and the kids might like writing stories and playing in this ever so fun land with no pain.
extending this warm and spacey welcome to the other lovely person(dingy memory again) with kids in pain
That is much harder than your own I would imagine.
bye
Nan |
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Hi to All ~~ Let me say I am glad that you have found a place to come and deal with your pain. Online support can be wonderful and I have belonged to a few over the past prolly bout 6 years. I am happy to have found this for sure!!
I tired to read as many stories and intro's that i could and save some "energy" for typing.
In 8-2000 i had a great and rewarding job. Then i pushed away from my desk & the roller stuck on the "mat" and wham me and the chair flipped back. i landed on my shoulder and then my head bounced a few times. I didn't go to a doc till the next day.
Too make a long story (as short as I can) I continued to work for a year and a half till i found a doc that took me off work for two weeks, then 4 hours days and then 6, I worked with ice packs on shouler and neck, typing with one had and carryig a pillow to support my arm that was practically hanging out of socket.'
Big mistake to continue work, That led my employers & work comp to believe i was faking. I swear i believe this doubting attitude adversely affected my care.
I ran the gamet of differnet docs and medications, injections, exrays & mri's with and w/o contrast, and oxy-c withdrawal as the worst part ever.
I had a doc tell me my disc were not bad -- to suck it up and get on with my life. that day I almost drove my car off a bridge!!
It took over 3 years for them to do a discogram & determine that i had blown "at least" 3 discs in my neck. My discs were like flat tires. another year past before i found a surgeon that would touch a "triple" C-Spine fusion. The surgery was liek a miracle the first 2 years. My shoulder was still diagonosed as remarkably normal with bursitis!
By the time i had neck surg I was home bound a year due to fentanyl use & bedridden the next yr with migraines and pain.
Now it's coming up to seven years since i was first hurt and I live with chornic pain from the surgeries & lots of nueropathic pain, and trigger points (myofacial), bone graft morbidity in hip and now a bulging L5/s1.
I have been trying to get work comp to cover my "anti-depressant" since June of last year.
i know that you need to move your focus off your pain .. but this comp evals & lying doctors have me in a real bad place. i hope i do not need to go through a deposition!! I just want to settle and get on.
Oh and when they arthoscopic repaired my arm i had a torn ligament, bone spurs to be shave off the acronyum & ball of arm (?) and a mass of infection removed. The surgeon was blown away at that damage that never showed on film.
Now they still do not believe my pain .... but i guess that's their jobs to mkae you not win money form the insurance.
My side of the case says i'm 75% disabled and will be further disabled regarding the psychological problems that have Arisen.
Siggggghhh Work Comp is no fun .. Pain is NO Fun .. and by July I should have an antidepressant. Then maybe i can be my jolly ol' self again.
I am SSDI with medicare and missed my part D enrollment.
That's my pain and my story and I'm sticking to it !!
peace to all ~~ Marge |
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Welcome, Marge! (Marge is my mom's name)
Sounds like you've been 'thru the mill', but managed to arrive here with positive attitude intact! Sorry you have a reason to be here, but really glad you came. As you've read, this is a pretty supportive place with wunnerful folks.
Hope to see you again soon!
rapunzel |
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Neekarose,
Marge,
Welcome to the Family, Pain Aid is a wonderful place, we have the most compassionate, caring, loving people on earth here.
We are so happy that you found us, and we hope you continue to come back and visit us often.
Take Care
Teresa |
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Neekarose,
I also wanted to let you know that we have chats, and would love to have you join us.
Monday-Saturday 11:00 am (EST) in Conference Room One
and
Wednesday Evening 7:00 pm (EST)
Take Care
Teresa |
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hi i'm tammy, this is also my first time here, i'm 46
on nov.1st 2000 i separated from my husband of 18 years. my dau & myself moved in to our first apartment together. on nov 23rd (Thanksgiving Day) my two dau's were involved in a car accident, my youngest dau died. my pcm told me this would be the worst pain of my life, he was right.
i had this awful pain in my mid back & my right ribs, thought it would get better from being off work for a month, it did'nt.
in 2001 i was diagnosed with degenerative disk disease. i also had a herniated disk @ t-8. i had a fusion t-7 - t-9. in 2005 i had a fusion. to get to the spine they entered through my ribs, they also had to colapse my right lung, this was extremely painful because the instruments were so large and my ribs are so small,. kept going back for chek-ups, still was in extreme pain. had mri of neck, found 2 herniated disks there, docs said this was the source of my pain. Becoming desperate to get relief april 2006 had another fusion c-5-c-7. after that surgery pain was worse than ever. i could'nt even swallow. dec 2006 had hardware removed. by this point pain was unbearable. had tons more tests, nothing. finally went back to the emory spine center (that's were i had the 1st surgery). was diagnosed with bruising of the rib itself with periostiitis, scaring in the intercostal, irritiation & scaring of the intercostal nerve itself. i also have arthitis of the spine, osteoporosis, macular degeneration, seizure disorder. i've also a bad had surgery & need another one.
i do have alot of positive in my life, promise to get to them next time!
i feel like my dau died & i went to HELL!
sorry this post is sooooo long i've been holding this in for so long & i really needed to vent.
I had no idea there was anything like this out there, hope this is as good for me as it seems to be for you guys!!
take care, and i will be praying for all of you!
tammy
tamm |
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Hi Tammy: Welcome to our wonderful lil world! You'll be very happy here!
You've gone through large Hell from the sounds of it, I'm truly sorry for the loss of your daughter. We only have one and life would surely end if she was taken from us. Chin up my friend, chin up.
You popped into chat yesterday, that was nice to see! Chat can be whatever you make it, be it quietly sitting back or familiarizing yourself with others who suffer as you do. We'd certainly love to see you there again, so do pop in again. Chat is daily at 11am EST and Wednesday evening at 7pm EST.
Do take good care!
Hugs and miles of smiles
Gootes |
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thank you!
that was the very first time i have every entered into any type of chat room. i might drop in again, i wasn't sure what to expect. hope you don't mind if i just listen for now.
again thank you for the verry warm welcome!
tammy |
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I have been reading all the wonderful posts here. Though I would like to have instant recall and be able to comment on much of what I read my brain just doesn't work that way. I do want to say I am very grateful to read the words from so many thate are here. Thanks for being such a great part of my life. In nursing we use to say that the new nurses were our "life blood" that gave us vitality and strength to carry on as those of us who had been around for a while were there teachers and our knowledge was vital for strength of the working unit. What I love about this "home" so much is that every person here is significant. Each person is vital to our functioning and I am very grateful for each of you. Thanks so much, Iris |
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 Hello......I am Sandra. I have arthritis throughout my body, especially my right hip and my spine. I have been on lots of different meds for 5 years. Today my pain dr. prescribed Fentanyl. I haven't used it yet, but I surely hope it will help. And may I add, this site is an absolute Godsend for me.
ashlynsaunt
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ashlynsaunt,
Sandra,
Welcome to Pain Aid, the best place on earth.
Take Care
Teresa |
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Aloha! This is too you ALL;
Well as You Old Timers know of me, I have been in Chronic Pain for 35+ Years. I also You All to Know That I AM A CJRISTIAN. Yes I do Believe in Prayer. Our Lord made Us and He Is The Only ONE THAT CAN HEAL US, Praise the Lord. I was 29 Years Old when I Hurt my Back and Have had Everything done to me to try to Solve my Problems. But Over the Years I have only Found ONE thing that WORKS, That Thing is OUR FATHER IN HEAVEN. Ask and You Will receive. You May Ban me from this page, But I just want to give Chronic Patients Hope, For Eternity. |
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Ashlynsaunt,(get that right?),
Loved your moniker, my niece and nephew are so special to me.
I'm very glad you found this place.
Sometimes I think I spend a bit much time here, BUT, I sit on my rolly ball.
that is practically core PT.
I am way less lonely.
My Nephew, that I had been picking up since he was a babe, loved going to the bookstore that had fun crawling,creeping,walking space for little ones, came for a visit at 14 alone waaay out to CA.
I live near a lovely ski area. I'm in the desert valley, love it.
I dropped him off with the pros for snowboarding lessons. Flatland Texas boy, never negotiated snow in his life.
He finally got a clue at the end of the class.
The instructor said he had a day long pass. He kept begging me to use it up. I could not say no, though I was a wee bit nervous.
He went up, got off at the right spot, came down. begged...I caved he went 2 more times.
Last time he got in such a deep hole I sent the patrol dudes after him.
Proud I was, that he took off his board and was walking down before they got there.
He did count the snowmobile ride down as awesome.
Love being an aunty,
Bye Nan |
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Whoa Nan...awesome takeaway on life wouldn't ya say?
Smilin Gootes |
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Hey Ashlynsaunt/Sandra...Welcome welcome, to our corner of the world! So happy you found us! We all walk down the same path and sometimes it's just no fun...but to know that there are others out there that feel the same way can be a real comfort and support. Pain is a tough one to wrap your head around, so when like minded and afflicted people come together it can be a really good thing!
Pain Aid is the best lil place on earth. Come join us in Conference/Chat Room 1 daily at 11am EST if you can, we'd love to meet and greet. I love chat, support on a daily basis for me is critical. We also have a Chronic Pain Chat on Wednesday nites at 7pm EST. Join us and the rest of your fellow painiacs that are here on the boards. We are here for ya!
From north of the border,
Smilin Gootes |
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Hi there Sandra!!
A big paniac welcome to you!!! I'm so sorry for all your pain, but if you keep coming back, I just know PainAid will help you. I've been here since last Oct., and the impact this place has had on my life has been tremendous!!
Please join us at chat every morning at 11am EST. You won't regret it!!
Hugs,
Patty |
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Hello new comers -- Well I'm a newcomer too, but wanted to tell all of you thanks for your stories. Like someone else said --it's hard to focus -- so names escape me. It is nice to have a place to come and write and VENT about this life of pain.
It floors me to this day the docs or therapist that can look at you and say .... you should be better now?!?!? hello, believe me if there were anyway i could be better and get on with work and life I could.
I get on day by day .... and don't plan ahead to often. I wish i could STANd to get onlie and type more often too!
Welcome to a great place!
Peace to al ~~ Marge |
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Hello I am Narimatsu as known on this fourm..
Here is a little bit about me:
1. I am 27 and was dx with MS at 19
2. The main symptom that caused me to joing this group is my struggle with neuropathic pain
3. I am from Hawaii
4. I have a Masters and plan to teach part time
narimatsu |
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MY NAME IS jeff12step( username)...friends call me jeff...so please, all of chronic pain brothers and sisters--jeff is fine...i was ready to tell my story tonite, but as you would guess, in the last 15 minutes my pain has shot way up and serious spasms in the back, and the sciatica is excrutiating...so i need to medicate and lay down...but , i will leave you with this: CP pt, since 1992;been thru 6 bac surgeries and all the the labs,pictures,tests,rehabs,medicine trials,research studies,yada,yada,and yada.....questionable docs, leery pharmacists, pre-judgemental health care providers, red flags,yellow caution memo stickers and black listed specialists....as well as some beat around the bush websites, mis-informed convention/symposium talks and reports...and have not felt compared to open up , let go and share,seek advice, give hope to another with my experiences, and feel the pain of others ...until i was directed to ths sit and browse, read and take in the faith,humor,commaderie and unconditional love i'm feeling here ! i do not work in the medical field, but became pro-active in my healthcare when life seemed hopeless and helpless....and only the care of friends and my belief in a Higher power, i believe are the reasons i can e-mail this...(pain is worsening,so i nee to sign out.....but not without thanking ALL of you for your openess,and help to one another that has brought tears to my eyes and laughter to my life. Iwant to be a part of that. and i want to help others that are just beginning thier Chronic Pain process.!! so, that's a little about me, but i'm just beginning to see--thats' what WE are about. Thanks for the space here, and i do plan to utilize it!!...God bless.jeff |
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Hi Ya Jeff a vet too I see ,
My dad was in the USAF durring the vietinam war too . He didnt see combat duties but did some behind the scense work , I am so glad that you came out today to say hi to us all . I want to first say welcome and second offer you my friendship . Of course I wont be as good as a friend as the Lord is to us all but I will be a friend . LOL just a little joke . I felt the same about this place as I read real life people supporting and understand that which had been my lfe for so many years . I never really felt understanding from too many people . It was mostly that they just didnt understand me and the things that happened to me and the meds that I took .
We have coffee chats monday-saturday at 11 am eastern time . That I would like to invite you to join us if you would like . With pain chats on wednesday at 7 pm eastern time . It is very casual as the name of the chat makes me think of people out drinking coffee with friends . That is just what it is like .
I hope that you find this awsome place Pain Aid an anwser to what ever you need to make your life a little bit brighter . I know that my life was kind of dim and really lacking some thing before I came here . I am so sorry that you have gone through so much . I am glad that you were able to post through your pain . Sometimes writing on here and responding here is a good distraction to my pain . My pain is pretty high right now but for some reason I felt like I wanted to reach out to you in friendship and let you know Jeff that I care ....
I am so glad that we met today . It has been a rough day but now I can go to sleep knowing that I made a new friend today .....i feel better already .....
With warm regards ,
Dre' |
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Hello to you Jeff!!
You sure seem like you will fit in here perfect! Youve been thru quite a lot with your back and I sure do understand back pain.. I look forward getting to know you. Its a wonderful thing to watch people become empowered and gaining that strength to take on this life of pain. Your strength will help others here because you exude calm.
Do take care and be well.
PA IceDrop
Registered Nurse Expert |
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Hi, this is my first time here. I have no idea what I need but it's good to see other people who really understand.
Annerose |
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Annrose,
Welcome to Pain Aid, the Greatest Place on Earth. You will find so much wonderful support here, and you will meet friends for life.
Come back and visit with us often.
Take Care
Teresa |
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Thanks, Teresa. I'm glad to be a part of something positive. I'm trying to move on a bit I feel like I have been stuck in a (painful) rut. Most folks either do not understand or don't believe me-that is the worst thing to me. Everyone sounds not only nice, but normal! |
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Hi ya Annerose and welcome to pain aid ,
I am sorry that people don't believe what you tell them about how you feel . Well you will not find that around here . We understand and many of us had some of the same experiences . There is no judgement here . We are here to support and encourage each other in positive ways .
I know when I first came here I had not really been understood or did I really understand myself . This is a great place to begin to understand what is going on inside of your body and mostly your mind . I hope to see you around the boards . We have coffee chats at 11 am eastern time monday-saturday and wednesday at 7 pm ......I go from time to time . It is nice to form friendships with people who care and understand where we are coming from . I hope to see you there ......
Best wishes and take care ,
Dre' |
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Jeff and Annarose
Welcome to Pain Aid!
Like I said in some other post recently, I always feel a bit guilty welcomeing someone else to pain aid, because that means that yet another person is in pain. It would be nice to have the shut the site down from lack of users, wouldn't it? But since you are already in pain, welcome welcome, you are among friends now.
Dre has already told you about the Coffee Chats at 11 am. There is an evening coffee chat as well, on Wednesdays at 7 pm EST. These chats are held in Conference room 1 http://chat.painfoundation.org/Login.aspx
Just use your screen name and password to sign in, and you will be ready to go!
Hope to see you both around the boards soon-
Dannyn |
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Welcome Annerose and Jeff!
Your fellow painiacs have said it all. You've come to the finest place on earth! We hope you'll enjoy your visits to PainAid. We're all here to support each other and I hope you'll feel right at home here.
Hugs and miles of smiles,
Gootes |
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Hey west coasters, I wanna introduce myself to all who live in the more relalistic time zones. I live in Alaska and ny the time most of our active chatters are going to bed i stil need people to talk to. My IM addresss is akzwick@hotmail.com feel free to IM me or e-mail me at jz960@alaska.net. Im up late and always willing to yak about the problems we with chronic pain need to talk about. I have severe spinal problems and the accordant financial problems that follow while waiting for the ssdi police to give to give me a hearing. Please share your thoughts with me. somtimes you have to e-mail me first to alert me but heck lets make some new friends to share some of those evenining hours when the pain and lonliness of chronic pain really hit. mention pain in your e-mail so I know your not junk mail, but I'd really like to talk to you.I think new friends are a great pain relief!. MY computer is open 24/7 most of the time. have a pain-less envening..............jeff
Fairbanks |
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So glad to have found this site! I am a 54 year-old brittle diabetic with severe arthritis, neuropathy in arms & legs, many physical injuries from years of training horses (and falling on my head), severely damaged vertebrae in neck (after a recent xray at the ER the doctor thought I'd fractured my neck), frozen shoulder/impingement, chronic trigger finger, etc, etc.. Pain is EVERYWHERE!
I have taken a prescribed narcotic pain med for 8 years (Loritab). I have tried EVERYTHING else - they just don't work! I have ZERO history of ANY social, behavioral, or legal problems due to any kind of substance abuse. I'm an *upright citizen* with NO issues of any kind whatsoever to cause any concern over my use of pain meds. 3 years ago I moved to an area where no one knew me, new doctors, etc. My previous doctor I had seen for 10 years. For 10 years I took my medication properly, never have "abused" ANYTHING in my life. My doctor would write all my prescriptions with 3 months refills. I live in an isolated area and was without a car so have to organize my errands and had it so I pick up everything on the 1st of the month.
Since being with a new office (3 years) I have had nothing but problems, been treated in a patronizing and contemptuous manner, won't give refills, the doctors "forget" to put my prescription in, or go on vacation without giving me my regular prescription when it's due, just constant little games... when the doctor "forgets", or is out of the office when she said she would fax it to the pharmacy, and I have to call to try to get my prescription - the receptionists and covering doctor make out like I'm wheedling for drugs; it just feels like they are treating me like I'm mentally deficient or a drug addict. They have been down right rude at times.
I have Medicaid so it is not even possible to fill a prescription early, or to obtain multiple prescriptions from different doctors. I have never misused or used more than prescribed. I have tried everything else, and I do everything else I can to deal with the pain: nutritional support/whole foods, detoxing (liver and toxins), QiGong, Accupressure, yoga, mineral baths, aroma therapy....
The last time I went to the doctor she said they don't do refills any more but she would send the prescription in the mail. It's a 40 mile round trip to get to the doctor (and I didn't have a car or transportation). That is just ridiculous as I can't get it early, so she could send it to the pharmacy to put on file, to be filled at the proper time. She didn't. I am moving -major out of state move in a couple of weeks, so needed the prescription as I will run out in the middle of the move, and it takes time to find a new doctor. I just called and got yelled at and talked to like a naughty child because the prescription wasn't due for a WEEK. I explained why I needed to get it now - not FILL it now, but get the prescription. I was firm but not rude - I was assertive (yes, I AM tired of being treated like this!). I did not raise my voice or swear, just explained and was assertive. My doctor just called and said they are terminating me and will not see me any more as a patient! I want to file a complaint but don't know where? How do I continue to deal with this?
I would be in bed curled up in a ball without pain meds. I could not get up, dressed, take care of my house, clean, sit up in the car, run errands, ...anything...if I did not take pain medication. Am I dependent? Sure I am - in the same way I am dependent on insulin and blood pressure medication! This adds so much stress and DIStress to me - making my blood sugars and blood pressure soar - gee, THANKS Doc! I'm sorry this is long, I don't know how else to explain or where to go. Thank-you
secretgarden |
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Hey secretgarden, Welcome Welcome! Your fellow painiacs will come to your rescue with sound advice to help you through this mess you find yourself in. I want you to know that what you are going through is not at all uncommon, many of us find ourselves in the same position. If you post your situation on the diagnosis and treatment board, you'll find like minded people will come to your aid with suggestions. Most of all, you are not alone on the pain path my friend!
If your mornings are free, we have a morning Chat in Conference Room 1 at 11 a.m. eastern time, Monday to Saturday. We'd love to meet and greet if you can make it! There is also a Chronic Pain Chat Wednesdays at 7 p.m. too!
Enjoy your travels around PainAid secretgarden...you'll be happy here!
Hugs and miles of smiles
Gootes |
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Hi Secretgarden,
I so identify with your story. I am an RN and when I began to have problems I went to doctor's that I knew and worked with, and I know we had a good working relationship and that these same doctors depended on me..and I am getting the same run around you are. I stayed with one guy for several years, despite the way I was treated, because I was more afraid of what else I would find. I take what I consider a very small amount of medication, Darvocett, 2-4 pills a day. It only helps a little bit but is better than nothing. I endure pain day in and day out, like all of us do, and I have come to terms with the fact that it is never going away. But, if I had no hope for any kind of relief I don't know what I would do. I have to work because I am alone, and it's very very hard, but if I did not have that medication I don't think I could do it. I have taken several courses on chronic pain over the years, and I don't know if any of the doctor's I've been to are aware of how to treat pain. I have been to three pain management doctors, and only one of them was even partially acceptable. And that one, like so many of the others, did not want to talk to me about any kind of pain that could not be handled with an injection of some sort. One of them was openly contemptous and informed me he did not treat the disease I had been diagnosed with (syringomyelia). He accused me of looking it up on the internet and making up symtoms to match the diagnosis The third did not discuss things with me, and when I asked about a muscle relaxer he just gave me a muscle relaxer and would not refill the pain pills. He made me go home and see how it would be. Then, I called when the things didn't work and was informed that they do not do refills of medication over the phone and I would have to wait until the next appointment. All this over a few darvocett. Like you, I am extremely careful and responsible taking that and all of my medications. It hurts when you know people think you're a crock. I confronted my current doctor about it a little bit, and for now am getting my refills with minimum of fuss. For now. What happens is a person who is not a drug seeker is made to look like a drug seeker because it is so hard to obtain pain relief. Good luck and I hope to talk again |
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Here is a link to a thread here in the advocacy thread. You will find links to your state's med qual aassurance board. I would definitely file a complaint -- nobody deserves that treatment!
by the way... welcome to the best community on earth!
jr
http://discuss.painfoundation.org/replies.aspx?cbbsid=19&tid=13439 |
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Hi my name is Pat and my user name is Mitwife. I am in pain alost constantly. I have diabetes neuropathy in my feet and legs and fibromyalgia in all the lower part of my
body.Iam going to have my second procedure in my lower back to try to stop my lower back pain and give me some relieve.I had the first procedure last week and that was just a test to make sure it works, it lasted for an hour, this week it is supposed to last longer.I was born and brought up in Georgia; married and moved up here when I was 25.
raised my family and for 6 yrs I lived in Ga again NOW I am
back up here in a surburb of Boston Mass. Has anyone had
cordisone shots in their back before and did it work?
mitwife
mitwife |
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Hi Pat,
I've had a couple of selective nerve root blocks and the second one in particular was miraculous. However, it lasted about two months. I think the most important thing is to let the doc know exactly what you are feeling, like whether it helps or not. I had facet blocks too, and I wanted them to work but finally had to tell myself that they did no good whatsoever. Also, I think the steroids that are put into your system make you feel really really good for a couple of days.
