Hi! Glad to be here ... I am a woman suffering from severe and chronic pain due to congenital scoliosis of my spine which was compounded by domestic violence. I'm free of my batterer, have been for over 20 years, but his legacy lives on ... big time DRAG!
painfullyyours
Updated by pa_Carolina1 on 10/06/2008 18:47 |
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Anyone know whether messages can be edited to correct typos after posting? And how to do this?
painfullyyours |
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Dear painfullyyours,
Welcome to PainAid!
Regarding the editing of posts, unfortunately only moderators have that capability on our current system. I went ahead and deleted the duplicate post and edited the typos -- but, please don't worry about spelling here. We all make plenty of mistakes -- this is a spell-free zone. 
Thank you so much for sharing your story. I'm glad that you are free from your batterer and hope that you are moving on to a brand new chapter.
As far as pain goes, we all have it here regardless of the reason and will gladly share what we know and help you find the many resources that we have.
Welcome!!
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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I'm 55 with ddd of 4 discs in my thoracic spine with osteoporosis. I am trying to adjust to the chronic nature of the pain. I met a pain management physician, board certified trained at MAO clinic, who doesn't believe in treating patients with chronic pain with narcotics. What am I to think about this? I can't imagine going through life without numbing the pain. Is this a normal doctor who treats chronic pain? I am beginning to doubt myself and wonder if my pain is all in my head even though I qualify for disability and my other doctor says that my 100 mg of morphine needs to increase. |
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docs don't seem to like treating pain. I was just reading an article to that effect. They will treat cancer pain but not non-cancer pain
blessings;
Dee |
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hello there i am not to good at typing but i am in the process of recovering from 4 level lumber surgery in my 5 month and have some relief from my old pain but now have new pain was wondering if any one could tell me what the time length before trying to return to work thanks mike-n |
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hello mrcollier sorry nto here about pain 55 myself just hade 4level L2-S1 SURGERY it has helped but still having pain mike-n |
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Hi.Im New Here and Having A Difficult Time(Pain Wise) I Have Fibro,MS,Numorous Operations(Scar tissue,Nerve Damange In My Neck & Last But Not Least Degenerative Disc Disease. I`ve read some of the Disscussions And Im Looking Forward To Making Friends Here. We Can Help Each Other Through The Rough Times And Hopefully Make them More Bearable. Hope Everyone Finds Relief SOON. Talk to ya soon,I Hope. PurplePain(Cindi) |
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HiYa Purple Pain ! Just read your intro.and i feel for you,I'm a newbie myself and want to welcome you as a friend !
HardRock Miner |
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Hi HardRock Miner, How Are you feeling Tonight? Thanks For The Welcome! Your the Only Person Who`s Answered Me So far. How Does This Site Work? Hope Everyone Is Having LESS pain Tonight & NOW! Thanks. PurplePain. |
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Glad to hear back from you Purple Pain.I wish I could be of more help to you but being a newbie,about the only thing I can think of is for us to get some advice from one of the PA's I'm sure they will be of help.In the mean time I'll tell you a little about myself,I'm a retired Miner & Mine Rescue Team Captain(that was untill a non-operative lower back injury took me out) thankfully I finally found a good PCP that keeps my pain level bearable most of the time.I have found a new love,respect,and compassion for everybody in pain ! Hope this finds you having as pain-free of a day & evening as possible! Hang in there & Chins Up ! Your Friend-
HardRock Miner
HardRock Miner |
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Hi Painfullyyours,
Welcome to the group.
I know how it feels to battered my a love one. I had a love one batter me as well. So I do understand and I'm you are away from that person.