I work full time and my job is 74 miles away so I am usually gone from home 12 hours a day. I'm exhausted by the time I get home (actually, I'm exhausted even when I stay home). Housework is not on my priority list. I live out in the country by myself and there are a lot of things that just don't get done. My weeds in the yard are very tall and do obscure the house, being taller than the house. It's like going through the jungle to get up my driveway. It's actually pretty funny.
Most folks never know that I'm in pain, and I hate to talk about it in a way, but at the same time it's great to have a place where that is ok. Unfortunately I don't look like I'm hurting so I feel like I'm having to convince professionals that I'm telling the truth.
Anyway, don't really want to complain...life is good and I decided not to let it stop me from being happy at least most of the time. I have great kids and grandkids, and even though my job is hard I have a job.
It's good to talk to you. Hope to find you again.
that is my main problem right now with this website--I have a hard time finding where I was the time before...memory not what it was.
Annerose |
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Hi mitwife
secretgarden,
Welcome, you will find so much valuable help and information on this site.
One of our lovely PA folks posts a link to a paper with article I find very helpful.
I spent a lot of time all over the web, looking for things that my friends here can guide me right to, plus give real person feedback!
I would imagine, mitwife,(ah can just heah your riiiight now), I'm lived in the south, Texas,Alabama,Tennesee,Florida. I miss the 'yes maam' and soft voices a lot.
I must say you couldn't blast me away from Ca. with a neutron bomb.
Love my mountains.
I hope you get relief with your injections.
Bye now,
Secretgarden,
Oh we have all so been where you are. It is demoralizing, degrading and unacceptable.
You in no way deserved that kind of treatment.
The up side is you might find a kind, ethical, brave, doctor now.
That was my experience, when gently urged out the door.
Small town, everyone knows what is going on.
We all acted so mature and co-operative.
grrrrr,
Love Love my doc now,
Hey, had to add, in my mind I saw lots of helpful gnomes and flitting faires in your secret garden.
If you like to play, there is a place for it here, when you are in the mood.
good luck,
Nan |
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Hi rollercoaster, just wanted to tell you my back rocedures
went very well and I was no no pain at all last week. Had the procedure on wedand on friday I was rear ended and
received minor whip lash, as if this wasn't enough next day
I was grocery shopping and lost my balance and fell in the
store. As my son said, Ma its a good thing you have bad
luck or you wouldn't have any at all! Maybe he's right? I
have suffered pain in the lower part of my body since friday
now. I know they can't do anything for mnor whip lash so I
won't bother going to the dr.
southerngal3 |
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To All Newcomers,
Hi! Sorry I haven't been posting much lately. First, I moved....and Second I was very busy with things they were working with on my back...my fifth epidural and the external stimulator and the work on my medications.....Finally, I think we have something I can live with at least 90% of the time as long as I do my part and stay current with my meds. Again, sorry it has taken me so long to welcome our new ones...May you be as blessed as I have been to be a part of APF...we care here and we speak the language of love and understanding....Sometimes we may speak even with forked tongues when we are hurting but we never stop caring about one another! It is a Joy to have you here. Looking forward to getting to know each of you. From the Heart, Iris |
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Hi, my name is Carrie, I'm 30 years old, married, mother of 2, and have had chronic back pain for about 3 years now. For the past year my pain has gotten so much worse, my average pain on the scale is a 7, and that's with taking meds everyday. I'm so tired of hurting ALL the time, I've been diagnosed with depression, no surprise there, this living with pain stuff is depressing. After 3 years of chronic pain, seeing about 5 different speacialits who all told me there was nothing they could do, and my favorite(which caused me to sit in my car for a good 20 minutes sobbing before I could see to drive myself home), was "you are just going to have to live with it". I was 28 years old. I was finally diagnosed 1 month ago with myofascial pain syndrome, which to my understanding means my muscles hate me and are having their own little war all over my back. I finally found a GREAT Dr. who actually wanted to help me! I couldn't believe it, I wanted to hug and kiss her. What she suggested was trigger point injections with Lidocaine, and then Physical therapy to gently stretch my muscles to ease my pain. I had my first set of shots 2 weeks ago, I had 12 of them, needed about 30, but that was the max she could do without me overdosing on the Lidocaine. They went great, I had relief of pain, and couldn't wait to go back for more, I thought finally I could maybe be pain free and finally be a better wife and mother, because this pain has caused me extreme guilt for not being able to do more with my family. It's like I live here, but when I get home from work, I work full time by the way, I'm in so much pain all I can do is just lay down and watch. I can't help with housework, I can't cook my family dinner, and I certainly can't play with my kids. Well I went yesterday for my 2nd procedure, only to find out this wonderful dr. was gone, she no longer works there, in fact, she moved out of state. I'm devastated, I finally found a good one, and she left. The dr. that did the shots this time was horrible. She was rude, she wouldn't listen to me, and all she did with the shots was make me worse. She didn't get any of the Lidocaine in my trigger points, they all swelled up, and I hurt worse than ever. My husband was watching her and said she was jabbing me with the needle to try to get it into the muscle. I couldn't sleep last night because of the pain, and today I can barely move. I'm so upset, I couldn't stop crying, and I don't know what to do now. My husband doesn't understand at all what I'm going through, and we fight all the time about things. He gets mad at me for not doing more, he doesn't understand I do as much as I can, and how much guilt I have for being in pain.
I'm sorry this introduction is so long, I just need some help for myself, and my family to try to understand what I go through everyday. Any help would be appreciated, and thank you so much for allowing me to tell my story. |
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hi, i'm janie, and am new to this board. i've had chronic pain for the last 7 years. it began with a back injury at work, followed by surgery, and now the doctors say i've got failed back surgery syndrome...all i know is that i hurt terribly all the time. i'm glad to have found this forum. |
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Welcome Janie and Carrie
As always, it is a bittersweet welcome, because it means that one more person --in this case two more-- are in pain. But since you already are, we are glad you have found us!
First off, I'd like to let you know that we have regular "Coffee Chats" every M-Sat at 11 am- noon Eastern Standard Time. It's a great way to get to know other members. A bunch of us meet up and talk about whatever is in our heads: it could be last nights Dancing with the Stars, or an upcoming procedure we are going to have, or oftentimes it's about food. If you can't make the morning meetings because of work, or whatever, there is also a meeting at 7pm EST on Wednesdays as well! It would be great if you could join us in the chat room for some laughs and comradery.
Carrie, I am sorry to hear that the Good Doc went away. That has to be so disheartening, especially after getting poked by this other doc so rudely. I hope that the increased pain from this procedure eases for you soon. Please don't give up on the treatments-- just ask that someone else administer the shots, and explain to them the difference between the first procedure and the second one.
As for your husband (and anyone else) not understanding where you are "coming from" when it comes to pain, I have found that the Spoon Theory is a good way to get the message across to them. Here's the linnk to it if you haven't read it already:
http://www.butyoudontlooksick.com/2004/11/the_spoon_theory.php
It might be a good way to explain it to the kids as well, about why you need to rest so much.
Janie- I am sorry to hear that you hurt all the time. Like Carrie said in her message, it gets a bit depressing to have to deal with that much pain. I want you to know that here at Pain Aid, we all know in our own way what it is like to deal with chronic pain, and we are here to help you. I hope that you will tell us more of your story, and let us get to know you better. We are here for you!
I look forward to seeing you both around the boards, and in chats if you can make it!
Dannyn
PA_2Spirit |
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Hello, my logan name is Southerngal3 (as you can see) my
name is Pat and I have diabetes and fibromyalgia, and
chronic fatigue, so this puts almost all my life in pain. I
have a question I am dealing ? with depression right now.
I went to my diabetes dr the other day and he was discussing excerise, diet, etc and all of a sudden I looked
at him and said "You know what I DON'T CARE" I live my
life alone and I have very few thngs that make me happy
anymore, I have a daughter and son who live near by but I rarely see them, they have their own lives. Anyway I told the
dr that I didn't want to give up drinking soda, (don't ask me to drink diet soda disgusting) or follow a diet I am sick
to death of hearing about diets. My point is am I depressed
or if so should I go see someone about it. I have known people who have tried to do something about it and they end up not kowing whether they are crazy or the dr!
southerngal3
southerngal3 |
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HI Pat, welcome hon. I've been where you are. I've got Fibro, Lupus, Chronic Fatigue, Osteo, and terrible small fiber neuropathy, I'm always in pain too. And I get tired of people telling me, "if you just did this or that, or this or that, you'd feel great! " WHATEVER! I try to do what my docs tell me to do, I'm a good patient. I understand you being depressed, of course you are. Being sick and in pain is no fun, it's exhausting. And lonely. And then being told you have to follow rules makes it even harder. You know your doc is only trying help. I had a bio feedback doc who was also a therapist, he was great. I ended up talking to him about my pain and depression more than about the biofeedback. I think you should give it a try. And come here and talk to us. We all understand, that's what we're here for. This is a great group of people, we all support each other through the good , the bad, and the ugly. We're here for you too Pat. Stick around and meet all of us. We're very glad to meet you. I'm sorry for your suffering dear. I understand, really I do. Having others who know what it's like has been so comforting to me, when I thought I'd lose my mind, and I've come close several times. It comes and goes. Please stick around, you'll like it here. Peace and love to you, Megan |
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Welcome Aboard Carrie, Janie & Pat!
I'm sorry to hear of your troubles and pain, but I'm glad you found us! We're here to lend a helping hand and a sympathetic ear. We hear you, we believe you, and we care about you!
Keep us posted, keep a good thought, and keep moving forward ~ we hope to see lots of y'all around the APF/PainAid boards and in chats.
~Mary Anne |
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Hi all, new here, just had 1 post in the rsd area. I am 57, female, disabled for 5 years from 2 failed back surgeries. Have 85% perm. sciatic nerve damage, scar tissue has smothered 85% of the nerve root so it get s no blood flow. I have lived in 10 and 10+++ pain scale for all these years. I am allergi c to just about every drug there is. If u see alot of typos, I am also going blind due too a tumor behind my left retina. I can barely walk, am hunched over like Quassi Motto-LOL, was diag. w rsd 6 mths. ago, feet were all purple/black, then up to mu knees looked like I stoof in a vat of Tomato soup! I thought the nerve pain was bad! Tomorrow I have the pleassure of being fitted for a back brace to try and get me up somewhat. I also have advanced Rh. Arth., gastric ulcers/colitis, rickets, yes people actually still get that!
so baiscally I am a recluse, I cannot walk more than a block, can't make it to the bathroom half the time in time, hell I do just about nothing, then I wonder why I am depressed, why I feel I am in quicksand up to my nostrils. I have been a jewelry designer for over 15 years, and even that has suffered the last few months because of my situation. I have no motivation, so I closed my store, just have all my work on Picturetrail. Am in 2 boutiques, but they are looking for new work and I just don't have it in me, or can't get it out of me! My hubbie will be a saint one day because another man would have gone out for a beer 4 years ago and never came back!!! He works construction, heavy labor, then does all the housework, laundry, food shopping, the only thing I do and I even suffer for that is dust and make dinner. That is the extent of my life, most my friends slowly deserted me when I could no longer go out to the flea markets, malls, movies, whereever, these were friends of 30 years, some friends huh? Well I guess I said enough for the first time, you are probsably tired of reading! If you are ever bored you can check me out at website link deleted in accordance with PainAid guidelines and in protection of poster. So thanks for listening, sorry if I carried on too long.
A.M.
Updated by pa_caroline on 04/07/2007 20:48 |
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Hey 4yearsinpain: You most definitely have a full plate and I soooo feel for you! None of us asked for whatever ails us and you have been dealt with an especially large assortment...We are here for you all the way, so glad you have found PainAid! As Pat Benatar once sang, "Life is a Battleground" and we the walking wounded do battle daily to survive. Know that you aren't alone my friend, even if you feel you are. Your hubby does sound like a saint! Not everybody has that, consider yourself blessed for sure!
We have a daily Chat in Conference Room 1 at 11 a.m. EST from Monday-Saturday. It's great support on a daily basis and you are more than welcome to join us. We can lift up your spirits, guaranteed and help you along the pain path. Wednesday evenings we Chat as well in the same room at 7 p.m. EST. In chat you can play around with the font size making visibility easier for you...sure hope to meet you there, I love my painiac friends both in chat and on the boards.
Please let us know if we can help you with anything.
I hope to see you around, and again, we welcome you with open arms 4years...
Hugs and miles of smiles,
Gootsie |
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Hi A.M.
I'm so sorry to hear of your troubles ~ it sounds awful. But, we're glad you found us and hope to see lots of you on the boards and in chats.
We hear you, we believe you, we care about you!
Welcome Aboard!
~Mary Anne |
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fouryears
welcome to pain aide
I have been dealing with pain for 30 years
and found this site last fall
The love and support here keep me going
try to come to the coffee chat at 11:00 eastern time
I ran a jewelry casting shop for 20 years
after pain forced me out of the foundry
I did production work for small designers around the country
and worked in everything from copper to platinum.
2 years ago I closed my shop and sold my home
now I live with my nephew
he takes care of me because many days
I can't manage the 7 steps to get downstairs
I wish you well
and look forward to seeing you in chat
Brad |
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Hello. I'm Nadia. I'm 34, married 11 years, have 2 kids and chronic headaches. I "used" to be an artist, it's always been my true passion, my escape. But for 7 years now, my headaches have robbed me of that and so much more! I've always been such an outgoing person, but now, I hardly recognize myself!
I've seen so many drs to only find limited answers that changed with each dr. I've had x-rays, cat scans and mri's. The first diagnose came from an otoryhnolaryngologist (I KNOW I spelled that wrong,lol!) who told me the headaches were due to extremely small drain ubes in 2 of my sinuses. two surgeries later, still have the pain and now a decreased sense of smell and taste!
Both my PCP and otoryhno guy told my husband (not to me!!!) That I was a drug addict. the specialist told me one day that I had a very low tolerance to pain, but when I told him my meds weren't helping enough, I became an "addict".
So now that's what my husband thinks of me. So I don't tell him about the daily headaches, but sometimes he picks up on the breakthrough ones and tells me to "get over it" or "you ALWAYS have headaches, you should be used to them by now"!
I really hope I can find hope and support here, cause I don't have it anywhere else. I'm SO VERY frustrated and angry and I just want my life back to the way it was before! (Not to mention all the damage I'm sure I'm doing to myself taking excedrin all day every day!)
Sorry I ranted! It did feel good to get it out though! |
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Welcome Nadia! You've come to the right place for support and understanding dear. I'm so sorry for your suffering, it sounds just awful. I don't have any idea what kind of specialist you're talking about there, but regardless, I can't believe that he and your PCP have the right to tell your husband you're a drug addict? What ever drug you were taking, they prescribed it, didn't they? Just doesn't sound ethical. Have you tried getting another opinion, hon? I'd recommend that, seriously. I know you say you've made the rounds with docs and diagnosis, I think we all have. But it seems you should keep trying if you're not getting the help you need.
I'm so sorry your husband is less than supportive, that's a terrible shame for him not to have faith in you. We in pain have enough stress without our loved ones doubting us.
There are many here who understand what you're going through. This is a wonderful, supportive and giving place Nadia. I hope you'll come back and meet everyone and talk with us. It's saved my sanity many times. Hope to see you around, Megan |
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Thank you so much. Right now we are without insurance (til Sept.) but my dear friend has recommended her drs. She was in a car accident and they deal with all aspects of her pain and suffering. I'm hoping to find the help I need there. |
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welcome Nadia
you have come to the right place for support
there are kinds of dx's on this site
but we all understand the isolation
that comes with cronic pain
we all have issues with our meds
wether they work or not
I'm glad you found us
Brad |
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Thank you Brad. I fel the same. I've read thru so many posts I can relate directly to. This seems like a very warm, "safe" place to share what I'm going thru without the fear of being judged! |
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Hello Nadia,
I'm so glad you found this place and wrote in. I just found this site a few days ago myself. I've had several friends who get Migraines and delt with others who get them. Those are terrible and debilitating. I've had one migraine in my life and it was terrible. Hope to never have another one. Wish you didn't have to deal with them either. I've had Terrible Pain for 11+ years though. My ankle/foot, leg, back, abdomen are where the worst pain is but it's also over my whole body now too. I went through so many different Dr.'s, while my pain and problems kept getting worse. I finally found a Pain Management Group that the Dr.'s and staff have been Incredable. They immediately knew what I had, when no other Dr's or Specialists could figure it out. I have RSDS.
Thank God my Husband has been supportive, but we know a few people at work who's Husbands' aren't. My Husband came to me one day, visably upset and told me about a woman He had just worked with, who was in so much pain all shift 12+ hours and told Him that Her husband was not supportive and didn't believe that she was in pain. Sadly that's the case with more people in that situation then in mine. I'm So Sorry He doesn't understand at all and has been missinformed.
If you think about it, only in the past couple of generations have we made real progress in the Medical field. Heck they didn't know about Blood (hardly at all), viruses, germs etc. and just in our lifetime they're begining to make huge strides in Neurology and pain issues. The increase in Pain Management and Researchers have began to make a big difference in the Treatments and Technology available to us. We're not left without hope, to be automatically committed to the mental wards with the key thrown away.
There is Help out there for You, but You need to keep up the good job of being persistant. Keep looking for a good Dr. who know's about Pain and how to help You out. They can also help give your Husband some concrete information so He may see what's really going on, based on Facts, not Dr.'s old Predjudice about pain drugs.
Sadly, most are still unaware, like your husband (so a lot of it's not His Fault either)(Doesn't fix the Problem, sorry) of the newer findings related to nerves and pain. Our system that deals with pain signals is so complex with no cut and dry answers how to fix the problems.
Keep looking for Help, information and support any way & any where you can. It'll pay off in the end!!!! It has for me. We struggled in the dark and still have problems, but it's easier with good Dr's and don't question your gut instincts too much, usually they're right. Take Care of You first If You don't take Care of Yourself, You can't help anyone else.
Your inner voice is very important, try to keep it positive, as positive as you can. Your Husband may or maynot come to believe you or become supportive, but try to make sure you find the care you need!! You can't control what he does, you have control of what You do though.
Hang in there, hope you find all the help you need through this site and other sources out there. Keep up the good work!
Take Care & Love ALWAYS!!!
Sincerely,
Slo, |
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Hi my i-net name is Tara, My RL name is Sarah. I am 24 year old mother of 3 (4y, 3y, & 4m). I have been married for 5 years to a wonderful man. We live in columbia co, florida. I first started to experiance pain when I was 14 due to scoliois (sp?). I had my first spinal fusion at 15 and a second when I was 19. The pain lessened for a time but came back, this time with a vengance. I was recently told that I need a 3rd sugery to fuse a spot in my lower back but was given only a 50-50 chance of getting any relief.
Before the pain became too bad I was starting a carrear in theater tech with a specitaly in lighting design. I had been offered jobs with major traveling groups like disney& stars on ice. I was set and ready to go but a few months before the super bowl in jacksonville fl I started to experance sever pain and started to loose strength. I fought for as long as i could but lost. the day I relized that I could no longer work in theater devistated me. My days now concest of taking care of my family and just tryng to make it through.
I am also in the procces of trying to figure out if there is not another reason other than my back, that is causing this pain. I have to say honestly with out the support that I have recived for others here that I would have just sat back and not spoke up to my doctor. I want to say thank you to everyone, it has really ment alot.
Tara |
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Hey mommyx2 and Tara_Nore: Nice to meet you here! Welcome to PainAid, the greatest place on earth! It's great to see that you've made your way around the boards and have found a comfie place. We all have the same thing in common one way or the other, pain...It can be a tough road to hoe but with the support of your fellow painiacs you're gonna be all right. At PainAid you'll make new friends, share your joys, sorrows and pain with the next guy. We hear you.
If you are able, we have a daily chronic pain chat: Monday-Saturday 11am EST. in Conference Room 1...the link is on the home page when you sign in.
Theres also a chronic pain chat Wednesday at 7 pm EST. in the same conference room 1. I love my daily support, I attend chat on a regular basis...If you have the time, we'd love to have you join us!
Again, we welcome you both,
Hugs and miles of smiles,
Gootes
Always Wag Your Tail! |
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I have been on vacation and missed welcoming the new ones, by each name, so Welcome to All, so glad you could join us. I am looking forward to reading all your posts and getting to know you.
Take Care
Teresa |
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Thank you from the bottom of my heart to everyone who welcomed me, and everyone here!!! I read your replies, and I just started crying tears of happiness. Just knowing that there are people in the world who not only understand me, but support me, it's wonderful, and what I have needed for so long. Although we may have different reasons for pain, we can all understand each other, and for that I'm so grateful. Thank you for sharing the spoon theory with me, I read it and cried, it's exactly how I feel! And I had my husband read it, although I'm not sure how he took it. He just read it and gave me back the computer, but at least he read it. Anyway, I'm going to share it with my family, and especially my kids, I think it will help them understand more what I'm going through. Again, thank you to everyone here, I will definitely try to go to the coffee chats, probably just on Saturdays because I'm at work during the week, but I will be there to meet more of the wonderful people here. Again and again, Thank you |
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Hello,
I found this site a couple of days ago and have replied to a few other topics or letters. Sorry if this is redundant. I just read a letter referring another person to introduce themself, so I fallowed the advice.
I'm 11+ years into RSDS, but was not diagnosed for a few years. It began with an accident on stairs and an injury to both my ankles and left knee with bumps and bruises all over. I immediately went to the ER and fallowed up with a Neurologist and several Dr.'s after that. Went through various splints, cortisone injections, nerve tests, surgery, Physical Therapy, Personal Trainers etc.. My right leg initially healed but my left leg continued to get worse, eventyally my right knee began to hurt again. Finally, a Physical Therapist and a Pain Management Group came up with RSDS, seperately, but in the same timeframe. I had never heard of it before, inspite of being in the medical field for years. We began to treat for RSD, by this time it was bad and had began to spread. I have it in my back, abdomen and prettymuch all over my body in some fashion. My skin all over my body was so sensitive I could not handle a simple Hug and clothes have been a real problem. I would've joined a nudist colony, but that hasn't been a viable option either, HaHa (Sorry).
We tried nerve blocks etc. at this point I have a (SCS) Spinal Chord Stimulator, in my lower left back/hip area and a Intrathecal Pump (I've seen some refer to it as a Medication Infusion Pump) in my abdomen left of my bellybutton. Those have been extreemly painful to go through, spreading the RSDS to those areas and it's taken years to begin getting relief from them. Every medication we've tried has had to begin at a tiny dose and increased in tiny incriments, it's been frustrating to say the least. I constantly have had problems with bad reactions to each medication and we constantly have to back way down & wait weeks or months to let my body readjust. I was finally getting a coctail of meds. in the pump up to levels I began to get some pain relief when the tubing sprung leaks and I went through withdrawls. We had to start over again from square one. Every medication had to slowly be added one by one all over again. I haven't reached the max doses of the 4meds we orriginally had in there, so my pain levels are still up there. At least this time I had a taste of some pain relief and know that life could possibly be tolerable someday.
I hope things can be better than what we had previously achieved and I'll keep pushing once we get there, but at this point I need to get back up to the mix we had before, which was Clonidine, Bupivocaine, Sufentanil, Morophine and oral medications, with the SCS in the mix.
Shortly after I had been diagnosed with the RSDS I was flipping through the channels (Immagine That!!!) and saw the end of what I think was a Senate Hearing with a Blonde Lady in a WheelChair, named Linda, pleading her case (with Dignity & Grace) for RSDS Funding. Like I said "I think it was the Senate". She said Her RSD had began 10 years ago. I sat there thinking, How Incredable it was that she was trying to make a difference and at the same time I was terrified, I could not immagine living with this RSD for 10 Years!!!! Now I'm 11+ years out myself and it's been terrible. I Thank God there is HELP out there!!!! I'm Glad I did'nt live back when there was no help but an insaine asylum, etc.
I've worked since I was about 9, began with Babysitting, and worked till this RSDS completely sidelined me in 1999. I was officially retired in 2006. I wish I could still work and it's hard to let reality in, even with the fact that I have a hard time dealing with the water comming out of the showerhead. I don't have the energy for normal daily functions let-a-lone working daily.
I'm entering a new phase of this, my teeth are curmblling and I need to find a Dentist in California who know's how to deal with RSDS. The one I've been seeing doesn't. I must say I'm not thrilled with this, but I'm trying to remain positive, as before. I'm so glad to have found some ino on this site about Dental Care with RSDS!!!! Thank You!!!!
I didn't intend to make this a novel, Sorry. I did'nt include everything, so if I forgot something important, please ask.
I Hope All of You with RSDS Keep Trying and Pushing Forward.
Take Care & Love ALWAYS!!!
Slo, |
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Welcome Aboard to Nadia, Tara (Sarah!), CB and Slo! You all are dealing with sooooo much ~ I don't know how anyone does it! One day at a time sounds so trite. But, we're glad you found us and we want y'all to know that we hear you, we believe you, and we care about you.
See you around the site and in chats and, again....
WELCOME! |
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Thanks,
Actually, I just read Your Staff Profile and was trying to send you an E-mail. It is one day at a time mixed in with minute by minute. I trully wish No One else ever had to deal with this!!! But I'm Glad so many people (with & without pain) are willing to help others!!
Take Care & Love ALWAYS!!!!
Slo, |
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Solrunner,
Welcome to Pain Aid, we are so happy you found us. We are here to help each other, and this is a wonderful place.
Take Care
Teresa |
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Hello,
Thank You.
You've been in the chatroom while I was in there, Thanks for a great experience. I've never been involved in any chatrooms prior to this site, so I'm grateful for everyone's patience with me. You all made it enjoyable and a good learning experience, in many ways, for me.
I'll continue to join in. Unfortunately, I end up loosing track of days and don't always log onto my computor, so I'm sure I'll have some timelapse's between visits. My poor Grandfather at one point this year asked me if I was offended at something, because He suddenly hadn't heard from me in 3 months. I felt so bad as I told him, I just loose track of time, between the med's and the pain. I had previously told him, but I havn't gone that long with Him before. I live near him which is nice.
Hope to see You again soon in the chatroom. You seem to have a great group of people in the chatroom. Wish we all had something else in common, instead of Pain mixed in with other things. At least everyone is so willing to include their pain in these discussions, much if life becomes about trying to forget or avoid the pain. This is obviously one place it helps to include it in the picture.
Thank You Again!!
Take Care & Love ALWAYS!!!!
Sincerely,
Slo, |
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Slo,
Yes I attend most of the chats, I really enjoy starting the day out with my friends, here at Pain Aid you will find that you will make friends for life.
We find ways to try to put the pain on the back burner, if only for an hour and that is what makes chat so cool.
I am so happy that you have found us, over time we will support each other through the good and the bad, we will laugh together, we will cry together, we will hold each other up with cyber hugs when needed.
I totally understand about the time lapse problem, it is so easy to forget what day it is when one is dealing with so much pain on top of everyday life.
Take Care
See ya on the boards and in Chat
Teresa |
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Thanks Again!!!
I look forward to seeing you in future Chat rooms. I've never been interested in the different chatrooms such as Dateing etc., but I must say I wish I had known about this one years ago!! It's helped me out already and if I can be of some help that would be great too. I don't want this pain to have been for Nothing.
I look forward to them. Thank You again!!
Take Care & Love ALWAYS!!!!
Sincerely,
Slo |
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Slo:
I'm a little behind in my welcome, as I have been sick in bed, but I've seen you at chat, so---WELCOME!! Welcome to our paniac world--We are so happy to have you, and I hope you decide to stay. We are like a big family here, and I try to make chat almost everyday, so I'll see you there!!
Warm Wishes,
PATTY{misswillieray} |
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Hi everyone
I'm sorry if I'm posting in the wrong place. I'm trying to understand how this all works.
I posted yesterday a little bit about myself.
I have fibromyalgia, chronic fatigue, B12 deficiency, low WBC, DDD, stage 3-4 kidney failure, colitis and have undergone many many operations I lost count.
Had 3 auto accidents all in which I was hit from behind with o one being serious 20 years ago enough to cause lifetime of misery.
Through all of this I have a wonderful husband, kids and Mom.
I don't know how they deal with me on a daily basis. I can not stand myself most of the time.
So that's a bit about me.
Sorry if I bored anyone.
Thanks for listening!! |
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I joined this site just this morning and put up a post on the pain board that I wanted to make new friends. So far no one has welcomed me so I thought I might have posted in the wrong place. I have had chronic pain for 15 yrs now, I have permanent nerve damage to my neck & shoulders from a bad surgery, osteoartheritis, degenerative disc,tissue & joint desease, Fibo, and chronic shingles, plus a host of other things caused from all of the above. I also have a very weak immune system that causes me to catch everything. I was forced to retire from my job due to my disabilities at the beginning of this year & am now trying to get on disability.
I love all animals, domestic and wild, have 3 dogs & 1 cat and an assortment of furry critters who live in my yard as well since I am in the country. My favorite tv show is Top Chef and I love to read and the great outdoors (tho my pain keeps me from doing alot of the things I use to).
I would love to make some new friends here for support, advice, and just plain chatting. |
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Hello to all I just joined the site yesterday. I've been checking out the site and found this spot and thought I would introduce myself. I have been suffering from chronic pain for close to five years now. I suffered a back injury and blew out three disks in my lower back. After having fusion/laminecomy surgery. I have not had a single pain free day since I had my back injury. About a year or so into recovery efforts and trying to get back to work I suffered a heart attack and had heart surgery. About six months after that I was diagnosed with fybmromyalgia and have been trying to cope with trying to have a somewhat productive life. I haven't been doing so great but the one thing I can be grateful for is my faith has gotten greater. If I didn't have my church family, God and my daughters I don't think I would be here today. It's been a long rough road and I hope to meet people here that can help me and vise versa. I really hope that I can be of help to and support for anybody here. I am looking forward to hearing from you. God bless all who know what it means to endure pain everyday. |
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I'm reposting my message because the last message I posted deleted my user name.
Hello to all I just joined the site yesterday. I've been checking out the site and found this spot and thought I would introduce myself. I have been suffering from chronic pain for close to five years now. I suffered a back injury and blew out three disks in my lower back. After having fusion/laminecomy surgery. I have not had a single pain free day since I had my back injury. About a year or so into recovery efforts and trying to get back to work I suffered a heart attack and had heart surgery. About six months after that I was diagnosed with fybmromyalgia and have been trying to cope with trying to have a somewhat productive life. I haven't been doing so great but the one thing I can be grateful for is my faith has gotten greater. If I didn't have my church family, God and my daughters I don't think I would be here today. It's been a long rough road and I hope to meet people here that can help me and vise versa. I really hope that I can be of help to and support for anybody here. I am looking forward to hearing from you. God bless all who know what it means to endure pain everyday.
papapat |
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allie_24, fairygirl & papapat
WELCOME!!!!
It's 9:43, and I am eating my dinner while reading your posts...it was a loooong day at work today. I hope that you all have had good days, and that we will keep seeing you back here on the boards often.
- Don't worry fairygirl, you can post to any place you want to-- sometimes folks don't check the boards for a while, and when you are new it seems like an eternity to wait for a reply, to be accepted. It sounds like you have quite alot on your plate; do you mind me asking how old you are? One of the two tv show I watch is Top Chef, because my GF watches it. (Can't stand Howie!) I am a huge fan of good literature, and like you, love the great outdoors but am limited by my pain. I hope that we have a lot to talk about!
- Allie, like I said to fairygirl, you can post anywhere you like, so of course it's not in the wrong place! What, may I ask, is low WBC? I am sorry to hear about all that you have going on, and all that you have been through. At the very least you have your husband, kids and mom. How old are your kids? I can understand the not being able to stand myself feelings; sometimes my pain gets me so cranky and whingey that I want to leave myself in the room and walk out. I know-- impossible, but I want to try!
- Papapat! Not having a pain free day really wears on you, physically and mentally. It sounds as if you have a good support base to work with though: God, church family and your daughters. I know that chronic pain has strengthened many other Paniacs faith, and you will see that reflected in alot of the posts on the boards. I am sure that you will be able to help others on the boards, and I hope that you get some reassurance and help from us. by the way- your original post came up as 'deleted user' because your sign in times out on you. If you tick the 'keep me signed in till I tell you otherwise' box on the sign in page, then you shouldn't have that problem again.
All of you should check out the Coffee and Evening chats. Coffee Chats are 11 am eastern, Mon- Sat. Evening chats are Mon 9pm Eastern and Wed 7 pm Eastern. It's a really great way to connect to other Painiacs; we usually laugh alot, and just talk about what ever comes to mind. Hope to see you all there!
Dannyn
PA_2Spirit
APF/PainAid Board Monitor
APF/PainAid Chat Host
Http://painfoundation.org
A United Voice Of Hope And Power Over Pain
The Views Or Opinion(s) Contained Herein Do Not Necessarily Represent Those Of Pain Aid Or The American Pain Foundation
Updated by PA_Gootes on 20/08/2007 14:30
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Thank you so much for the warm welcome! I am 60 and I hate Howie too-Ha! I think I am slowly figuring out how to manuver this cite thanks to some really helpful people here! |
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Hello All. My name is Paul, and I have put up with chronic pain since 1975. I am now almost 47 and deal with 1) Diabetic Neuropathy (both hands and right foot), 2) Amputation neuropathy (left BK stump) 3) osteoarthritis (all major joints and entire lumbar spine), 4) Fibromyalgia, 5) migraines (both optical and "traditional", and now 6) fistulitis from a fistula that is in my stomach and waiting to be removed on 8 October. I also have angina from coronary artery spasms that does not respond to any treatment.
It is very frustrating trying to find anyone who understands real pain, especially when I am already using all the non-medicinal methods that the pain clinic wants to use over medications.
I am a Registered Nurse, and try very hard not to use medications. However I know that proper medication will, in the long run, end up using less medication than trying to use minimal medication. It is time that our medical schools teach how to properly treat real chronic pain, finally realizing that proper treatment does not lead to addiction. Paul |
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Dear Paul,
Welcome to PainAid! We're so glad that you found us here. We once shared your frustration in finding people who really understand and PainAid is definitely the cure for that. There are so many folks here and we all have different types/causes for our pain, but you will find that we "get it."
Make sure to check out all of our discussion boards as well as our chats.
We have daily coffee chats every morning Monday-Friday at 11 am EST, plus evening chats on Monday at 9pm EST and Wednesday at 7pm EST plus special guest speaker chats.
We'll be looking forward to getting to know you.
PA_Carolina
APF Military/Veterans Pain Advocate
PainAid Board Team Leader
http://painfoundation.org
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hello, a good friend (Tani) told me about this site. My story is rather long, but I feel I need to let you know what I am dealing with. I am an unemployed 57 year old and a widow of 4 years. My son lived with me for two years after his father died and got me though my last back surgery and recovery period. He has moved out and now I am alone trying to deal with everything that is going on.
I have had five back surgeries (Laminectomies in 1986, 1999, 2000, 2001 and a spinal fusion in 2005) on my lower back. The last surgery left me with severe pain in my legs that physical therapy, steriod injections, and pain medications could not help. I went back to work after my 2005 back surgery, but could not get well enough to work full time. I finally had to take off using FMLA and living on my husband's life insurance for 12 weeks. I returned to work but could not sit for long periods due to the pain in my legs. I finally took a Medical Leave of Absence and while I was off my position was eliminated. I got really depressed about being out of work and could not really look for work due to the pain. I was finally referred to a pain management doctor who recommended a Spinal Cord Stimulator be implanted. The insurance approval process took two months to approve the trial and when it worked I thought I would be getting the implant in a week or two, but due to having to get the insurance to approve the implant it took another 3 months to get approval. Before I finally go the stimulator implanted I was hardly able to walk at all and having a terrible time finding pain medications that didn't cause severe side effects. During all of this, I applied for Social Security Disability which was thankfully approved in only 90 days. But as many of you may know, you don't get payments for 5 months after you are approved, so I was living on life insurance funds that were rapidly running out and was having to keep paying COBRA insurance premiums. PAIN and DEPRESSION were my only companions.
The stimulator has helped a great deal and I thought I was on my way to recovery when I began having pain in my right hand that has eventually spread to my arm, shoulder and neck. I have severe headaches in the lower part of my head just behind my ears. Since I have the SCS, I could not have an MRI so the CT Scan showed severe chronic degenerative disc disease at C4-5, C5-6 and C6-7 with severe lipping and spurring at C5-6 and C6-7. After going through the rounds of physical therapy, steroid injections, EMG's and more pain medications, I am now working with a neurosurgeon. I have had to have another CT with a myelogram and do not see the neurosurgeon again till next week.
I am loosing the battle to keep a POSITIVE ATTITUDE. My psychatrist says that I need to get out more and not isolate, but he doesn't get that the pain and lack of sleep really limit what I can do. I Hope this site will help with the isolation feeling. I am also fighting a battle in my head about taking the pain medication (OxyIR) because I am a recovering Alcoholic (20 years sober). I feel that I am not strong enough to beat the pain without help, but I don't want to become addicted to another substance.
I hope I get to meet many of you and maybe some of you can relate to my situation. |
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Welcome! (We have a mutual friend! ) Many things you said I can relate to. Other things, not so much.. But I do understand the pain! Boy do I understand the pain. Many of us do. Many of us are in the same boat when it comes to jobs, money, and pain. It, all together, makes it very hard to cope in any real way when you add the inability to get out much.
Here you will find hope, support, friendship and experiences.
Make yourslef comfortable wherever you go on the boards.
And Again, Welcome!! |
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Judychuck,
Hello, I am happy to meet you, it was very nice chatting with you in chat the other day. I am sorry to hear that you are having to deal with such a full plate of medical issues.
I have very progressive DDD, sciatica, neuropathy, OA, RA and the list goes on. I understand some of what you are dealing with, I know that you will be able to find many new friends here, we are a family here at Pain Aid, and I know that I speak for all when I say, welcome to our family.
Take Care
Teresa |
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Hi Judy!!!
It was very nice seeing you at chat this am--please do come back.
I promise you--if you keep coming back, that feeling of isolation will decrease. The chat is only an hour, but the good thoughts of your fellow"paniacs" will last you throughout the day. And, as you meet more people, you can exchange e-mails and/or IM's, if you are comfortable doing so. I've been here a year now, and joining{and staying!!} PainAid was the best decision I have made!!!
As far as your fear of taking opiates because of your alcohol history, please don't be a martyr and suffer in pain!! You've been sober 20 years and physical dependence is completely different than addiction!!! Of course your body will become used to the pain meds and create a certain tolerance. But that is totally different than addiction!!!
On the Off Topic boards, there is an "IM/Availibilty" board, that if you'd like, you can put your e-mail addy on there. Mine is on there, and you can contact me anytime, so don't feel alone!!!
Keep coming,
Patty{misswillieray} |
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Believe me I am NO martyr. I have been taking the narcotics as prescribed, but I as still afraid of what my mind can sometimes do. I fear beginning to use these meds in an inappropriate way. I noted my alcoholic recovery hoping there might be other recovering alcoholics out there that have a handle on this type of fear that could share their experience with me. |
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Hi I am Linda.
I have just been diagnosed with adhesive arachnoiditis and actually after researching the internet regarding this condition, I now suffer from shock, (they probably call that post traumatic stress disorder caused by the docs).
Looking forward to sharing with you in the future but for now may Grace, peace, love and joy come to us all. |
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Hey servant: Great to meet you here at PainAid! You make a great point in that we prolly all suffer from shock or PTSD considering what we once had is possibly now sadly lacking or downright gone. But we must keep up the good fight or all will be lost right? PainAid will help you along the way as you go...
If you can join us for Coffee Chat, it might help you through the day. It always works for me, I look forward to it daily. We meet in Conference room 1 Monday to Saturday at 11 am EST, Monday nites at 9pm EST and Wednesday at 7pm EST.
Glad to see you've tripped around the boards, Linda! Make yourself at home here, we welcome you with open arms.
Hugs and miles of smiles,
PA Gootes
APF Pain Aid International Board Team Leader
APF Chat Room Host
http://painaid.painfoundation.org
A United Voice of Hope and Power over Pain
"The views or opinion(s) contained herein do not necessarily represent those
of Pain Aid or the American Pain Foundation."
Always Wag Your Tail! |
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Hi Linda (Servant) Welcome to Pain Aid, it's great to have you here. You will find plenty of love and support from the members and PA's here, you are also welcome to join us in our daily chats Monday thru Saturday at 11 am est and Monday night 9pm and Weds night at 7pm. Again welcome.
PA_Racer
APF/Pain Aid Board Monitor/RN Nurse Consultant
All Information for Educational use only
pa_racer@hotmail.com
Http://painaid.painfoundation.org
A United Voice of Hope and Power over Pain
"Pain is No Evil Unless it Conquers Us," George Elliot
"The Views or Opinion(s) contained herein do not necessarily
represent those of Pain Aid or the American Pain Foundation." |
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And there is a personal info space too? Okay, here goes. '
My name is Marilyn, I live in Montreal, Quebec, Canada. I am 57 years old, no kids, 3 cats and 2 budgies who are loved as if they were my kids. I am presently on sick leave from two jobs. My favorite one is working with adolescents for Centre Jeunesse de Montreal. I work as an educator and the kids are in custody under child protection or under the Young Offenders Act. The places are residential and take place in group homes and detention centers both open and closed settings. My particular preference is working with the young offenders. Seems like tastes in people never change. I was always attracted to the "bad boys" when I was younger and here I am working with them. My other job is working with intellectually handicapped adults in work settings. Many of the clients are multicapped and can be in wheelchairs and many of them are non-verbal, a big challenge and/or have major behaviour problems. For the lower functioning individuals we have day centers where the clients come to give respite to their families. There we keep them occupied with activities meant to help stimulate and discover the abilities they do have. For the higher functioning, the goal is integration and so we have work training groups in places like factories, colleges and community centers. Here the clients do real work such as recycling, assembly line work, maintenance.
Because of the fact that I am on call at both jobs (my choice) my work is very varied. I never know where I am going from one day to the next and I love it. I have been doing this for only four years. Prior to that I worked at a crisis intervention center dealing mainly with clients who had mental health problems. At the same time I also worked at a group home for clients with psychiatrist disorders. I loved both jobs but felt forced to leave due to a dispute with the crisis center's director. I was sad at the time and still have not fully recovered from it, but am in my element working with this newfound client population.