God bless
izzie |
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Hi, I am new to the Asheville area. My husband and I moved here late Nov. from Raleigh. I was treated for my chronic pain problems by the same doctor in Raleigh for the past 8 years or so. I am using narcotics for relief and they seem to work pretty well. They give me enough relief so that I can function most of the time and live a normal life. The problem I have is that since our move to this area I have not found one doctor who is willing to prescribe narcotics! I have called numerous primary care doctors and internal medicine doctors and I am always told upfront, that the doctors do not even see patients who are taking narcotics. I have seen 2 pain mtg. doctors, both of them also told me they do not prescribe narcotics! One of these doctors tried to help me by giving me some kind of injections into my spine. I rec'd about 3 series of these injections, but got no relief. I had to stop after the 3rd appt. because I became very nausea. Is there anyone who can help me in this area?? Right now I am driving to Raleigh every month to get a prescription from the doctor there. This is a real hardship on me, esp. since I am in this pain. I was in a devastating auto accident in 1991, in which I fractured about 24 bones on the rt. side of my body. I believe this is the cause of my pain. Can anyone help me to find a doctor who can help me? I am having a very difficult time right now coping with this and need some help. Thanks...Shenri |
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Hi, I'm brand new here and still trying to figure out how to use the site. I'm a 20 something year old female. I have been sufferering from chronic pain almost as long as I can remember, at least since jr. high. A low level of constant pain has become the norm for me along with stiffness, and I can't even remember how it feels to be 100% pain free. I have a painful knee disorder and shoulder pains that were compounded because of a car accident. I also have other constant pains that are too many to mention here that I'm still under going tests to diagnose. |
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Dear Chewy,
Welcome to PainAid! I'm glad you found us. I see that you posted a question here on the Welcome Board and then realized it work probably work better on Diagnosis & Treatment. I'd say you're catching on to how our site works pretty well.
We'll be happy to assist you if you have any questions or need help navigating - so please just 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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HI EVERYONE. I'M A DWF IN MY 40'S AND I HAVE PAIN FROM RSD/CRPS, SINCE 1999. I AM SO GRATEFUL FOR SITES SUCH AS THIS, BECAUSE I NEVER WOULD HAVE MADE IT WITHOUT SUPPORT FROM OTHER PEOPLE WHO HAVE LEARNED TO LIVE A WORTHWHILE, SOMETIMES EVEN HAPPY, LIFE EVEN WITH THE PAIN! I WANTED TO SIGN UP FOR THE ONLINE CHAT RE EPRESSION. nOT SURE HOW TO DO THAT????
Itsmyparty |
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Hello, Itsmyparty! Welcome to PainAid!
We certainly strive to find ways to live happy, productive lives in spite of the pain we endure and are glad that you found us.
Regarding the chat on depression, we filled up on registrations (within an hour and a half of our announcement) and are taking a waiting list.
Those on the waiting list will still have a good shot at getting in. Just send me an e-mail at Chats@painfoundation.org and I can put you on the list and send you the information.
For those that can't make it, we'll also have a transcript available about an hour after the close of the chat.
Thanks!!
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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First time here, glad to find any help with pain & depression.
They surely do go hand & hand. Hope to join in future chats. |
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Welcome SMcKee,
I'm so glad that you found us here. Regarding future chats, we have daily open "Morning Coffee Chats" Monday-Friday at 11:00am EST, Mondays at 9:00pm EST and Wednesdays at 7:00pm EST.
These chats are open to all and offer an opportunity to talk to fellow pain patients. These chats are very helpful to give us an opportunity to see how other patients are making it through.
Of course, check out our discussion boards as well. You can "talk" to fellow patients, caregivers and medical professionals.
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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Well, I don't know how I missed this the first time, but I'm officially reintroducing myself. I'm Patti, alias browneyedgirl. I think I've been in on every topic by now. I'm another chronic pain sufferer and here to lend support and hopefully get some support. I found this particular chat page when I signed up for the Chronic Pain and Depression Discussion on June 17th. Most of my problems are from spinal problems and multiple surgeries, although I have migraines, arthritis, fribro and an autoimmune connective tissue disease. Now, my biggest pain issue is from arachnoiditis from my second lumbar fusion. I have a Spinal Cord Stimulator and am awaiting trial for a pain pump in late July. I'm glad to be here to talk to people who have experienced some of the same things. Gaining new information is always a plus.
browneyedgirl |
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I'm not a deleted user. Don't know what happened there! 