I have been off work since March, 2007 with fibro and OA along with many other health problems too numerous to mention. I found Pain Aid prior to an arbitration hearing I was about to go to in which I felt totally hopeless and helpless. The support received from members here has been unending, profound, totally inspiring and encouraging and also life changing. I have learned so much and felt totally surrounded by love and support and managed to live through that day and I believe, won my case.
As for 'away from pain" interests, they are numerous such as dancing (something I had neglected but which I am staring to pick up again), movies, theatre, cooking, computer games, etc. etc. etc. I also have 4 websites but they have been very badly neglected. I guess that's it.
A MAJOR WARNING TO ANYONE READING MY POSTS - (I promise you, I am not yelling this, just emphasing it). I WRITE TOO MUCH - ALWAYS, EVERYWHERE. It is a major fault of mine, I have been faulted at work for it and yet I just can't seem to "synthesize". The words come spilling out of my mouth and I can't stop. If worst comes to worst, you can just skip over my posts as they are way too long.
So, if you have gotten this far, I appreciate it and want to say that I am very happy to become part of what seems like a close-knit, loving family who seem to have managed to see beyond there own pain, always at the ready to reach out to others. I aspire to become like them (you). Thanks for your warm welcome and lots of love and freedom from pain to all of you.
Hugs,
Marilyn |
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Bonjour everyone ! This comes to you from Canada specificlly the "Atlantic Provinces" . I am a 59 year old woman who has Fibromyalgia,Chronic Fatigue,IBS,Osteoarthritis L4,L5,Spina Bifida(occulta L4,L5) and a few more "whatever" which I do not wish to dwell on at the moment.
I own a very small business and all my energy is directed to that one area,yeah..so I am not balanced LOL. I have never been part of a message board before and I think that I would like to try it ..but then I would also like to ride a "hog" .Can anyone help me?? to join the message board not the hog!
Many thanks and I am looking forward to meeting many of you! (As many as possible )
Ladymv1 |
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Welcome ladymv!, good morning dear! I always wanted to ride a "hog" too. Never got to, got sick before I got the chance. So nice to meet you, when I came to this board, I was new at this also. The people here are wonderful, very kind and supportive. If you're looking for friends, info, and compassion, you're in the right place. These fine people saved me when I was in a very dard place because of my pain. I have intractable pain, a combination of SLE, Raynauds, fibro, osteo, CFS, thyroid disease,and worst of all, small fiber painful poly neuropathy (my hell). I'm 43, and crippled by pain for life. I've been sick for 18 years, but really disabled by it for about the past 5, the worst has been the past 3 since the neuro damage happened. Are you treated by a pain clinic? Do you function fairly well? How are your pain levels hon? There are a couple of nurses on here, so if you ever have medical questions, you can get answers. There are several chats during the week, I"m sorry I don't keep track of the times, but I"m sure someone else will come on and tell you all about them.
I imagine it's quite lovely where you live? Were an outdoors person before you became ill? I was, I have two sons and our family was always out and about.
Goodness, I"m bombarding you with questions, I should let you ask the questions, silly me.
Anyhow , I admire you being able to run a business with all you've got to deal with, you must be a very strong lady. Good for you hon. I hope we'll get to know more about you. Again, welcome ,welcome. Hope you have a relatively low pain day today. Again, so nice to meet you, Megan |
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RIde a hog!!! Raising hand here!! I wanna ride a hot.. LOL Actually.. being on the message boards for me, has many times been one of the only things that has kept me hanging on. I have been here since the inception.
Just jump in wherever you feel. People here pretty much accept everyone without judgement.
Welcome to Pain AId!!!
Glenda |
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Hi everyone,my name is Lisa and I am a 35 year old mother of 2.I was a CNA since 2002,started out in a nursing home and in December 05 I started private duty work.In March 06 I was getting my patient out of the tub and hurt my neck.Workers comp sent me for MRI and I had bulging disc and DDS level C4-5.I have always has spine problems and found out about my scoliosis in high school.While I was off work for the injury,I was diagnosed with breast cancer.I had bilateral mastectomies and 4 months of chemo,I was so sick I honestly thought I was dying.I got neuropathy in my left arm/hand from the chemo and the medicine I take to supress estrogen causes joint pain so bad that I cry sometimes.I still have pain in my chest and ribs from the surgery.I have a great pain management Dr and I take 3 40 mg Oxycontin,6 15 mg Percocet,300 mg Lyrica,3 Soma and 4mg Dilaudid when the pain becomes unbearable.I think it is horrible the way that chronic pain sufferers are treated.If only they had to walk a mile in our shoes... |
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I want to extend a hardy welcome to you. You have definitely had your share (if not more) of pain. I am so sorry that you suffer from all the pain that you do. We have a lot of nurses that come by here and I am sure that you will be able to share stories with them.
I have chronic pain from back and neck problems. I am currently 2 1//2 weeks out of surgery for an anterior cervical discectomy fusion with plates at C5-7. I also have a Spinal Cord Stimulator (SCS) to help with the leg pain. So, even though we don't have the same pain source, you can see that we both have the pain to deal with.
Take your time and settle in. There are a lot of good advice and some laughs to be had while reading the boards. We also have Morning Chats M-F @ 11 AM EST; Monday Evening Chats @ 9 PM EST; and Wednesday Evening Chats @ 7 PM EST. Please feel free to come visit at any chat time.
Take care of yourself and I am looking forward to getting to know you better.
Judy |
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Hi All
I'm Kathy. I found your site just the other day and really like it!!!
I am a 47 year old mother of 2. I have IBS, Microscopic-colitis, chronic pancreatitis and had a mini stroke 5 years ago. I had my first visit with the pain clinic 2 weeks ago and they suggested that I join a pain support group. Since I live miles from any support groups I figured online would work.
I hope everyone had a pain free Christmas!
Kathy
PS
Thanks for being here! |
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Welcome Kathy,
I am so glad that you found us. I wish it was under different circumstances. I wish that none of us suffered with the pain that we all have, but since we do have pain we need a place to go and talk about how we are feeling and get ideas on how to deal with the pain in our lives.
I don't have the same pain that you do, but I do understand your need to talk with others that suffer. My pain is due to Degenerative Disc Disease (DDD), and I have had 5 lumbar surgeries, a spinal cord stimulator implant (SCS), and just recently had an anterior cervical discectomy with plates and screws (ACDF) C5-7.
I know about living miles from support services. I live in rural Oklahoma and the ability to come here and talk about what is happening in my life has been a real life saver. There are people here from all over the United States and from other countries around the world. This group of people have become my second family and they are all very helpful.
Besides the discussion boards (which I encourage you to investigate), we have scheduled Chats Monday-Friday at 9 AM EST, and evening chats on Monday at 9 PM EST and Wednesday at 7 PM EST. I had never participated in a chat room before coming here and now I schedule my day so I am available at Chat times. We laugh, cry, scream or just be there to feel close to people who understand us. I hope you will join us when you can.
Again, welcome and I hope to get the opportunity to get to know you better.
Judy |
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Craigkat,
Hello Kathy, and welcome to pain aid, I do believe that this is the best place on earth and I truly believe it, there are so many wonderful, kind, caring and compassionate members here.
Take Care
Teresa |
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hi my name is judy and I am new to this site. It looks like I might find some information here and meet some new people with the same problem pain. |
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Welcome Aboard Judy0505! We hope to see lots of you around the discussion/expert boards and in chats! |
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Hey judy0505: Good to meet you here at PainAid! We're here to help you navigate the boards and offer support. You'll find lots of wonderful caring people here ready at the drop of a hat to help you out. You'll find that you aren't alone with the pain game, we're all sharing it together. Don't hesitate to ask questions on the various boards, 'tis why we're here We'd love to hear what brings you and your pain here, so please feel free to share with us!
Join us in Chat for daily support if time allows, we'd love to meet you. We share compassion and laughs and are always there for the next guy.
From the Pain Aid Home Page: http://painaid.painfoundation.org/Default.aspx?pageId=1 click on Chat Room in the side bar or Chat (or Conference) Rooms where you'll be asked to sign in again.
Conference Room 1, 11am EST Monday-Friday,
Monday 9 pm EST
Wednesday 7 pm EST
Unhosted Saturday and Sundays: 11am EST
The Chat Room is open 24/7 and is often occupied even during the off hours.
Be comfie here on the best place on earth! Hugs and miles of smiles,
PA_Gootes
APF/Pain Aid Team
A United Voice of Hope and Power Over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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well where do I start,
my name is Jim, I'm 46 years old and live in the Northwest. My bout with pain started in about 2003, at which time I was diagnosed with degenerative disc disease. then in about 2005 I started having burning tingling and numbness down my arm into my ring and middle fingers. 10/14/ 2005 after being sent for a cervical MRI. I was diagnosed with a Intramedullary spinal Cord Tumor at the C4/5 level. My doctor sent me to Seattle, Washington to see a specialist and 1/27/2006 it was removed in Seattle they were only able to get 90% of the tumor do to pending nerve damage, which I did end up with anyway good news is the tumor was not cancerous with the help of my doctor. I am able to lead a productive and quality life.
I chose my screen name Grappler because I trained in Brazilian Jiu-Jitsu (grappling) for almost 10 years I have not trained since about the end of 2004 at which time the pain I would have to endure after and during A training session made it not feasible and completely took the enjoyment out of it. Although I am still invited to visit the school from time to time and offer pointers to new students which I enjoy very much.
I've been around the board (APF) for a couple of years now, although I don't post a whole lot I enjoy very much reading all your posts and just knowing you are all out there is a comfort in itself. Thank you very much.
Jim, a.k.a. Grappler12000 |
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Welcome,
I am so glad to hear that the tumor was not cancerous. At least that is once less thing you have to deal with. I know that pain is a hard thing to deal with, but I am so grateful that I have not had to face a cancer diagnosis. You should be very proud of yourself for facing the possibility of cancer and doing what you needed to do to take care of yourself.
You are right when you say it is a good feeling to know that the people here at PA are going to be here when we need to talk, ask questions, share good and/or bad stories. I feel like I have found some really great friends here that allow me to be me (whatever that is on a daily basis).
Love your login name. My login came from a combination of my first name and my late husbands nickname. I just like to see our names together still. I hope you keep coming back and let us know how you are doing.
Take Care,
Judy |
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Hey Grappler ~ it's good to hear from you again! I always love to hear that folks are leading productive, quality lives in spite of their pain because it gives me such hope. Don't be a stranger, kiddo! We hope to see much more of you on the discussion/expert boards and in chats, too. Welcome back! |
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Judy & Mary Anne,
Thanks for the kind words. I appreciate your friendship.
thanks again.
the x-grappler LOL, Jim |
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Hey Grappler12000: I've wondered about you! I recall the link that you had previously posted...you and the tank, that brings back a smile for sure Wonderful that you can still offer your skills to the up and comings, what a great feeling.
Great to see you back, pain etc. and all... Enjoy your tour around PainAid my friend.
PA_Gootes
APF/Pain Aid Team
A United Voice of Hope and Power Over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Thanks Gootes, It's good to be back reading the boards again.
Thanks Again,
Grappler |
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Hi Jim and a hearty welcome back . When old times come back it feels like old home week . My mind wonders back to the good old days on the boards . I have often thought of how you and your son were doing . I always admired your true love for your family . How is your son doing ? Is he back from Iraq ?
Good to see ya . Dont be a stranger ......
Take care my old friend ,
Dre' |
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Dre,
Thanks so much for thinking of, and remembering my son.
He made it back safe and sound. and we were able to spend time with him over the holidays. which was absolutely great. as I think I mentioned before he turned 19 in Iraq and even though he didn't talk much about it and of course I would never pry. I know from talking to some of the guys in his platoon. he seen things a 19 year old should definitely not have to see. but he is a strong willed kid, my bad I mean young man LOL
The worst part is he has to go back again soon, we don't know exactly when yet but pretty soon, except this time it is a 18 month deployment But we will keep in touch with him as much as possible. well this is getting kind of long winded, sooo.
But thanks again for asking!!
Grappler |
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Hey Grappler!!!
So good to see you around the boards again!!
God bless your son, and if he is indeed deployed again soon, my thoughts and prayers go out to him!!
Please think about joining us at our morning coffee chats{11am EST--not sure what time it would be there}
Glad you came back--believe me, I know--I was gone for the past couple of months, and I really missed this place!! I am very happy to be back!!
Hugs,
Patty{misswillieray}
P.S.--if you'd like, you could post your e-mail addy and IM info--this way, you'll get extra support!!! |
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Hello and questions about intercostal nerve pain...
My name is Paula, and I am a 48 year old with degenerative disk disease in both the lumbar and cervical spine with multiple bulging disks and both and bone spurs narrowing the spinal canal in the crevical spine. I have a pinched sciatic nerve at S1. I also have rt shoulder pain after rotaor cuff surgery two years ago, both in the joint and bicep. I am unable to take any NSAIDS (cause angioedema) and am currently on 60 mg Cymbalta daily, and 10-20mg Baclofen TID.
About two and a half months ago I started getting pain radiating from the mid back to the chest area on the right side. Initially I thought I had shingles, had regular med appt with PM dr next day so talked to her about it. At that point thought I would break out in rash, but in case I didn't she went ahead and gave me order for MRI. Had MRI the next week, it didn't show anything. Went back to PM doc the following week and she dx as intercostal nerve pain and did nerve blocks at T5, T6, T7, and T8. Got good relief from mid back pain immediatly, but still had rib pain and pain more at T4. Second set of intections were on Mar 7 and she did T4, T5, T6, and T7. The back pain is better, but am still having rib pain. I am scheduled for the third set of injections next Monday.
Any information would be appreciated.
Thanks,
Paula (aka) tiggertoo_2174 |
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Hi there y'all!!!
I am attempting to ressurect this board because I think it is really important--especially for our new members.
If you'd like to introduce yourself here, and tell us a little bit about yourself---like what brings you to PainAid, what kind of pain issues you are dealing with, and what kind of support you would like.
We also have a chat schedule board if you'd like to joun us at some of our online chats. I know for me, the morning chats at 11am EST, that's a huge part of my daily therapy!!
Anyhow, my name is Patty, and I've been here almost 2 years now--amazing how time flys by!!!
I've been dealing with Fibromyalgia for about 20 years now, and my advice to any and all is to NEVER give up!!! I have an awesome pain Doc now, even though I have to take a 3 hr. train ride to see him--it's SOO worth it.
So, feel free to say hi and welcome to our wonderful paniac family!!!
Take care,
Patty |
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mrswillieray (Patty),
You are absolutely right! I read through this thread and it IS GOOD to know the story behind everyone that post on the board. We wish them well, provide support, pray for them, but don't always know the story. I've jut been here since June 12th. I introduced myself on the login page "after the fact" and read through that thread. I was so amazed at some of the stories.
So, MRS willeray, this PATTI is going to do what you want us to do. I will introduce myself officially after I sign off from this post! I'm SO glad you figured out how to change your surname! But, is it still willeray???? LOL
Patti
browneyedgirl |
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Hello everyone!
I'm Patti. I've been around since June 12, 2008! I've posted quite a bit and know some of you. But, I'm going to "officially" introduce myself on this thread. mrswilleray (Patty with a y) wants to re-activate this and remind everyone to do this, so I'm going to mind her after all, she is a MRS. and being from Mississippi, you always do what a MRS. asks!
I was determined to breed, see born, raise, break, and be the first to ride my very own horse. Oh, she is such a sweetie. I watched her be conceived, saw her be born, spent everyday with her and imprinted her. She was so gentle from the day she was born. Halter on her at 3 days old. I was the first one on her and she didn't do a thing! Just getting her to go forward was quite the task. So, I decided spurs very gently might nudge her along. She seemed to respond to the spurs and things were going very well. We built a brand new round pen in the pasture (her pasture). I couldn't WAIT to ride her in the new round pen as I had only ridden her 6 times in a friend's round pen. It was a cool, windy day in May (Wyoming). My husband asked if I wanted to wait until we had some soft sand hauled in. I said, "With HER? No way. She's not going to do anything." So, I mounted up, spurs on. The first thing I noticed was I didn't need the spurs. I was so excited and announced that to my husband. She picked up speed pretty fast. It was a metal round pen. Then, I noticed my spurs were clicking against the rail of the round pen faster and faster and faster. I tried to slow her down and she wasn't slowing down. So, I pulled the left rein around to my knee, which is what you do when a horse is out of control. It also keeps a horse from being able to buck or rear. She is a small horse, perfect for my height. Little did I know she was also very flexible. She was able to run and buck with her nose pulled around to my knee. It seemed like a LONG RIDE, but actually it was only a matter of seconds and I was in the middle of the round pen on my back. When I opened my eyes, her nose was in my face. It was as if she was saying, "What are you doing down there?" I said, "How could you do that to me?" I had quite a headache for a couple of days, but didn't think it hurt anything. I was still teaching full time. The 3rd day, I was on the stage practicing for the spring program with the kids, other teachers and the music teacher. I had hurt in my back all morning, then it moved around toward the front, and the pain got worse and worse until I was nauseated. I thought I had appendicitis or something, do I left and went to the E.R. The ER doc was a horseman, so he thought maybe I had bruised my kidney. They did a urine screen and I had blood in my urine. He asked me what the pain felt like and I said, LABOR! They ordered an ultrasound and there was a kidney stone. To make a long story shorter, I was hospitalized 3 times over the course of a month. I had 8 kidney stones that had been hiding out in my left kidney and when I hit the ground, it knocked them loose! OMG! Pain, pain, pain! So, did they look for anything else? NO!
Forward one year. Migraines increased tremendously, upper back pain, muscle spasms, burning, full body pain, etc. Physicians, neurologist, physiatrist, anesthesiologist, radiologist, etc. I had a tiny fracture in my cervical spine. Diagnosed with fibromyalgia ~ also had knee surgery 6 mos. prior to this, so half way in between the horse accident and onset of all of this other pain. Also diagnosed with MFPS. Drugs, weight gain, etc. Nothing helped. No opiates at this point, just nasty, weight gaining drugs that made me sleepy, inactive and depressed!
Taught 3 years full time in pain, them changed to half time. Referred to a Pain Management Clinic. Put on time-released opiates for chronic pain. Lower back pain started, inhereted our granddaughter, injections for low back pain for about 14 mos. RETIRED ~ got teacher retirement in full disability. SAVED me until SSDI finally went through.
Surgery #1 on lumbar. 7 months later, surgery #2 which resulted in arachnoiditis. Pain got really really much worse! Still suffered from all of the other things. 6 months later, had a triple cervical fusion. Took 27 months to get SSDI.
SCS in Jan. 08. Battery died in April.
Pain pump trial July 14th - successful
Pump implant date - July 29th SCS will be removed.
That's my story and I'm stickin' to it!
I'm an official "painiac". We have a 25 year old daughter (biological), a 17 year old adopted son. We adopted him at birth through Catholic Social Services. Decided two kids were enough as we went through SO MUCH to have kids. SURPRISE! Our daughter had a tragic event in her life and at age 4 months, our little granddaughter came to live with us. We adopted her @ age 17 months. She only knows we are Mom and Dad. She is 5 and will start Kindergarten in August. Our son will be a senior! LOL I'm the oldest K mom, no doubt! At least everybody knows me and knows our story as I taught for 21 years, most of it here!
Life is tough and sometimes little Victoria takes care of ME! My hubby and I have been married 32 yrs. this August. He's put up with a chronic painer a little over 10 years, but he does pretty good. He's a pharmacist and has a stressful job, Director of Pharmacy at the hospital here, nursing home, Chemical Dependency Center and Cancer Treatment Center. Although he has 2 other pharmacists and 3 techs., he still has full responsibility. I feel bad when he works so hard and extra hours, then comes home and has to do everything here.
Praying for pain relief from the pump, so I can be active again and at least cook, do some things like I did in my former life. This is the second year I've been unable to have tomato plants or do any kind of yard work at all. I'm a "garden fanatic"! Used to have a half acre vegetable garden prior to chronic pain. Very much was a workaholic. Quite a change for me since 1998! Activity level decreased gradually, but really went out the window after the summer of 2006!
I put myself in counseling last fall due to depression and decreasing meds. on my own accord. My counselor has been where I am and won the battle against a horrible back injury, pain, depression and a suicide attempt. She had to give up her job as an orthopedic PA due to her injury and became a counselor so she could help others like she was helped during her darkest hours. I am fortunate to have landed with her!
Now, all of you that joined up recently, let's here your story! MRS. willerary
says so!
Patti
browneyedgirl |
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Hey there Patti!!!
TY SOO much for helping me to kick off this thread!!! I am so sorry to hear your story, but I am confused over one thing. Are you on any extended-release pain meds, or any immed.-release pain meds???? I surely hope so, my dear, because you certainly DO qualify!!!
Do NOT hesitate to contact me anytime!! I added my info on the "off topic" boards.Patti, my door is always open...
Don't give up, ok???!!!
Take care,
Patty {mrswillieray} |
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mrswillarery,
Oh, thanks for asking. How can you possibly be worried about my pain meds when you have that 3 hour ride on a TRAIN to your pain doc? 15 hours round trip for an appointment? OH MY! I'm so glad it's worth it for you? I think 125 miles one way and 250 round trip on the WY/MT back roads is bad!!! I haven't driven myself for quite sometime, so a friend always takes me for regular appts. and hubby takes me for surgeries.
Yes, I'm on a Fentanyl Patch 25mcg and oxycodone for b/t. A year ago, I was on 75 mcg + Fentanyl lozenges and oxycodone, then decided to taper down. I think it made the SCS more successful and i KNOW it made the pump trial more successful. I wouldn't go back the other way because I know what physical tolerance is all about now. I backed down 25mcg every 2 weeks and never had any withdrawal symptoms. Stopped the Fentanyl lozenges all at once. That was the hardest part, because it's the ONLY thing that helps the leg pain. The IT Pump trial stopped the leg pain completely! Although I have lots of other pain, it's the leg pain that stops me in my tracks. It's nerve pain, muscle spasms, burning, tingling, crawling, aching and it's 24/7. If that can be stopped, I'll deal with the other pain issues. I can't take Lyrica due to Vertigo, but wish I could.
I'm guessing your wonderful pain doc in Manhattan prescribes pain meds. When I first went to the pain clinic I'm in now, I saw a woman who was an Internal Med. doc, then a physiatrist, then a pain specialist. She really got on top of things and found out everything that was wrong with me. Sent me to a rheumatologist (who was also first an Internal Med. Phys.). She confirmed the Fibro., OA, MFPS, then all the spinal stuff was confirmed and more discovered by my PMP. I felt like I wasn't crazy after all. There's something about a woman that's just different! She's gone now and I have a good PMP in the same clinic.
I'll be off the patch as of Tues. when the pump is implanted. Don't know about b/t meds yet, but I'm hoping I won't have to use them anymore than necessary. Relief is what I want. Pain meds. wasn't giving me relief from the leg pain by any means.
What else have you found that works for your fibro. After 20 years, you must have tried everything!! It is frustrating, isn't it?? New York is a good place to be, lots of physicians to choose from. I'm in the boonies, but we are lucky to have one good pain clinic.
Take care!
TTYL
Bye, now!
Patti with an i
browneyedgirl |
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Hello everyone I am new to PA. I have been an RSD sufferer for 8 years now. I have gone through much of what alot of you guys sound like. Nice to know I am not alone. I was married 14 years and ended in a divorce because I couldn't meet the needs of my husband and he wasn't an understanding person unless it was understanding himself. I have a wonderful grandmother whom my daughter and I live with, and I have 2 very special friends that are also my back bone and some days they are what keep me going. I am also involved in a pain clinic, I am completely disabled, I have lousy disability insurance and can't get Medicare because I am to young and didn't have enough work hours in the months before becoming considered disabled, I asked them how you accomplish the work hours if it took them 5 years to approve the disability and I was unable to work because of the disability, their answer was that is what the rules are (Great Government system we have). I get very little child support for my daughter because he only makes so much, and i don't qualify for food stamps or any other help that I know of because I am on the disability. Some days it seems like it doesn't pay to even get out of the bed! I do have a lot to live for my daughter is awesome but my days sometimes are really tough. I am currently having some knee problems. I had a knee replacement in 2003 and it has become loose and a piece of the metal came off and is in the back of my knee. I have been to 10 Orthopedic Dr.'s over the last 9 months and they won't do the surgery because my insurance won't pay then enough, soooo I live in severe pain with that also. I try extremely hard not to be grouchy but I don't always win that battle and I love my family more than anything and I wish I knew how to get passed some of these issues and make things easier for them. At 40 I feel awful to have to be waited on at times or to have to use them as my taxi service or slave is what I feel like at times. I wish I could do so much more with my only child. She has missed out on so much! She doesn't ever complain but I know she talks about what someone else does and says that must have been really cool for them and I know deep in her heart she probably wishes it was really cool for her. I do push through as much pain as I can to go above and beyond to be the very best Mom/Dad I can be, but i wonder when I watch her sleep sometimes if I loved her enough today? Wow I didn't know I had so many feelings bottled up until I started writing. I hope you don't mind, this being my first time, but then Thank You for listening. As many or all of you know we can't just talk to anyone and expect them to understand. Usually they look at you like you are crazy. It is nice to know I have found a place that I can maybe have some who will understand me for what I have and not treat me like it is a disease and then they run away because they don't want to catch it. Thank you for listening to me and I look forward to meeting some new friends. Mic |
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Hi mic and welcome to APF/PainAid! You are definitely not alone! Everyone here has a story similar to yours and their feelings are similar, too.
You've gone thru so much that I simply can't imagine how hard it must be on you. But it also sounds like you are doing the best you can, and I'm sure your loved ones know that and appreciate it.
It's true that those who are not in pain sometimes have difficulty empathizing with us, but around here you won't have any problems getting your point across!
We're glad you found us and hope to see lots of you on the discussion boards and in the chats.
Keep a good thought!
~Mary Anne
APF/PainAid Team |
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Hi, mic. I just read your message. You've been thru a lot, like me only worse. I am just rejoining this site; been gone a couple of yrs. Hope you can find some answers here and can find some answers for your severe pain. Talk you around the board.
Miriamsara |
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Mary Anne ~ Thank You for the words of welcome! I am very excited about finding this site and I look forward to a future of new friends. I have been reading alot and everyone here sounds wonderful. I can't wait to be a part of something else (beside my family) wonderful in life. |
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Greetings all. I am Emily and was happy to find a nice pain group where I can also learn more information about pain control. Just started a new pain clinic and having a hard time with this one...the doc does not like women! Thinks we should see a skrink and take more antidepressives...should have figured this when I saw only men in the office!
But, I am smailing through it all in hopes of relief soon. BEing in good company always helps.
Thank you for letting me join,
Sincerely,
Emily from the Carolinas |
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Hello old friends and friends that I will get to know! It's been about a year since I was here last. A lot has happened in the past year, but life is returning to normal. I posted on another part of the board, but thought I would post here too, just to be on the safe side.
I really missed the support I got here. I saw some names I remember and looked for others, I hope all are well. Maybe some one could catch me up.
So, my name is Sue, I have fibromyalgia, chronic fatigue and a bunch of other stuff. I am back to work as a Medical biller, full time, after three years not working. My co-workers do not know I have fibro. I decided to play it by ear and I'm glad I did. But that is a tale for another day.
I look forward to re-establishing relationships and making new ones!
suereadsalot |
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Hey Mic, cbethdalton and epoole59: We welcome you to our world of Painiacs, where we know you'll be happy! We all have pain in common so don't be shy and make yourself at home around the boards. We want you to feel right at home
We offer daily support and a smile in morning Coffee Chat, we welcome you to join us...we have evening chats too, to accomodate the different time zones. We meet Monday to Friday in Conference Room 1 at 11 am EST. Monday evenings, you'll find us there at 9 pm EST and Wednesday nights at 7 pm EST. You'll meet like minded people, we hope you'll share your pain and triumphs, and a smile or laugh goes a long way
Cruise around, get as comfie as you can, and enjoy yourself...make new friends, share your joys, sorrows and pain with the next guy.
PA_Gootes
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hey suereadsalot: Wonderful to have you back~! Always a good feeling when somebody reappears after an absence, it takes away the wonder and worry...Excellent that you've returned to work and here to PainAid!
See you around the boards...
PA_Gootes
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Thank you! Good to be back!
suereadsalot |
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I used to post to this site years ago but drifted away when I started feeling better. I am back again because I'm back in the same situation pain=wis as I was before. I am a retired woman dealing with chronic back pain. Had surgery in 1994 (fusion) and pain got worse after. Have been in pain mgt. for 10 yrs. I use morphine 3X day, 100 mg. & a lidocaine pain patch. But am back to spending a lot of time in bed because of the amt. of pain. I am considering another surgery because they can't do anything else for me and I don't want to live in bed again most of the time.
Miriamsara |
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Hey Miriamsara: We welcome you back with open arms! We've been here for you all along and will continue to be. Please make yourself right at home, and do share with us those good years that you experienced when your pain had lessened. We Painiacs are here to stand by your side and help you through the new emerging pain as well!
Stay strong, keep up the good fight and know that you aren't alone as you walk this the pain path once again.
PA_Gootes
APF/Pain Aid Team
A United Voice of Hope and Power Over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Thanx for your welcome. I will share those good years and the things I was able to do as I continue to post.
Miriamsara |
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Hello MRS!!
I sent a note to your e-mail. I posted another e-mail address for me, my old one is still in use, but I want to get away from it. After all, I'm not Joe's Bunny any more!!
Sue |
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Hello,everybody !
I've been here for a little while & have found all of the friends here to be understanding & good people !,so I thought I'd tell you a little about myself.
I'm a 55 + year old retired miner(Due to an inoperable back injury suffered underground).
Have been married for 30+ years to my Angel(wife) & have 1 daughter.
I don't even remember how long I've been dealing with chronic pain now,I do know I've been through Denial,Depression,Anger,Alcohol Abuse,Non-Understanding Doctors,the S.S. system,W.C. system etc.!
Thankfully I finally found a PCP that helped me find a way to get my pain to a bearable state & found all of my supportive family friends here!Whenever I go on the chat page my day always seems better & I look forward to visiting with my friends!
Both of my Parents have passed on.
I use to be involved in Mine Rescue as a Team Captain & I was responsible for training new miners out to go underground.
A lot of what I use to do I can't anymore!
I think I'm in the acceptance stage now,although just like with every other "Painiac" it is a day to day struggle!
You will like the people here!
HardRock Miner |
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Hi HardRock Miner,
Nice to read your posts and welcome to a great group. Wishing you all the best and looking forward to getting to know you.
Hugs,
Marilyn |
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HI I’m Karebear and here is my story and I’m sorry but I think it’s gonna be long and don‘t know if I should post the whole thing - but here goes. Do you all have a soda and a comfy chair??
Please bear w/me.
I was diagnosed with RSC/CRPS in 01/2003, 3 1/2 years after injuring my left shoulder at the gym. I thought that I had just strained the muscles so I continued to work out. It felt like the shoulder kept coming out of the socket. My Dr. started w/PT, no help. Had MRI that showed a bone spur and I had my 1st surgery to remove that in 4/00. While the Dr. was in (arthroscopic) he found that all muscles, tendons and ligaments were stretched out and damaged and would not heal by themselves and in fact my shoulder was falling out. More PT, no help, more pain. 2nd surgery 07/00 to tighten everything up. Immobilized 9 weeks, used ice machine 24/7, then PT, more pain. 10/01 to Chicago Loyola for release of muscles for frozen shoulder, PT same day and for months, MORE pain no help. New Ortho Dr. found torn bicep tendon and something wrong w/AC joint. 10/02 - more surgery to relocate tendon and remove part of Ac joint, more ice, PT and PAIN. With this Dr., Phy.Theripist and PM Dr. diagnosed w/RSP/CRPS 01/03. I had several blocks and meds. Vicodin, Fentenyl, Neurontin. Blocks only worked for a few days. Neurontin was no help, put on Zonegran. 3/03. Had some nerves frozen under ribs left side which started pain in my chest. It was decided that my sympathedic nerve & branches were to come out. This was done 11/03 as outpt but it was late I stayed over night. The next morning when I was getting ready to go home I was having bad chest pain. They found that they had punctured my lung and had to put in a chest tube, no numbing, no nothing. I had to have a chest tube for 1 week. The day I came home from the hospital I got really sick and after several trips to ER over weekend was re-admit. to hospital. I had a staph infection where the tube went in and couldn’t keep anything down. Not even ice chips. Took a week to find out the gall bladder shut down. They sent me home w/more meds to get rid of staph infection and build strength back up for another 3 weeks and on 12/23/03 another surgery to remove gall bladder. Now the RSD/CRPS is in lt shoulder, arm, hand (totally left handed) and spread full blown chest, esophagus, effecting my heart, breast and stomach from either having nerve removed or when chest tube was put in. I have to fight to stay above 100 lbs. because spasm etc. Removal of the nerves helped a little for about 12-14 months then PAIN got worse. And now I have read that if there ever is a cure they have removed my only pathway for it. 03/06 I got a SCS. It has help somewhat in the shoulder, and arm but now it has spread in my upper back where they put the wires and moving to the right shoulder. I had 2 leads on the left side of my spine. On Dec. 19 07 they disconnected 1 lead and put in a new one on the right side to cover my whole torso in hopes to give me relief . I’m running still at a 9-10 pain level constantly in my spine. I met w/my Advance Bionics tech and we tried to reprogram. We can not get coverage in my spine!! It feels like a hot steel rod, molten lava running thru my back. The only thing we came up with is because they removed my sympathetic nerve and there is no pathway for the signal. Now I know this is not done much at all anymore. At least for the past 15-20 yrs. And how often would someone run across this problem w/the scs and the nerve removal - Not often we think. Don’t know if I am making any sense here - I hope so. I am sooo tired and stressed and depressed and hurt, and confused etc. - nothing new to any of you I’m sure. I got the SCS to go off some meds. As of right now I take Zonegran, Toperal, Norvasc, Nexium, Norco, NitroQuick, AmbeinCR, Provigil (to clear fog during the day), Lexapro and Fentenyl. I have been anemic for years and recently it was found that I have next to no Vit B in my body so I am dealing with that to. The dr. does not want me do the injections because of the trauma so I have a nasal spray that I use once a week and take 1000mcg a day. I have severe Alidoniya to anything touching my back. Fabric, my hair, clothes, even the wind. I still work a fulltime job and it is getting very hard to handle it.
The SCS seems to be failing now and I’m not sure what to do. And now it has taken my right hand too. Every morning you wake up thinking “What next”.
I have been told by my pm that there is nothing more we can do for me but the pump. He is there for me whenever I need him and for refills. He is very good to me and I am thankful I found him.
I am married and have 2 children. A daughter 24 and son 22 and 2 step-children. A daughter 22 and son 17. I enjoy my modified 1950 Chevy truck, Car Shows and Cruise nites w/my wonderful husband. At the moment I still work but it is getting harder and harder every day. I do not sleep hardly at all.
I prolly forgot some things but this is confusing and is so long I am sorry for that but I tend to ramble sometimes.
Karebear |
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Hey Karebear: We are so happy you found PainAid! I have a comfie chair and a bottle of water...I'm glad you shared your whole story, it helps to unload but also to tell us a bit about yourself. You are making perfect sense! We understand the "sooo tired and stressed and depressed and hurt, and confused thing"! You're right, it's nothing new to any of us and its a constantly changing theme. It sounds like you've been down a very rocky road and are still walking it as best you can. Kudos to you for continuing to fight the good fight and being able to work! Wow, you have a full plate and I'm terrribly sorry for that. You aren't alone and PainAid can be a real comfort and support. You'll definitely find that here.
Be sure to join in on our ***NEW*** Specific Disorders board: http://discuss.painfoundation.org/topiclist.aspx?cbbsid=60 , you'll see you have a lot in common with other members. We welcome you, cruise around, get as comfie as you can, and make new friends, share your pain with the next guy, it helps. Know that there are others out there that feel the same way. If your work schedule allows, try to join us in chat for a bit. A meet and greet and caring goes a long way and helps on a daily basis. It always works for me, I look forward to it daily. We meet in Conference room 1 Monday to Saturday at 11 am EST, Monday nites at 9pm EST and Wednesday at 7pm EST. Click on the Home tab at the top and chose Chat/Conference Room 1. Hope to meet you!
If I can be of any help, please drop me a note, happy to help!
PA_Gootes
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Thank you for such a warm welcome. I can try to make the evening chat. That would be nice. Might have to pull me out of my shell some as I am quite shy. |
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OOOPPPs hit enter - anyway - very nice to meet you and I hope to make many friends.
karebear |
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Hi, my name is Les . I've had peripheral neuropathy since 2004 .The pain has escalated to the point where I'm on pain meds 24/7 , with no relief in sight . I'm also a diabetic and have arthritis, cervical and thorasic spine damage , and I had a triple bypass in 2007 . I'd like to talk to others that are chronic pain sufferers .
Les |
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Dear Les,
Welcome to PainAid! There is definitely no shortage of chronic pain sufferers here. There are various causes for the pain (if diagnosed), but we all faces many similar issues.
We're so glad you found us and hope that you'll join in on the great discussions here. We also have live daily chats - Monday-Friday at 11am ET, Mondays at 9pm ET, and Wednesdays at 7pm ET.
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hi. my name is Fran. I am on a chronic pain narcotic therpy program with Oxycontin extended release and percocet 5 for breakthrough pain. My issue is the ability to work? Does anyone work if they take narcotics? (other than those that work with illegal drugs on board) |
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Dear TheGammie,
Welcome to PainAid! I'm sure many pain patients still work who are prescribed opiates for pain control.
I think that being upfront with your employer - or potential employer is the best policy.
Educate them on your challenges -- ask for a flexible schedule -- etc.
We have a lot of publications with information - especially to help you explain that just because you are prescribed opiates, it doesn't mean you're an "addict."
Anyway - check out our publications and use them as a tool for communicating with employers, family members, friends, etc.
http://www.painfoundation.org/page.asp?file=Publications/Index.htm
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hi y'all! After reading through all these introductions, I realized mine was one of the old ones that just kind of went *poof* so I thought I'd better re-introduce myself. :0)
My name is Angela and I'll soon be 43. Married nearly 21 yrs and have two grown children.
It's a long story about how I found out what was going on with me, so I'll spare you all the gory details. In short, I didn't receive any injury that I can remember, it's just something that has developed over many years and has forever changed my life. My current dx's include DDD, DJD, bilateral spinal stenosis, level 2 bipolar disorder, asthma, severe allergies, scoliosis, sciatica (caused by the nerve being fused between my L4-L5), and several herniated discs. And the pm doc has recently dx'd me with failed back surgery syndrome although I can't for the life of me, figure out why as I've never had back surgery. lol
I've been on many, many meds over the years including Lyrica, Methadone, Darvocet, Vicodin, Lortabs, Flexeril, Neurotin, Arthotec, Ultram ER, Lidoderm patches, and probably some I've forgotten about. I currently have a spinal cord stimulator which helps tremendously and only take Ultram ER and Arthotech now for pain (not that it helps a heck of a lot, but it's better than nothing at all). I'm allergic to almost all the NSAID's (arthotech still causes tummy upset so I'm on meds to help with that too). I finally gave up my job in late 2001 and currently am on SSDI after a 2.5 yr fight to get it. I do sometimes do taxes to help out my friends and help make myself feel more productive. I have hobbies I try to keep busy with, when I feel up to doing them. They include crocheting, knitting, cooking, candle and soap making, and I can't get enough to read. :0)
I can be found in the chat room here during the 11 am coffee chats, which I enjoy very much. Depending on the hubby's work schedule, I'll stick around during the afternoon as well just to see who might pop in and want to chat a bit. I love all my PainAid friends and they've become like family to me. So if you're looking for a supportive environment and even if you just need to vent a bit, you've come to the right place and I welcome you with open arms! I look forward to getting to know all those here better and better as we all continue our fights to get the care we deserve!
Take care y'all and catch ya on the flipside!
Angela/tndrft001 |
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Darn board signed me out so I'm the deleted user before this post. lol
Hugs,
Tndrft001 |
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Hiya Angela,
It was nice chatting with you the other day.
Nicole |
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lol - tndrft - that thing is possessed sometimes
Thanks for re-posting your intro!!
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hi--I'm a 56 year old ex-RN who went on disability about 5 years ago because of ankylysing (sorry sp) spondylitis, ex total hip and spinal fusion with severe pain, also fibromyalgia, bipolar, and a handful of other diagnoses. I think based on my symptomes I probably have RSD, but I live out in the country, 8 miles from a tiny town with limited medical resources. Love to read, write poetry and short stories, almost all music, my 3 cats and Boston terror (terrier, really, but she truly can be a terror!). I live with my "significant other", who is 52 (almost 53), and still works fulltime at a lumber yard in spite of 2 heart attacks and 3 stents (I might have gotten that backwards--I get mixed up as to if it's more mi's than stents or vice versa). Wanted to ask about my eye--woke up this a.m. with right eye swollen shut and most severe pain of my life, tears flowing nonstop. Took morphine 120 mg to get me clear enough of the pain to be functional. Do I schedule an appointment with primary dr, oopthalmologist, neurologist, who? I thought it might be trigeminal neuralgia, but have never (in 30 years!) seen a patient with that disorder, so not sure. The sooner the better as far as if u could answer--am starting to feel the pain thru the morphine and so up in the air as to how to handle it!
Hello to everyone and God bless! shy |
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Hi there For You to Wonder -- cute name!
Welcome to PainAid! You need to be sure to check out our Off Topics board -- We have a Writers Corner that you are sure to be interested in.
Plus - We have Pain & Creativity activities all the time -- submissions on our website and also thru HealthCentral with contests - recognition of your work, etc.
We're so glad to have you!
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hi to everyone. I am a severe pelvic and abdominal adhesion sufferer. I often feel quite alone. I have a wonderful pain clinic now that takes fairly good care of me. Yet it still terrifies me that I must take strong medicine to even rise in the AM, and that I periodically melt down enough to end up in the hospital. My pain medicine is now not lasting the month and I fear we must change, or I am worsening beyond help, or...who knows....I don’t even want to admit this to my pain clinic for fear of how it looks.
I have long since learned that people with chronic pain are basically labeled at once and that label never goes away. It is the most erroneous societal view of what it means to actually be ill. And I don’t feel “ill,” I feel “broken.” Argh…
I have followed this website for some time now. I have never written in, until now. I love the new interface. Thank you for that and thank you for the help. You are more help than you know to those of us in pain. We should say it more, I know.
Anybody else out there with hideous guts?
vryder |
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Welcome to painaid! The community here is awesome, and it sounds like you could use some friends who truly understand what it is to spend your life in pain.
Thankfully, my IBS, acid reflux, and other gut issues cause me minimal pain. My pain comes instead from a horrid hip (gotta love illiteration) and fibro. They actually think the fibro was triggered by the hip pain reaching a sort of critical mass, if you will. I also have carpal tunnel in both hands, as well as moderate-severe asthma. I like to joke the first person to find a part of me thats not broken wins a prize.
I've found that when dealing with people who know nothing about being ill, being willing to laugh about it helps them talk about. They are more likely to ask question and try to understand when theres laughter and humor involved. I find a good many of them walk away and think about it a bit more in depth later. Will they ever truly "get" it? Not without living it. But it's a start.
I sympathise with the feeling of being broken. I often tell people I'm totally broken. I find if I can say it with a smile, though, it bothers me a teeny bit less. I am only 22, and I will always be broken, so it's my label to wear and to have fun with.