Well, I don't know how I missed this the first time, but I'm officially reintroducing myself. I'm Patti, alias browneyedgirl. I think I've been in on every topic by now. I'm another chronic pain sufferer and here to lend support and hopefully get some support. I found this particular chat page when I signed up for the Chronic Pain and Depression Discussion on June 17th. Most of my problems are from spinal problems and multiple surgeries, although I have migraines, arthritis, fribro and an autoimmune connective tissue disease. Now, my biggest pain issue is from arachnoiditis from my second lumbar fusion. I have a Spinal Cord Stimulator and am awaiting trial for a pain pump in late July. I'm glad to be here to talk to people who have experienced some of the same things. Gaining new information is always a plus.
browneyedgirl |
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Browneyedgirl,
Hello, Welcome to Pain Aid. We are happy to meet you, we wish it was under different circumstances, but we are here to lend support in whatever way we can.
The Deleted User shows up when you are on the boards for a certain amount of time, when you sign in, if you check the box that says, "Remember me until I manually log out", the deleted user will not show up.
I would like to invite you to our hosted chats, Mon-Fri 11am (est), Monday evening 9pm (est) and Wednesday evening 7pm (est). Please stop by and chat with us, we laugh, we cry, we spend an hour or so, just getting to know each other and enjoying each others company.
Pa Namma
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The Views or Opinion contained herein do not necessarily represent those of Pain Aid or the American Pain Foundation." |
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Browneyedgirl,
Hello, Welcome to Pain Aid. We are happy to meet you, although we do wish it was under different circumstances.
We are here to lend support and to help out in whatever way we can.
The Deleted User shows up when you have been logged on to the boards for a certain amount of time, when you log in, if you check the box that says, "Remember me until I manually log out', the deleted user will not show up.
I would like to invite you to our hosted chats, in Conference Room One, Mon-Fri 11am (est), Monday evening 9pm (est) and Wednesday evening 7pm (est). We laugh, we cry, we support each other, we spend an hour or so, just getting to know each other and enjoying each others company.
Pa Namma
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The Views or Opinion contained herein do not necessarily represent those of Pain Aid or the American Pain Foundation." |
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What exactly will a pain pump do? I would never have wanted the pain tens-type unit in my back (that buzzing feeling is not pleasant) -- but I am open to other things. Do you know if you can go in the water with it? How intrusive is it?
I had back survery in 2002 -- epidural fiborsis as a complication -- not so easy to treat aside with meds (and docs don't generally give meds-- though 5 years ago they gave out Vioxx like it was candy -- no way with demoral or pecodan though |
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Obviously you are not a deleted user. But it sounds as though you and I have much in common though. I too have had 5 lower back surgeries to include 3 fusions. The pain in my lower back, my groin, both hips and left leg is sometimes so bad that it brings this man to tears. Like most men crying is not something that I have ever been used to but I am getting there. Strangely I find the pain hard to describe to doctors. The best I can come up with is that is a terrible ache that comes in waves. Sometimes the tramadol I take takes enough of the edge off to bear it and many times it is not. The flareups are something else and nothing I would wish on my worst enemy. I have had much trouble getting diagnosed. My last PM guy would never tell me the diagnosis but he was quick to offer the spinal cord stimulator trial. Unfortunately, it did not work and he refused to talk to me about a pain pump or anything better than the tramadol. So here I am, stuck. I am looking for a new PM doctor that thinks along the lines of APF or NFTP, but that is not easy. Been looking for 2 years already. If you happen to know anyone near the Houston Texas area please, please let me know. Thanks and by the way I hope you get your pain pump trial. Let me know how it works for you. |