Sadly, you do need to have a conversation with your pain clinic about trying a new pain regiment. You should approach this conversation with an open mind and hope, and ask for "relief", not meds. Especially not any one med by name. Asking for "relief" and "quality of life" often helps the pain clinic see that you truly want those things and not the drugs. It's often drugs that give us those things, so it's hard to remember to ask for them by that different name.
Also, have you ever tried TENS for relief? If its helped you before, you can get a portable unit that can been worn up to 24 hours a day. My other advise would be to try massage. A good massage therapist might be able to help with the adhesions and give you some relief in the long run. My theory is, any relief that doesnt involve a pill rocks.
Good luck and let us know what happens! |
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I'm not sure if my guts are hideous... but reading your post made me fell less ALONE! I suffer with nerve pain of the right leg, back and pelvic area...nonetheless I feel exactly as you do. As a nurse I well aware of the stigmas placed on chronic pain sufferers...and I have been certified in Pain management as a professional....
STILL I get that same sick feeling every time I talk to my doctor's office, even if just to have a form filled out for SSDI or assistance until I am approved for SSDI...let alone telling them I am out of pain meds before my 30 days is up... I also find myself second guessing myself and asking to be switched to other meds in order to avoid "addiction", yet I am in pain...90% of the time... and in excruciating, non-verbal sobbing dramatic pain 10% of the time...
You would think I would know better and be better equipped to handle the burly office manager who won't look at me as a person in pain, instead of a drug seeking low life who wants to sit at home and live off of the government.
Hang in there and make sure you take someone with you as an advocate if you feel apprehensive about expressing your level of pain... Sometimes a friend or loved one can put it into words better. If not change Doctors...even people in healthcare can be not nice people. Good luck and thanks for sharing!! |
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Hi!
Was so happy to see a board that dealt with pain management issues. I have had back and leg pain since 1999 (the year I retired). No doctor actually knows why I have the pain, although it was found I have two "tarlov" cysts which most doctors have never heard of. I had a "spinal cord stimulator" placed in my back in 10/08. I had it taken out in 5/09 because it wasn't helping the pain anymore PLUS and this is a BIG PLUS, I had to have an arthoscopic surgery on my right knee because I couldn't have an MRI due to having the "spinal cord stimulator" in my back..3 weeks after surgery I developed MRSA in the knee joint. The pain since then has been unbearable in both knees and also the pain is still in my back. The MRSA just destroyed that knee. I was on infusion antibiotics for 6 weeks. Took four bottles a day(2 bottles and 12 hours later another two bottles).
I went to a new family physician today because my former physician left his practice to be the director of the VA hospital. This new family physician mentioned to me a program they have for a new medication that you take by infusion about every 8 weeks. Don't know anything else about it. He said he would get this "pain management" person to call me about the details. I am interested in that since my pain is always there.
People who do not have chronic pain day in and day out do not understand the toil it takes on you mentally and physically. I am the type of person that basically wears makeup all the time, clothes have to match with the jewelry, etc. Other words, everyone thinks I don't have a pain in the world since "I look just fine".
I will enjoy reading the comments on this site.
Nanajo |
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Welcome to painaid!
Several of our members have SCS's for various reasons. They have also talked about the difficulty of dealing with other health issues since you can't have an MRI.
I'm curious as to what sort of oral medication you've tried- things like oxycotin, morpheine, extended release tramadol, lyrica, cymbalta. There a lot of oral meds out there you may have never tried. I worry when you talk about an infusions that once every 8 weeks, since the only infusions for chronic pain that I've heard of are all experimental and hotly debated. I recommend doing alot of research before agreeing to such a thing.
Also- have you ever tried warm water physical therapy or massage therapy? Both can offer wonderful benfits for pain relief, and both are very safe.
Good luck and welcome to the site! |
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It took me a while to find out if I had any replies or not, but finally understood how to do it.
I am on Lortabs (3 per day). This has been the only pain medication that works for me. I have tried many others, epidurals, etc. My main pain now is in my knees. I did get a call from this clinical trial that is being conducted for specifically knee pain. They have a home site (one of many over the country) in Clarksville, TN so I wouldn't have to drive very far to take the meds. I have written them to see what phase this trial is in. If it is in the Phase IV I will probably try it. I wouldn't try Phase I, II at all. Too many things could happen. They have had good results with this medication so I feel like it is in the later phase of testing. They said they already know the medication works, they are now working on the dosage.
It would be wonderful to be pain free just for 6 months. I can barely walk when I stand up and if I stand up too long I can't move. I am only 59 so I feel like I need to investigate every possible road to a life without really bad pain.
Thank you |
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People who do not have chronic pain day in and day out do not understand the toil it takes on you mentally and physically. I am the type of person that basically wears makeup all the time, clothes have to match with the jewelry, etc. Other words, everyone thinks I don't have a pain in the world since "I look just fine".
That is called masking. I think many of us do it. I know I do. I don't care how bad it is, I have a hard time letting anyone know. I cover my limp by practicing in a mirror. Most of the time now, it is second nature to me. I don't groan (too much) and my husband gets upset because I won't tell him when enough is enough so he can help me.
Smiling when it hurts so bad you want to crawl into a bed and just cry. Walking without showing the limp causing more pain. It is all just that, a mask to keep people from knowing how bad it really is.
I don't do the make-up thing, but I do things I probably shouldn't do to keep what little muscle tone I Have.
Yup, you have come to the right place. People here really understand!
Welcome
DW |
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Hi! My name is Heather and i live in indianapolis indiana. i was Diagnosed with fibromyalgia about 5 months ago. i have been on a lot of meds. none of them for pain. I recently started calling my DR> to ask for a refferal to a Rhuemy but the 3 times i have called i have gotten no response. I have had serious flares, but she said she does not beleive in pain meds. I am frustrated. i work 40+ hours a week and care for(as much as possible0 my 5 children.(husband works nights) I don't know where to find an open minded DR> i just know i cannot bear this pain. Cymbalta helps somewhat. Lyrica made me depressed, angry, and flared my pain more.Any Suggestions to find a good Doc. Most sights just have Rhuemy's which require a referral. thanks |
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Unfortunately, most rhuemys and pain docs will require a referral. If your fmaily doc wont do it, is there any way another doc would? Maybe even your ob/gyn? It's a reach, I know, but a referal is a referal, and I know my ob woiuld do anything to help he patients. Which brings me to another point- for many women, their cycle makes the pain worse- have you ever tried a long cycle birthcontrol like seasonique? I have been on it for 6 years and its the best med I have ever taken, period.
I was dx'd with fibro about 4 months ago, on top of sevre pain in the R leg which resulted from a series of major hip surgeries (cause everyone should need a hip replacement by the age of 17- lol). I have not yet had my replacment thanks to my young age (22 now), but I look forward to the freedom of movement it will give me when I finally have one. I wa dx'd with fibro by a pain doc when my ortho onco finally sent me off for pain management. Best thing a doc has ever done for me, to be honest.
Good luck getting in to see the docs you need to see. |
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Greetings. I just signed up, a bit late I guess after having read several of the last APF newsletters. I'm glad I found you all because, as you can tell from my name, my lower back (surprise!) is a mess. I just got the bones fused last Nov. Like most of you I spent many years just learning about what medical science could (and could not) do for my severe pain and damaged disc, nerves, and spinal cord. I started out in 2001 with basic sciatica at the L5 S1 site that affected my lower back and right leg. I have spent many weekends lying in bed with my arm over my face in shame and uncotrollable tears running down my cheeks as my wife looked on in utter disbelief. The two hardest things are to accept that you have such a nasty situation in life, and to explain to others, even those close to you, what is happening. Now with the surgery I have reduced the pain from severe to moderate, but I find my self more depressed and frustrated than ever. My plans are to see if I can find something more about Pain Management or some other answers besides the darn handfulls of pills we all take. I look forward to some interesting conversations with you all. |
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I'm thrilled to hear you were able to lower your pain with surgery. For many people thats not possible, and I'm very happy for you that you were able to see that kind of reduction in pain. I wish you luck in dealing with the rest of your pain. Welcome to painaid! |
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Hello, I am Sam... or Samelia. I just joined and was overwhelmingly greeted and welcomed in this am's chat. I am just finding my way around (this site and my journey of pain and disability) and open to any suggestions, ideas, etc.
I am 28 y.o. female nurse from Florida... I injured my back a few times I'm sure, but the "straw that broke the camel's back" was in October of 2008. I was off on a 30 day leave for Severe anxiety, panic attacks and was having a "good" day... I went out to my yard, which had been neglected with my anxiety, depression and broke my back, literally. I had the best day...
Unfortunately I haven't truely been able to stand up since. Just applied for SSDI in July and am now going through the motions. I am just now starting to try to get some help from some county and state programs.. One being rental vouchers...
I lost my house to foreclosure end of May (because of all this) and have been bouncing around from Mom's to girlfriend's, etc. I just didn't think until now, that I needed, deserved, could get help with having my own place...small as it may have to be. I was well spoiled..unmarried, no kids decent paying gig as a nurse working only 3 days (of course they were 13+ hrs) and never imagined myself as a patient, homeless (m.o.l.) with no car and welfare dependent. Here I am!
I am attempting swimming at the Y and beginner's yoga at home, with my PCP's Rx plan in lieu of PT, Pain Management... not because I'm trying to be different but because, my savings in gone and I'm already leaning on the family, friends financially, emotionally, etc.
Anyway, looking to meet some new online friends to bounce ideas off of and learn the ropes of chronic pain...Mine is from herniation at L4-5 -S1, as far as I know. it is excruciating Nerve Pain affecting my Right leg especially... I seemed to be doing better with New meds (Lyrica) and then all of a sudden out of nowhere (3 weeks ago right after my last Dr.'s appt.)... the bottom dropped out and I can barely walk from living room to bathroom. Getting into a vehicle to head out is now causing sobbing fits and pain so bad I think about unspeakable things...
I know as a nurse no one should suffer this... but as an anxiety ridden chronic pain patient with no money coming in, I feel helpless and hopeless at times. So, I'm here trying to do something about it! HA! Hopefully I'll meet some cool people along the way!!! |
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I'm not sure why I showed up as a deleted user? |
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Hello, I am Sam... or Samelia. I just joined and was overwhelmingly greeted and welcomed in this am's chat. I am just finding my way around (this site and my journey of pain and disability) and open to any suggestions, ideas, etc.
I am 28 y.o. female nurse from Florida... I injured my back a few times I'm sure, but the "straw that broke the camel's back" was in October of 2008. I was off on a 30 day leave for Severe anxiety, panic attacks and was having a "good" day... I went out to my yard, which had been neglected with my anxiety, depression and broke my back, literally. I had the best day...
Unfortunately I haven't truely been able to stand up since. Just applied for SSDI in July and am now going through the motions. I am just now starting to try to get some help from some county and state programs.. One being rental vouchers...
I lost my house to foreclosure end of May (because of all this) and have been bouncing around from Mom's to girlfriend's, etc. I just didn't think until now, that I needed, deserved, could get help with having my own place...small as it may have to be. I was well spoiled..unmarried, no kids decent paying gig as a nurse working only 3 days (of course they were 13+ hrs) and never imagined myself as a patient, homeless (m.o.l.) with no car and welfare dependent. Here I am!
I am attempting swimming at the Y and beginner's yoga at home, with my PCP's Rx plan in lieu of PT, Pain Management... not because I'm trying to be different but because, my savings in gone and I'm already leaning on the family, friends financially, emotionally, etc.
Anyway, looking to meet some new online friends to bounce ideas off of and learn the ropes of chronic pain...Mine is from herniation at L4-5 -S1, as far as I know. it is excruciating Nerve Pain affecting my Right leg especially... I seemed to be doing better with New meds (Lyrica) and then all of a sudden out of nowhere (3 weeks ago right after my last Dr.'s appt.)... the bottom dropped out and I can barely walk from living room to bathroom. Getting into a vehicle to head out is now causing sobbing fits and pain so bad I think about unspeakable things...
I know as a nurse no one should suffer this... but as an anxiety ridden chronic pain patient with no money coming in, I feel helpless and hopeless at times. So, I'm here trying to do something about it! HA! Hopefully I'll meet some cool people along the way!!! |
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Every once in a while that wonderful deleted user thing happens. It's no big deal- did it to my intro post as well. I think it has something to do with getting logged out then still be allowed to post somehow, but thats just a guess.
Welcome to painaid! Sorry I missed you at chat this morning- I just started a new job today, so no morning chats for a few days for me while my boss and I figure out how to turn chat into my lunch breaks.
I have a bum hip- long story- and fibromyalgia. I find working getting more difficult already, and I"m only 22, so I know your frustration. Thankfully, my pain is still well controled enough to allow me to work and my loss of abilities barely affects my work at this point.
I'm so sorry to hear your in so much pain. Do you use any kind of walking aid? I know some people with back issues find help with a cane or a walker and it def sounds like you'd qualify for an electric wheelchair, which could really give you back some quality of life. Several people I know with electirc chairs have a specailiased van that has a ramp out the back so they "drive" their chair straight up and into the van then drive with all hand controls. Its an expensive modification, but once you get your money sorted out, which will come with time, you may find ti an option for you.
Also, you may want to try massage therapy and pt once you get the money sorted out. Def cheaper then the van thing, but for some people with back issues, they can be life savers. Warm water pt has been especially helpful for several of the members here.
Don't be afraid to tell your doc the pain is beyond destroying your life. You need use specific words like searing, burning, stabbing, throbbing, aching, etc to get your point acorss. Theres a lot out there as far as pain control meds, such as oxycontin and morphine, that has the potential to really help you. You may need pain management to get the help you fully need, so dont be afraid to try it.
I wish you the best of luck with everything- especially getting your life back. |
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Hi. I'll Becki. I was diagnosed with severe rheumatoid athritis a year ago. |
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Hello Becky!
I am going to say welcome to pain aid for everyone. I know there are a lot of people with your condition so, as they told me, jump right in.
DW |
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I've had RSD since 1998. It's now in both lower limbs as well as fibro in the rest of my body. Recently a caregiver who got angry at me for firing her, called my case worker at SDS(Senior & Disabled Services) here in Oregon and told her that I was injecting my meds! obviously, this was a lie, but the worker decided to believe her and told my doctor. 5 weeks later, I have no doctor, no meds and am at the end of my rope. The pain is just more than I can handle and I'm afraid I'm never going to get treated again. any ideas???
THANKS!
cinnamarz |
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Welcome to painaid!
Clearly, you have to find a way to clear all of this mess up. Did they ever check you for signs that you were injecting yourself? There are nearly always clues left behind when a person is doing that sort of thing. Have they found any proof of syringes or the other supplies that you would need for such a thing? I hate to say it, but your going to have to be very proactive in fighting this and stand up for youself big time. It's exhausting, emotionaly and physically, to do something like that, but it's often the best choice. You might need to involve a lawyer to help you out at some point.
Good luck in getting everything figured out. RSD and fibro are both evil things. I myself have fibro, as well as a massively bum leg, and bilateral carpal tunnel. Pain can destroy your life at times, but we're stuck, so sometimes, you just have to make a new life. |
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Hi. I'm a 30-year-old female who was in a car accident in 2007 when a man ran a red light and hit me. My car was totaled and my airbags went off. I turned my head apparently and when the air bag hit me, my neck got jammed hard to the left and it tore my back and neck muscles. Ever since then I've had severe upper back and neck pain, which has also started radiating to my lower back. I have nerve damage and sometimes get shocks in my hands and base of my skull. I've been to 3 different PT places, 2 chiropractors, 1 acupuncturist and saw 7 other doctors related to this injury. The doctors all say that I didn't break any bones and just have muscle damage. I feel that I'm treated like a drug seeker most of the time to the doctors that don't actually touch my back. My chiropractor, acupuncturist and physical therapists all know how bad my back is though, but I still don't feel that my doctors are helping me. I was put on oxycodone/apap 5/500mg for a few months and then when they refused to give me that because they said that usually my type of problem should be gone in 6 months, I sought another opinion and was then given tramadol. I've taken Tramadol since then until I ran out last week and now am in tons of pain. Because I haven't seen my pain mgmt. doc in 6 months she would not issue me a refill, so today I had an emergency appt. with her PA. He issued me a script for Relafen, which I really hope works. I've also tried Lyrica, Cymbalta, steroids and many other NSAIDS, all of which do not help. The only thing that works for the burning pain is Tramadol, but yet for some reason I was switched. I really need help trying to find something that works for the break-through pain and how/where to find a good physician in Baltimore. |
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Hello and welcome to PainAid.
To answer you regarding resources in your area you can follow the links provided below and hopefully one can really help you:
http://www.painfoundation.org/learn/ >> http://www.painfoundation.org/learn/locator/
There are many organizations that may be able to recommend a physician to help you.
As for asking for medication, we have found through our own experiences and many of the members of PainAid, that if you ask, some physicians will consider you a drug seeker. Personally, I will ask for pain relief and let them know that I will do anything they say to get it. At first, I had to go through a lot of the things I had already tried, but eventually, we found a combination of things to help.
Hopefully this helped. Please make sure you check out our boards as well as our weekday chats (11 AM Eastern- 12 AM Eastern) as well as our two nights a week chats (Monday evening @9:0 Eastern and Wednesday evening @7:oo Eastern.
PA_Fun
PainAid/APF Team
A United Voice of Hope and Power over Pain |
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Welcome to painaid!
There are extended release forms of tramadol that act for 24 hours, so its one pill, once per day. These are much better for long term users since its a most consistent level in the body- the ups and downs of short acting can affect your liver and such. The two brands I know of are Ultram ER and Ryzolt. I personally prefer the Ryzolt- I've taken both brands for long periods of time. Please feel free to mention to you pain doc that the tramadol works very well for you, and you've heard of these long acting versions, and you wondering if it might be an option for you. Don't mention brands unless they bring it up.
Tramadol is normally considered fairly safe- its barely considered a schedule 3 opiate in some states, and isn't considered to be an opiate at all in others. Because of it's rep for being "mild" in comparision with alot of pain meds, its normally a first choice med for those who fail on things like lyrica, or to be used in combination with them (like in me).
I'd start seeing the pain doc every month, on the dot. This is typically a great way to prove your serious about your pain management, and to gain their trust. If they ever ask you to sign a narcotics agreement, go for it. They can sounds scary, but they often help protect the patient as well as the docs, whichs allows for more room in what meds they'll give you.
Good luck!
Daapy |
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Hi everyone, new to the forums but not to chronic pain. I'm a chronic pain sufferer with lower lumbar disc degeneration, L-4-L5 disc herniation and other lovely attributes I've finally won my case for disability and am now trying a new pain management doctor. I'm hoping by joining this forum I can educate myself so I know as much if not more then my doctor. |
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Welcome to painaid!
Educating yourself is one of the best things you can ever do for your health- congrats on starting the process! I've learned loads from the people here. The combined experience with doctors, meds, therapies, surgeries, and tests here is amazing and it's great to be able to tap into all that knowledge. |
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Hi. I feel the same way as Daapy does. Welcome to the site and I am happy you found us
DW |
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Hi My name is Mike and I have RSD/CRPS for 15 years and was wondering how other sufferers cope with this dreaded disease.Thanks for any info.
Mike1024 |
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Hey Mike, Welcome to painaid.
I know there is at least one place, maybe two or three, that discusses RSD.
Pain is all through the site. Everyone is always talking about how to deal with it and get help.
http://discuss.painfoundation.org/topiclist.aspx?cbbsid=57http://discuss.painfoundation.org/topiclist.aspx?cbbsid=57
I think that link takes you to the one place that talks about it the most.
See you around the boards and make sure you check out the chats.
DW |
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Welcome newbies Hope, Mike, jz, & cinnamarz! We're glad you found us and hope to see lots of you around the boards and in chats. We hear you, we believe you and we care about you!
~Mary Anne
APF/PainAid Team |
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Hello Everyone,
Unlike many, I think I have a good pain doctor but my concern right now is about medial branch nerve blocks. I had my first diagnostic one in my neck last Tuesday and am having another one on Monday. It was very painful! If they help, he will 'burn' my nerves in my neck. Has anyone had this done? Was it helpful etc?
( I have cervical radiculopathy, by the way. Two years ago I had three discs replaced and fused - c3/4,4/5,5/6. I have bad nerve pain in my neck, arms and hands. I have just given up my job as a guidance counselor, because I felt I was just dragging myself.)
Sincerely,
Laila |
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I have never had it done, but here, I have heard both bad and good. I would just go through the topics on all the boards until you see what you want. I haven't ever checked the search thing.
Welcome to painaid
DW |
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Welcome to painaid!
You might want to ask for twilight or other "happy juice" (relaxant) for the next injections. If they treat the anxiety and make you a bit out of it, it might help you deal with the pain of the injection. Also, make sure these injections are being done under fluoroscope!! Do NOT let them do blind injections into your neck or spine.
Like DW, I have never had to worry about having nerves burned. My pain is not the sort that can treated through a procedure like that. I have heard mixed reviews from people here about such procedures. If you look around on the forums, your bound to find some good info about such a procedure.
Good luck! |
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Hi, my name is Sharon -- been struggling with what has been dubbed for the time being Chronic Myofascial Pain for the past 5 years. Thought I was really headed towards a "cure" (ha ha) through myofasical release therapy, yoga and pilates, but I have had some big setbacks lately and feel a bit lost. Just a lot of pain that kind of moves around my body -- one day I'm kvetching about my piriformis, then my neck, then my abdomen, then my psoas, then my hips, then my shoulders, you get the idea. I've decided to try and go see a rheumatologist and a pain management doc but I don't think I have fibromyalgia or arthritis or anything...I take Advil a lot and I've been taking Klonopin occasionally which helps my anxiety and pain a bit but still feeling down and lost about the whole thing.
sharogold |
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Welcome to painaid, Sharon! This is a great group of people, who truly care for each other and cheer each other on. Enjoy our insanity- it's the fun kind!
We have chats every weekday at 11am EST, and Mondays at 9pm EST, and Wednesdays at 7pm EST. I, and many others here, find the chats to very helpful. We talk about everything from pain to other health issues to dogs demanding tummy rubs.
I'm glad to hear you've been very proactive in trying to find the answers you need. It sounds like you're very comfortable embracing "alternative" (non-drug) therapies, which is excellent. For you, the answer may lie in the combination of something like Lyrica combined with the therapies you already have seen success with. Massage therapy may also be beneficial for you. Alot of insurance comapnies will cover MT if you jump through their hoops. For my insurance, that means having it done on the order of, and under the guidance of, a chiro. |
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Hi, I'm new to this web page. I introduced myself under the
Diagnosis & Treatment section. I'm sorry for it's length and it's rambling style, but I would appreciate it if anybody would take the time to read it and respond. Your support and advice would be extremely appreciated.....Thanks.... |
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Hi, I'm new to this web page. I introduced myself under the
Diagnosis & Treatment section. I'm sorry for it's length and it's rambling style, but I would appreciate it if anybody would take the time to read it and respond. Your support and advice would be extremely appreciated.....Thanks.... |
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Hello Dan and Welcome to PainAid. I am sure that someone has already read it and either replied or mulling over the problem to give you an idea of what they have gone through.
Again, Welcome to PainAid and make sure you check out all the boards as well as our chats.
PA_Fun
APF/PainAid Team
A United Voice of Hope and Power Over Pain
Pain Aid Chat Schedule
Chat Room ONE
Monday 11:00 am - 12:00 pm (EST)
Host: PA Namma
Monday Evening Chat 9:00 - 10:00 pm EST
Hosts: PA Carolina
Tuesday 11:00 am - 12:00 pm (EST)
Hosts: PA Gootes & PA Susie
Wacky Wednesday Chat 11:00 am - 12:00 pm (EST)
Host: PA Namma
Wednesday Evening Chat 7:00 - 8:00 pm (EST)
Hosts: PA Gootes & PA Fun
Thursday 11:00 am - 12:00 pm (EST)
Hosts: PA Gootes & PA Racer
Friday 11:00 am - 12:00 pm (EST)
Host: PA Carolina
Saturday and Sunday
No Hosts: Open Chats
Chat Times For All US Time Zones
Monday-Friday Morning Chats
11am (EST)
10am (CST)
9am (MST)
8am (PST)
7am (AKST)
Monday Evening Chat
9pm (EST)
8pm (CST)
7pm (MST)
6pm (PST)
5pm (AKST)
Wenesday Evening Chat
7pm (EST)
6pm (CST)
5pm (MST)
4pm (PST)
3pm (AKST) |
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I have lived with undiagnosed chronic leg pain for over 30 years. I have seen various specialist and had different tests done, and a cause has not been found. A few days a week, I have intense pain in both my legs ( the right side is a always a little more painful). I have tried different medications and nothing works. I feel desperate for help, each day gets harder. |
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Welcome to painaid!
I find it odd that the pain is only a few days a week. Have you had full spinal mri's? If the pain isn't constant, it seems like it could be coming from nerves getting trapped somewhere. Most pain syndromes and the like produce constant pain, os it doesn't sound like any of those. My mind just keeps coming back to nerves being caught somewhere- some days they aren't as entrapped, other days, they are completely pinched. I'm not a neurologist, or even a medical professional, so thats just my guess.
Any which way, painaid is a great community. We have chats every weekday from 11-12 EST, monday nights at 9pm EST, and wednesday nights at 7pm EST. Feel free to come join us. |
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I don't know what you have tried for relief, but it almost sounds like something a massage therapist can help you with.
There is a really good therapist here under the expert's section, you might want to ask PA Maria.
DW |
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Hello all, [img]http://www.anchoredbygrace.com/smileys/wave.gif[/img] just found the site, and I am so glad to see an online community for pain sufferers like myself!
I am married, mother of 2 teen boys, and I am very close to my family. My condition is undiagnosed. My problems started about 2 hears ago with some pain and tingling in my hands. The pain got worse, the moved to my feet. Then my legs. I also became week, very cold natured, and felt tired and worn down. I was fired from my job after missing too many days, and sloppy work--- I am welder. I have been tested for many things... MS, Fibromyelgia, Nuropathy, Arthritis, etc.
I have changed doctors twice. I take a lot of medications, and this has been hard on my family emotionally, and financially. Lately I have been feeling blue about my situation, but I try to stay positive and pro-active.
I am in pain 24/7. It NEVER stops. I am very glad I found this site. Ive known of course that I am not the only person in the world with conic pain, but it is welcoming to make contact with others.
[img]http://www.anchoredbygrace.com/smileys/party.gif[/img] |
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Welcome to painaid! This place is full of great people, who really care about each other. It sounds like you'll fit in quite well!
Undiagnosed pain is very difficult, as is under treated pain. My doc didn't believe I was in pain and I essentially had to demand vicodine, and then tramadol, for 4 years, despite having had 4 major hip surgeries and having the hip of an unlucky 80 year old- at the ripe old age of 22. The time I had spent on crutches damaged my hands- we think it's bilateral carpal tunnel, but no testing has been done. And having so much under treated pain finally triggered fibro. Their best guess is, I have the genetics to make me prone to it, and the under treated pain was the stress my body needed to tip me over the edge. I was finally sent to a pain managment doc, which was great for me. He was the one to dx the fibro and get me on real pain meds. My pain isnt low by any means, but its more level and thus, eaiser to deal with.
My best advice to is to get tested for lime disease. Even if you've been tested before, many commerical labs miss a huge precentage of cases. You need to have your testing sent to a lime-literate lab. PA Maria, our massage expert, knows far more than I ever will about the subject. Feel free to drop down to her area under the experts panels and ask her about it. Outside of lime disease, I have no clue whats causing you issues.
Good luck finding answers and chasing around 2 kids while not feeling well. Feel free to join us for chats on mon-fri 11am-12pm EST, Monday nights at 9pm, and Wednesday nights at 7pm. Chats are a ton of fun- sometimes we goof off, sometimes, it's all about supporting each other. It all depends. |
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Welcome! It's great to see new faces and we're glad you found us. PainAid is full of wonderful, supportive people. Undiagnosed or undertreated pain can certainly be very draining.
We hope you will be encouraged and recharged by your participation at PainAid.
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hi all! I have really been through the ringer and could use some help on what to do...I have Fibromyalgia and RSD.
Recently I had to fire a caregiver who was really messing up. Because I fired her, she decided to ruin my life, and has! She called my caseworker with SDS(Senior & Disabled Services) and told her that I was INJECTING my meds! I can't believe anyone would do something so horrible to another person, but because of this my doctor immediately dropped me and refused to give me any more meds.
I have not had anything besides motrin for pain in over 2 months. Medicaid has sent me to 2 other doctors who also refused to give me meds and dropped me, now the nurse at the insurance company is saying that she can't find me a doctor. I am really at the end of my rope and don't quite know what to do now.
I seriously doubt I can go on much longer.
Please, please if anyone has any ideas for what I can do, it would be GREATLY appreciated! |
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I think I've seen you around before, but Welcome again! It's great to post your basics here, since it's an easy place for people to find them.
I'd consider getting a lawyer to go after the woman for defamation, because thats what her behavior is. Some laywers will work where they dont get a dime until they win the case for you- which, in your case, wouldn't be until your getting proper care again.
I'd mention it to any doc that wasn't it odd she didn't report you for anything until *after* you fired her? Didn't that smack of revenge? Also, be willing to come in as often as they want you to at first- even if its once a week or whatever. If you take your meds incorrectly, the levels in your body would swing so wildly it'd be pretty easy to track, I'd think. Also, any abuser would go through their meds way to fast and always test for levels higher than what they should have. A simple pill count at appts and urine test could tell them your not using the pills to fast and your not buying extras off the streets.
I hate that docs tend to take the word of anyone over that of the patient, but it happens. Also, with any new doc, don't ask for meds. Be willing to try lots of therapies that may or may not work. A true addict would be pushing constantly for opiates. I know the pain is horrible, but if you dont ask for meds, you may be able to gain a docs trust and finally be put back on meds that can help you. Sadly, our need for the meds to lead a sane and even semi-comfortable/tolerable life can be taken as addiction, which makes our desire/need to ask for what we need a detriment.
Good luck with everything and hopefully, something works for you. |
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i am new to this site and am seeing what it is all about. I have 2 fractures on my L4 vertebra from being kicked repeatedly. I have tried accupunctue, chiropractor, meds,and sometimes now matter what i do i am still in alot of pain. this has been going on for 1 year |
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Hey there and welcome.
We are all either pain patients or caregivers I think. A lot of people will have some great thoughts on what will help. I tried some of the things I didn't think would help and they did!
Good luck
DW |
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Welcome to painaid! It's a great group of people here, who truly care about each other. We talk about everything from crazy kittens, to therapy, to meds, to goofy kids. We have chat weekdays from 11am-12 EST, Monday nights 9pm-10 EST, and Wednesday nights 7pm-8pm EST. They're great.
I'm so sorry to hear your pain is from abuse. Pains never good, and to be able to point a finger at one person and say "It's all your fault" has got to make it even harder. Just know that we're here for you.
Are you seeing a spine specialist and a pain management doc? Some pain docs are actually spine docs and some are anestheologists. Mine is a spine doc, despite the fact my spine is fine- it's the rest of me that doesn't work- lol. Pain docs tend to be the most up to date on new therapies and methods for treating pain, as well as what meds to try or not try with certain kinds of pain. Like-I'm on tramadol for bone pain and lyrica for nerve pain. Tramadol doesnt work on my nerve pain and lyrica doesnt touch my bone pain, so instead of putting me on long acting opiates, my doc went for a combo of lower level meds. They've been working for me so far. |
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My name is Walter Buck, I am retired HMC/USN.RET. I am glad to find a board to get possible answers to my lingingering questions as they arise concerning pain management. I have been in pain for over 18 years, controlling it has/had been a difficult task. A long time I have found water aerobics pain medications to be a lost. But the new medications coming out, on the market is a hope for both myself, and I a hope for you. Thanks again for being here, and I hope the future will be promising.
wbuck |
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Hi.My name is Pat. I guess I did the whole thing backwards.But, we've all made mistakes. I suffer from severe dystonia along with R.S.D. I have a major problem finding a Dr that doesn"t think I'm malingering. I am sooo tired of the numbskull rhetoric, it makes me sick! Ihave a family Dr who referred me to a neurologist that acts like he doesn't know what the heck is going on. He rushes me in and out of the exam room, he continues to tell me Iam on the wrong meds for my pain. The problem is, Ihave been on this patch now for 6 years and I have adjusted to this dose. He will not hear of giving me anything more for increased pain nor will he give me anything for breakthrough pain. I feel like I am fighting a losing battle and I am not going to keep suffering like this. I have a right to be treated and he looks at me like he doesn't care. I am getting verty upset when I know it's time to go for a new prescription. Why do I have to keep fighting these folks. Please just help relieve my pain. Please. I am very TIRED!!!!!.
painey10 |
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It sounds like it's time to change doc's. I'd look around for a new doc and make an "interview" appt with any who sound like a potential new doc. Let them know when you schedule that you just want to talk to the doc about possible switching. Go into the appt with a list of well thought out questions. Ask about what sort of treatment plans they'd want to try, etc. If you like what the doc has to say, then switch. If not, then all you've done is waste a few hours.
I'm considering doing the same- my little brothers old neurologist has become a pain doc only 15 minutes from where I live. My current pain doc is okay, not my favorite, and is over a 1 hour drive. |
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Hey, Welcome to painaid. I have been here about 6 months or so and I have to tell you that this has been a life saver for me.
I hope that both of you find the support and the wonderful people here as much of an aid to you as they have been for you.
Don't forget the chats everyday and on monday night and wednesday night. |
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My name is Barb,and I am from Baltimore. I have had 10 surgeries in the last three years and have suffered from chronic pain since. I have had a 6 surgeries on my hip and eventually a total hip replacement. 7/1/09 ALIF on L4/L5 and was accidently OD in the hospital and and now scheduled to have neck surgery on C3-C7. I am on 45. My life has been a living help the last couple of years trying to live with the pain and trying to work full-time. There are times when I wish my husband did not catch the OD this July. Because I finally would have been out of my misery. But life goes on. My fusion did not entirely work, so here I am back in pain again. Sorry to dump, it has been a very bad week. |
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Hello and welcome to PainAid.
Here, it isn't dumping, complaining or whining. It is venting, letting others know you need support and, hopefully someday, the pain you suffer will ease enough for you to help others here.
It doesn't matter to anyone here know what you suffer with. You hurt and all of us care.
Do post on the boards where you feel comfortable. Join us in our chats Monday-Friday @ 11:00 est.. We have two evening chats, Monday @9:00est and Wed @ 7:00 est.. We would love to have you join us for support, fun, and real time caring.
PA_Fun
APF/PainAid Team
A United Voice Of Hope And Power Over Pain |
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We all have our bad days, and they are never fun. I'm so sorry you're dealing with this.
I've had 4 hip surgeries in the last 5 years- actually, all 4 were in 3 years. The first 3 were in under 12 months. I understand the horror of the pain of a bad hip. I wish they'd replaced mine. Instead, when I shattered it, they opted to do something even more painful and repair the bone since I was so young (17). Those first 2 weeks are a total blur of pain, meds, and agony. I hope your surgeries were much easier, more like my other 3.
Welcome to painaid and good luck with everything! We're always here to listen. |
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I am trying to find a discussion board on the pros and cons of having double total knee replacements. I am 59 and both my knees are in horrible shape and I can barely walk at all. I am thinking about having both of them repaired at the same time. The pain has become unbearable. Have tried cortsone and all the joint fluid injections (chicken shots). Nothing is helping so I know I have to have the surgery.
Thank you
Nanajo |
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Hi
I think you can start a subject under any of the boards. Then people can answer you and maybe give you the answers you are looking for.
DW |
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Welcome to the boards!
I have to say, I have good knees still, but I have a bad hip, which means I've spent a good chunk of time in PT. I've met many knee replacement patients at PT and haven't heard from 1 yet that they regret having it done. One man said he felt better at only 3 weeks post-op than he had in 5 years.
Obviously, this isn't the case for every patient, but over all, I have heard great things about how much pain relief a total knee replacement can bring. My 42 year old uncle is having a knee done over christmas, after having needed it 6 years. He said he finally decided to have it done because he could hardly walk his dog and he knew people with total knees who hiked 20 miles a day.
Good luck! |
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Thank you for the message. I am praying I will be one of those people that will feel like another person after surgery. I am just miserable at the moment with tremendous pain day in and day out.
Thanks again
NanaJo |
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A friend of mine had both knees done at the same time and is a new person. She told me it was well worth the short time pain she was in. I worked with this lady and knew how she suffered and she is a totaly different person now. She is relaxed and HAPPY now and pain free.
Best of luck to you.
Patsy |
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Hello. My name is Patsy. I suffer from savage pounding, throbbing pain is my feet and legs. I also have a pinched nerve in my thigh and if all this is not enough, I also have an impingement in my right shoulder!!
The pain in my feet and legs is caused by permanent nerve damage at L4& L5 where I have a fusion and now scar tissue from that surgery.
I also have a fusion in my cervical spine but have never had any problems with it and it did relieve my neck pain.
I have an SCS implant but it has failed me and is being removed Dec 1st. (more pain??yuck!)
I am here to offer kindness and understanding to others who suffer as I do.
I live alone but I am not alone. I have my darling little dog Pepper who sends a tail wag to everyone.
Cheeers
Patsy |
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Hi .. Good to 'meet' you. Most of us have a bunch of pain for a variety of reasons.
I know I have gotten lots of support and laughter too. Both of those were rare in my life and I have to admit, this place has saved my sanity.
Welcome on in and join the family
DW |
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Welcome to painaid! It's a great place and I'm sure you'll find some fantastic friends.
It's good one of your fusions worked, at least. As much as it bites that the other didn't work, sometimes you have to look at the upside. We have alot of members with spine pain and failed fusions, so your in good company.
Pets are great companions. They don't judge you beyond "Why aren't you rubbing my tummy?" or "Give me treats!". And both are things we love to do for them anyways. I can't wait till I can get pets of my own- I need to graduate and move out of the parents house first. |
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Hello all. I am a 28yr old female. I have just been refered to a pain management dr, for a broken foot/ankle sprain that isn't healing well. According to my OS I am worse than "someone who broke their ankle in a car accident" pain wise. He did say that my x-rays look good. I fell down the stairs on Halloween and rolled my ankle resulting in an avulsion fracture of the talus and a severly sprained ankle. The only treatment I have been given is a boot and crutches, and enough x-rays to cover a room. I am still taking tylenol 3 with codine and the anti-nausea med at night. I am not able to take all the "good" pain meds they all make me really sick. I still have bad motion sickness with the tylenol 3, which is why I only take it at night. I have thought since my first OS visit that the boot wasn't going to fix the problems. But, I am the patient and I don't know how to treat the injury. I do not have insurance and am starting to think that is playing a huge factor in my treatment. My OS mentioned doing an MRI, until he found out about no insurance. Since this is my only option for getting seen, I feel like I have to go with his treatment plan. I want to get to the bottom of the pain, so I can get back to work. As of right now, I cannot go back to work until I have a full medical release, I must be able to wear a real shoe. My OS said that won't happen until we get the pain controlled and know what is the underlying cause.
buttrfli424 |
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Welcome to painaid!
I'm sorry to hear your ankles giving you so many problems. It does sound like theres something there the doc isn't seeing and that whatever it is could be causing the pain. Is there no way to get a second opinion? Do you qualify for any sort of medicaid, short term disability, or other medical help?
I am surprised they sent you to pain management so quickly. Many of us here waited years to get put into pain mangement. My ortho onco covered my pain for 1.5 years before passing me off.
Have you tried phenergan, and other anti-nausea meds? There are a slew of them out there. I can't take anything stronger than aleve without puking thanks to a wonky stomach, but with phenergan, I can take vicodin with no problems and can keep food down with even fentanyl and dialudid. |
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I don't qualify for medicaid, my daughter's child support is over the monthly max. I have tried getting a second opinion, but the clinics that I can possibly afford either don't have appts for several months or are not accepting new patients. I could try to go to another high dollar dr, but am running out of funds in general. Most require payment in full for non-insureds. I think the only reason my OS sent me is because he doesn't want to deal with me anymore. I am interested in seeing what the PM dr can do for me, since I also suffer from tendonitis in a majority of my joints. As for pain meds, I am highly considering going natural with herbs and such. Being on all these prescriptions is not good for the body. |
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Hi,
Depending on where the doctor is, there is usually some kind of financial package where you only pay what you can afford. Catholic Charities for the non-profit Catholic church who owns the hospital and out-lying clinics. A benefactor organization for those hospitals that are 'for profit'. Billing in all of these organizations would know who to go to for aid.
There were years we didn't have insurance and Catholic Charities were a God send.
Don't give up!
DW |
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I know I am not on right chat site, but I am moving from Fla to louisanna(Baton Rouge) and I need to find a pain doctor to take over for my current pain medicines and supervision. I am on SSi Disabilty(Full) for chronic neck pain. Can anyone help? |
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As I asked for help finding a doctor or clinic in Baton Rouge. Please e-mail me at macdette @ verizon.net if you can help me for my dilema of finding a new doctor by 2010, please can anyone help? |
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If you come back, you can try this link. A lot of information thre.
http://www.painfoundation.org/learn/resources/
Oh and welcome to PainAid. I found being here a relief from facing it on my own and maybe you will too.
DW |
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Hi everyone! My name is Traci and I have just found these boards. I am 41 years old and have had RSD for 5 years as a result of a very successful double spinal fusion.
I have had the SCS implant and am doing as well as possible considering my condition. Where I am struggling is health insurance. I have had group insurance for my whole life and my former employer with whom I have COBRA is not offering health insurance effective Jan. 1.
I have been shopping for an insurance policy here in Texas (a horrible place for health insurance BTW) and have gotten declined everywhere due to my RSD. I don't know what to do and am extremely depressed and anxious.
If anyone has any ideas, I would be very grateful. Thank you! |
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Welcome to painaid! We have an excellent group of people here, including a few with RSD and a few with SCS'. We have a chat every weekday from 11am-12pm EST, Monday nights 9pm-10pm EST, and Wednesday nights 7pm-8pm EST.
Do you qualify for any kind of medicaid? At the very least, if you can't find anything else right away, I'd look for catastrophy insurance- the kind that covers major accidents. Then you at least have something in case of an emergency. I really have no tips for you other than that, but I wish you the best of luck. |
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Hello,
My daughter is in the same boat. She found out that the DHS offers a medically needy medicade here. I would definitely call them and find out what you need to do. I hope they have it there..
oh and Welcome to our wonderful World.. Wish you didn't have pain to have to come here, but since you do, you will get a lot of support from everyone here.
DW |
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Hi Tracy and Welcome! The following link might be a good start for you to find insurance. I hope it helps and please know that we're glad you found us and hope to see lots of you around our site and in chats.
http://www.painfoundation.org/learn/locator/
PA_MaryAnne
APF/PainAid Team
A United Voice of Hope and Power over Pain
“The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation.” |
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Hi all, I am new here. I have spondylitis which is a lot like fibro and arthriis. It's great to see there is a support forum online for people like me. I joined because I have had a horrible time with doctors since my diagnosis a few years ago and definately understand. I had surgery about 3 years ago, and then found out I had the spondylitis. I take methadone for the pain. I am a bit concerned though because my doctor posted a note in the waiting room that stated people being treated for pain may have to find treatment elsewhere or sign a contract. My doctor hasn't said anything to me, and yes I take my meds as directed but because of the PTSD I have from other doctors I am scared. |
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First, welcome to painaid. met a lot of really sweet people here and they are so smart!
Okay from what I understand, if you stay with that doctor, and you are taking your meds exactly as you are supposed to, it shouldnt be a problem. )But then what do I know..
I think there are a lot of people who have had that experience. If you want, you can post the problems on one of the 'boards' and I bet people who know will answer you |
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Thank you, I will. I am just getting familiar with the site. Thank you for your reply. I have never asked for an early refill and go in within a few days of the same day each month. I only use one pharmacy etc. I may be asked to sign a pain contract if my doctor chooses to do that so that is what I am hoping for. |
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Hi forgvn and welcome to APF/PainAid. We're glad you found us and happy to have you on board. We hope to see lots of you around the boards and in chats! You'll find lots of support here and LOTS of reading/educational material.
We hear you, we care about you, and we believe you.
~Mary Anne
APF/PainAid Team
A United Voice of Hope and Power over Pain
“The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation.” |
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My wife (70 yrs) had a total reverse shoulder replacement approx 18 months ago. The pain should have eased by now but it has not. She is allergic to most opiates and a bunch of other stuff. Current and only pain control is Fentanyl patches and Fentora (same med) by mouth. The current dose does not work well and increased dosages cause side effects (throat constriction). What I'm looking for is guidance on who/where to go to test for another pain control agent that she is not allergic to or a physical method of blocking/? controlling the pain. We live in a central Louisiana community on a farm.
srusse11 |
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Hi, my name is Kathy. I have been diagnosed with RSD since 2006. I have had numerous nerve blocks and am on medication. It has travelled on the same side of me and I think that it has gone to my right hand as it began in my left. I closed my thumb in a car door to begin this horrible disease. I have kept close contact with my pain management team however I am getting upset as to how to deal/manage my condition. The heat attacks come and go and progress into my face at times.
I am a full-time college student making my way into the medical field. I have plans of graduating in May 2010. I however, wonder if this disease is taking over my life? I have health insurance until I graduate and then I don't know where I will be. I am only 27 years old. Do you have any suggestions even on medication that might help me? I am on Lyrica which is expensive and was on Gabapentine in the early stages of this and it didn't help but I am wondeirng if it might help now that we have gotten the bulke of the pain under management. Can you help me? Any information could help. Thank you for your time and suggestions. |
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Hello out there. I am a 56 yr old woman having been diagnosed with a lot of diseases/syndromes, and am so lucky to have found a Pain Clinic and doctors that focus on both short-term and long-term pain. They really believe in treating the pain aggressively, but are strict in their philosophy about taking them. I did not know what it was to get relief finally, and most docs won't help you.
I have three girls and two granddaughters. My daughters really understand and have been so helpful, but my husband really did not have much sympathy (we are about to be divorced). He was selfish and used to me doing everything, (kids, housework, cleaning, cooking, and holding down a job).
I have had migraines since age 10 and wasn't diagnosed until about age 29. I kept going to an ENT for allergies, which I did have, and he thought the headaches were from sinuses. I went to another ENT because my daughter was seen by him and he said they were migraines according to symptoms: aura, zig-zag and scintillating scotomata in my eyes - it was neurological classic migraines with nausea and throwing up. I couldn't raise my head or stand light or sound. I just wanted to die sometimes from the pain. My husband did take me to the ER when they got this bad. He did have a little sympathy.
My current dx's are: Pulmonary sarcoidosis which left large lumps in my lymph nodes, and the sides and back of my legs, migraines, 4 herniated discs which cause me severe pain, osteopenia in hip, osteoarthritis in my knees, neck, elbows, feet, hands. Chronic myofascial pain, and fibromyalgia - and chronic pain syndrome. I was recently put on Lasix for fluid retention.
I did not have any relief until I found this clinic. Most pain clinics will give you something, then try to "wean you off". Well, the pain is still there isn't it? Doctors were leary of prescribing.
Anyway, I apologize for length. I look forward to hearing your stories and talk to ya'll.
vala |
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<i>~ waves ~</i>
<b>Greetings to Everyone ...</b>
I've just discovered this site and I'm so glad to have found a group of folks that will understand me ...
<i>I suffer with:</i>
Fibromyalgia
Neuropathy
Sjogren's Syndrome
Degenerative Disc Disease
~ Spinal Fusion @ C4/5, C6/7
Celiac Disease
Optical Migraines with Aura's
~ followed by Migraines
Misc. Auto-Immune Issues
I've reached a point in my life, now, where I'm feeling like I've exhausted all options for improving my chronic pain ... I hope I'm wrong, and I'm going to try to make this new year, 2010, be a more positive one ...
I've noticed that there are Chat Sessions here, as well as the Discussion Boards ... and I'm very much looking forward to joining in on both avenues of communication ...
<i>Respectfully ...</i>
Softie ♥ |
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Hi everyone.
Welcome. It sucks living in pain, but it is truly great to find a place where people understand. This is the place.
I tried other places, but when I found this one, I decided to stay. I can tell ya that there are chats that can be caring and fun and serious too. Chats are during the day at 11 am eastern and a couple at night too.
DW |
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Hi DW ...
Thanks for the kind welcome 
From what I've scanned over on the message boards so far, it seems like a fantastic place here!
I'm looking forward to getting into some of the chats y'all have, but apparently I've got to figure out how to format my computer to "Java Script" ... that will be my creative challenge for the day!
Thanks, again, and I look forward to "meeting" you soon ...
Softie ♥ |
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My name is Glenn and I have degenerative disc disease. I have Titanium rods and 6 screws in my neck and currently have a herniated disc which is located just below my skull cap. I have been treated for pain for about 4 years now. A question that my Doctors avoid answering but to me is need to know is about the long term affects of narcotic pain medicine on the brain, liver, heart, kidneys, etc.. I would like to know what to expect. Is there a threshold dose or an amount of medicine that remains w/o negative affect or is there a maximum amount of lets say hydrocodone or oxycodone per day that remains safe for long term treatment? I dont want to find out one day that I have damaged my liver or kidnesy or destroyed my brain without knowing it. Any help or info would be appreciated. Thank you........Glenn
gl726 |
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I suffer from daily Migraines due to an accident that has caused a closed head injury. Its been three years and time just stands still |
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Welcome, Glenn
We have a great Ask the Experts section with a discussion board with PA_Rob who is a pharmacist. He may be able to answer some of your questions.
Our website is chock full of information on treatment options and will answer a lot of your questions/concerns regarding various types of medications.
A good place to start is the Treatment Options publication and our Pain Information library.
Here are some links to get you going:
Treatment Options - http://www.painfoundation.org/learn/publications/files/TreatmentOptions2006.pdf
Pain Information Library: http://www.painfoundation.org/learn/
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Dear Tamelamoquin,
I suffered a similar injury and can say migraines are certainly tough to live with.
We just got word about a migraine online event from the Cleveland Clinic and posted it on our Chronic Pain board.
Our website has a lot of info on migraine and a lot of folks here are dealing with the same things.
Here's a couple of links to migraine info on the website:
http://www.painfoundation.org/learn/library/qa/headache-versus-migraine.html
http://www.painfoundation.org/learn/links/headaches-migraines.html
http://www.painfoundation.org/learn/library/qa/headaches-caffeine.html |
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My husband has suffered from severe nerve pain for 7 years and tried every type of pain medicine with no relief. He began taking 2 all natural supplements that have given him pain relief.  He is a totally different person without all the pain. They are OPC+ and Aloe Red twice a day/ 2 scoops of each with 6oz water. Try it, all natural but has worked where all others have failed to give him any relief. I don't know the technical stuff that make this work but I have my husband back.  Victoria
Updated by PA_MaryAnne on 07/01/2010 13:44 |
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Hi my name is Lyn. I was diagnosed with RSD in Feb 2006. Lately my pain is really bad. |
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I am new. Have too many diagnosis to count. Not going to go into them as they are there and nothing is going to change unless miracles start being handed out.
I am trying to be upbeat, but i don't think I can anymore. Just plodding through life
JA |
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Hi
Anyone have any knowledge about treatment methods focused on glia as a cause of pain? (Check out Dr. Linda Watkins research on this topic). |
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Welcome to PainAid! We hope you will explore and meet new people who truly understand what it means to live and thrive despite their pain.
We also have daily chats in our chat room Monday-Friday at 11:00am ET, Mondays at 9:00pm ET, and Wednesdays at 7:00pm ET. We would love to have you join us.
If the PainAid team can help you find any particular information, please let us know.
PA_Carolina
APF/PainAid Team
American Pain Foundation
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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Hello, my name Ill be using here is Poppy. I have had chronic back pain for the past 14 years. Ive had 2 back surgeries with no sucess. Iam currently taking 90mg of morphine and 60mg of Hydrocodone a day. I see a pain management Dr. once a month. I have no insurance and the cost of the Dr. and prescriptions are about to bankrupt me. Is there any help out there for a person that doesnt make alot of money?? |
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Hi Poppy,.
Welcome to painaid. I don't know a whole lot of what you were asking for, but I think there are some places on line.. Needymeds is one(I think that is right) Sometimes doctors will help patients (pro bono) if you explain what is going on.
Good luck and hope to see ya around.
DW |
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Hi, I just joined 1/23/10
I am from Baltimore, and am looking for resourses and practitioners within a reasonable distance.
Like most of you, my problem is complicated---Here is a synopsis:
Three years ago while waiting for custom orthodics (had a tendon transfer in left ankle) I decided to take an on-line computer course to keep me off my feet.
I bought a new chair and worked off and on most of the day for the course. AFTER THREE WEEKS MY HEELS BEGAN TO BURN AND THE SOLES OF MY FEET BEGAN TO GET NUMB. THEN I BEGAN TO FEEL INTENSE PAIN IN MY BUTT. I WAS NO LONGER ABLE TO SIT WITHOUT INTENSE PAIN.
The pain is still there in two places: Around the left sitting bone (Ischium, I think), and also, with different chairs, on prominances of the hip bones, felt directly to the sides of the coccyx.
I have been diagnosed with "Weaver's bottom" (bursitis) and most recently with Levitor Ani Spasm Syndrome and have been trying to find a practitioner who understands how to treat Pelvic Floor Syndromes.
I have recently had MRIs of the lumbar spine which shows L4-L5 disc degeneration, but not enough to warrant surgery as well as some arthritis in the Sacroiliac Joint.
I have been reading an interesting book called, "A Headache in the Pelvis: A new understanding and treatment for chronic pelvic pain syndromes". The authors are David Wise PH.D (a psychologist) and Rodney Anderson, M.D. (A Urologist) who have a clinic north of San Francisco.
There approach (called the Stanford Protocol) is a combination of Progressive Relaxation techniques, plus the releasing of INTERNAL TRIGGER POINTS (throught the anus or vagina) to break the painful cycle of muscles and ligaments nerves, due to anxiety/stress, and tension.
Does anyone know of a hospital between Baltimore and Washington that is working in this area. Or at least a pain clinic that works with Progressive Relaxation Techniques?
Any thoughts or insights are appreciated.
Searching123 |
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Hello Searching and Welcome to PainAid. The following is a link to a APF site for help in getting care. There will be links to a lot of specialties and if you can find the closest to your particular situation.
http://www.painfoundation.org/learn/resources/finding-care/
I Hope this has provided some hope and help for you. Please be sure to read and join in the discussions on the rest of the boards as well as the chats Monday- Friday at 11:00 Eastern as well as a Wednesday evening chat at 7:00 eastern and Monday at 9:00pm Eastern
PA_Fun
APF/PainAid Team
Http://www.painfoundation.org
"A United Voice Of Hope And Power Over Pain"
The views herein may not represent the views of the American Pain Foundation. |
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Hi I'm new to this site. I have what is being called PAGCL, or complete loss of cartilage in the shoulder. I would like to know what others are doing for this condition. My option now is a shoulder resurfacing, but the doctor is hesitant because he says I'm too young. I take Vicoden, but it doesn't always help (less and less as time goes on). |
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Hi Ripley14,
I want to be the first to welcome you to painaid. It is a neat place and people here are really helpful and caring. Make sure you check out their chats and read and add to the other discussion boards.
DW |
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Hello i'm Rhiannon, 38 yo male with aids and prn. I am having difficulty trying to find a doctor to help manage my pain. My HIV specialist is doing it right now, yet she is afraid to do more than what she is providing. However a great doctor. she has under prescripbed my medications and for months i thought i was actually addicted and taking more than i was supposed. but i recently found out from my pharmacist 3 of them told me she only writes my prescription for 25 days, so now i know i wasnt abusing my meds. i brought this to my doctors attention but she disagrees with me and the pharmacist.. i have tired to find a pain specialist and been to several yet they say they cannot do anything for me even though i do have chronic pain. i want some kind of life back and i really need a doctor to help, i am open to other solution besides pills, but i will say all this " how to say" calming down , yoga n all that dont set right with me.. i cant deal with all of that. it just aggrivates the situation. i hope someone in Louisville KY or someone who knows a doctor or clinic that may treat me will send me a message... at hrmrhiannon@insightbb.com
thanks so much.. Rhiannon
hrmrhiannon |
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hi hrmrhiannon,
I wanted to say hi and welcome to painaid. This is a neat place here. Only one I found that really has people who care. Check out the rest of the boards and find some help.
I do know people can't post anything with doctor's names or anything like that and it is good you left your email.
There is a place here that can help you find a doctor. http://www.painfoundation.org/learn/resources/finding-care/ I was pretty impressed with the information.
See you around
DW |
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Hey everyone...I am new to this site and am hopeful i can find some answers here. I have had chronic pain for 15 years due to an equestrian injury and several other injuries that soon followed...I had been on percocet for many years until my primary provider relocated to a new area...it has been difficult finding a physician that will treat my condition much less sympathize...they are all heartless...my current physician although receiving a recommendation from my pain specialist..still will not prescribe narcotics...I am in pain daily that has seriously adverse affects in my daily living..i went from being an active outgoing person to an isolated, depressed and extremely immobile..narcotics seem to be the only releif i get..it makes me extremely angry that physicians lable chronic pain patients as drug seekers or addicts...my pain controls my life..my activities and my personality...any advice would be appreciated. |
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I know exactly how you feel. Even with the obvious evidence of MRI's and CT scans, everything. You are treated like you just want some pills. It's terrible going through life like this. I have just had it. But, what can you do. We are at the mercy of docs who think that if you take a pill every four hours you are a criminal. |
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Hi. I'm new here. Just suffering. At the end of my rope. I know there has to be others out there fighting through everyday like me. I am 41. I have serious chronic pain. Herniated disks, degenerated disks, arthritis in low back and hips, feels like the rest of my body too. Bone spurs on the hips. I am getting steroid injections all the time. Missing work. Nobody understands. Have to take pain medication daily to make it, only gets me by. I don't have a pain free hour. I have three kids and a job and I just can't do it all anymore. Taking care of the kids is the most I can manage. I am told to get disability I have to not be working for a year. How do I make it a year without working to maybe get help. What do you do? I am so frustrated with it all. Getting meds filled every month at the pharmacy, they look at you like a criminal. Walk ten feet in my shoes. Sorry, I'm having bad day. It's my birthday, had to miss work. Got another injection, in pain and boss gripes because of my "backache". |
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Hi. I'm new. Need advice about how to amend my medical records & deal with a new internist who has labeled me with anxiety & psych issues. My old internist got sick & is no longer in practice so I had to find someone new & it is not a good fit. She didn't have critical records to refer to so she didn't get the full ppicture. I don't want to see her again but her notes will stand in my medical records. I plan to make copies of the records she didn't have, and ask her to add an addendum to the record. I also want to somehow communicate to her that when a patient presents in tears with pain, it doesn't mean she should be labeled as anxious or having psych issues. Any ideas? Thanks. |
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Welcome Deborah and Bridge.
Here you will find a 'fit'. Hopefully you will make friends here, like so many others.
Please feel free to go through all of our 'boards' and do check out the chats. Real time support at the touch of your fingers.
Pain Aid Chat Schedule
Chat Room ONE
Monday 11:00 am - 12:00 pm (EST)
Host: PA Namma
Monday Evening Chat 9:00 - 10:00 pm EST
Hosts: PA Carolina
Tuesday 11:00 am - 12:00 pm (EST)
Hosts: PA Gootes & PA Susie
Wacky Wednesday Chat 11:00 am - 12:00 pm (EST)
Host: PA Namma
Wednesday Evening Chat 7:00 - 8:00 pm (EST)
Hosts: PA Gootes & PA Fun
Thursday 11:00 am - 12:00 pm (EST)
Hosts: PA Gootes & PA Racer
Friday 11:00 am - 12:00 pm (EST)
Host: PA Carolina
Saturday and Sunday
No Hosts: Open Chats
Chat Times For All US Time Zones
Monday-Friday Morning Chats
11am (EST)
10am (CST)
9am (MST)
8am (PST)
7am (AKST)
Monday Evening Chat
9pm (EST)
8pm (CST)
7pm (MST)
6pm (PST)
5pm (AKST)
Wednesday Evening Chat
7pm (EST)
6pm (CST)
5pm (MST)
4pm (PST)
3pm (AKST)
See you there !
PA_Fun
APF/PainAid Team
http://painfoundation.org
A United Voice of Hope and Power Over Pain
the views expressed herein my not necessarily represent the views of the American Pain Foundation |
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Have you ever thought of putting the newest posts at the top?? Several boards I use do that and it seems easier to use.
Enough of that. I am Jenny, I have had chronic pain since my early 30s and I am 59 now. First in my back. The deg. and bulging discs, arthritis, all that business. I now have a spinal cord stimulator which helps with that, but of course doesn't take away 100% of the pain, and I didn't expect it to.
I now have peripheral neuropathy which is from diabetes. It effects my feet, legs, arms and hands. I take Lyrica and Codeine for that. Of course it helps some, so that most of the time I can tolerate it. But it has effected my balance, which is making walking difficult.
Jenny |
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Welcome, Jenny!
Thank you for the suggestion. We are looking to upgrade our system and we'll certainly look into that.
We're glad to have you here at PainAid and I'm sure we'll learn from each other as you explore the boards.
If you have any questions, please just let us know.
PA_Carolina
APF/PainAid Team
American Pain Foundation
PA_TeamAdvisor @ painaidonline .org
http://www.painfoundation.org
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of the American Pain Foundation." |
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Hi. I'm new and wondering if anyone has been treated for Peripheral Neuropathy, fibro and other pain disorders together. My list of med failures grows and grows, and any information you can share would be helpful. Thanks.
pn et al |
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Hi, My name is Bonnie. I've had chronic pain for over 10 years and take, vicoden for my pain. I am looking to see if there are any new and safer drugs available now. I get monitored frequently to check for any liver damage but I still am concerned at the length of time that I have been taking this drug as well as the amount. I am unable to take nsaids due to heart problems and I am somewhat limited in my choices. I've been diagnosed with Lupus and Fibromyalgia and although the vicoden works well to control my pain I am still concerned about the long term use and effects it could have. |
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Hey, welcome PN and Bonnie..
You need to check out the rest of the discussion boards. There are plenty of topics that probably pertain to each of you. There are boards where you can share your experiences with others and visa versa. (I have always loved that phrase)
Come on down and jump right in
DW |
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Hi all -- and welcome!!!!! DWBH is right- We're glad to have you, please just right in.
We're archiving this topic and starting a new Introduce Yourself. Feel free to make follow-up posts there and please let us know if you have any questions.
PA_Carolina
APF/PainAid Team
American Pain Foundation
http://www.painfoundation.org
Combined Federal Campaign Designation: 22290
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of the American Pain Foundation." |
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I HOPE I'M DOING THIS RIGHT, FIRST TIME OUT, HERE TO DISCUSS MY CHRONIC PANCREATIC PAIN.
CAPFNP19 |
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ANYONE WITH CHRONIC PANCREATITIS???
CAPFNP19 |
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Hi my name is Keith. I had 3 vertebras fused together a few years ago. And from it I got a severe staff infection around the 6 screws they put in my spine. It was going on for over 6 months. The area od the pauss was about 12"x12" and about at least an 1" thick, with a SQAURe lump on top of that 3"x5" and an 1" thick. 10 doctor told me that they had never seen anything like it ever before and that it shoulld have killed me. But the reason I'm writting is that I got nevre damage on the left side if my back from the fusion and nerve damage on the right side of my back from the third one where they took all the metal and infection out. I've been seeing a pain doctor for 3 years and I was trying to tell her about the mental side of the pain. Just like when a POW is tortured and they break them mentally. She said that a lot of her patients "use the pain medication" for depression. I wasn't saying that, thinking that, or anything a long those lines But when we were at he end of the session she said that she was going to give me several more months of medication and then have me go through a detox clinic. Now how is that going to deal with the pain. Make it the same, better, or worse? Looking back i wish I didn't say anything. I was trying to be honest. But I'd like to ask the people reading this that are in chronic pain how much of the pain is physical and how much is mental? The first time I blew a disk out for the first month it was just physical, then after that the mental anguish was just as bad as the physical pain. I got to the point, when I was waiting for the neurosurgent to operate, they weren't giving me enough pain medication, that I was going to make the pain go away one way or another. The mental anguish was unbearable. Please let me know how the oain effects you mentally, or is it just me. Like I was saying I think that is what pushes a person over the edge to committ sucide. I knew several people that took there lives. The pain didn't get any worst, it was the mental agony. And now that my doctor says she is stopping my pain meds I'm afraid it will do the same to me. I almost didn't make it through last winter, being stuck in a little house in pain WITH the pain medication. I know I can't go through it without the medication. It's been to long to endure it this long. thanks for taking the time to read this. Keith you can e-mail me at keithincapitola@gmail.com. Please only e-mails about this point about the mental part of the pain. Thanks |
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