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Obviously you are not a deleted user. But it sounds as though you and I have much in common though. I too have had 5 lower back surgeries to include 3 fusions. The pain in my lower back, my groin, both hips and left leg is sometimes so bad that it brings this man to tears. Like most men crying is not something that I have ever been used to but I am getting there. Strangely I find the pain hard to describe to doctors. The best I can come up with is that is a terrible ache that comes in waves. Sometimes the tramadol I take takes enough of the edge off to bear it and many times it is not. The flareups are something else and nothing I would wish on my worst enemy. I have had much trouble getting diagnosed. My last PM guy would never tell me the diagnosis but he was quick to offer the spinal cord stimulator trial. Unfortunately, it did not work and he refused to talk to me about a pain pump or anything better than the tramadol. So here I am, stuck. I am looking for a new PM doctor that thinks along the lines of APF or NFTP, but that is not easy. Been looking for 2 years already. If you happen to know anyone near the Houston Texas area please, please let me know. Thanks and by the way I hope you get your pain pump trial. Let me know how it works for you. |
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Hi. I am here because of fibromyalgia pain. I am a grandma of 10 grandchildren and enjoy them all. I live in Alabama and need help with pain. |
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Bluebunting,
Hello and Welcome to Pain Aid, it is very nice to meet you, however I do wish it was under better circumstances.
10 grandchildren is awesome, I have four and they are truly what makes my life complete.
I lived in Alabama for many years, and I have been away from there for several years and I still miss it very much.
I would like to invite you to our hosted chats in Conference Room One, Mon-Fri 11am (est), Monday evening 9pm (est) and Wednesday evening 7pm (est).
Pa Namma
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The Views or Opinion contained herein do not necessarily represent those of Pain Aid or the American Pain Foundation." |
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Hi, I also live in Alabama and would like to hear from you. I live in Gardendale right outside of Birmingham. |
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Hi I am a granny myself (othewise known as MawMaw) here in Alabama. Would like to talk to you sometime. My email address is jfarmer@bakerdonelson.com. Hope to hear from you! |
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hello i have degenerative disk dease,on top of that was assalted at work and dislocated my shoulder recently had cervical spine fusion,every disk in my spine is bulging herniated or rupsured.some times i think that doctors these days are just in it for the money.
tompullin
Updated by pa_Carolina1 on 18/06/2008 11:39 |
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also have reversed lordotic curve and scoliosis.spinal stenosis spondylosis, forgot to mention that |
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Hi, Tom
It was nice to meet you last night at chat. Welcome to PainAid!
We have all had different experiences with doctors. There are many wonderful doctors out there who are very caring and want to help. There are some who are not.
It's important to remember that we do (for the most part) have a choice in doctors and we should be partners together in our care.
If you don't feel that your doctor is providing adequate care. Get a new doctor or sit down and talk to the one you have about your concerns.
We have some great tools that you can use.
For communication, the Target Chronic Pain Notebook (http://www.painfoundation.org/page.asp?file=Publications/Index.htm) is a great tool. There are also other publications on that page with Treatment Options and Resources that you can discuss with your doctor.
If you're wanting to find a new doctor, we have a link that might be helpful: http://www.painfoundation.org/ResourceLocator.asp.
Again, Welcome!
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 everyone...first time here but looking for support,info,etc everything! Been suffering and on STD (off from work) for last few months/I have pinched nerve--herniatd disk in C5-7 rgion plus multiple bone spurs. One of the ortho docs I went to first thot it was a rotator cuff injury...go figure and did NO xrays! I had to go to a neurologist for that... I seems the trtmnts all either conservativ,then invasive. Been on meds and PT..they help some. I have had last few weeks cerv epid sterd shots but I dont see much pain relief. would be good to get off all the meds... course employer wants me to come back like yesterday! its such a hassle and stressful plus the ongoing pain !
Thanks for listening... :-l |
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Dear caej77,
Welcome to PainAid! We're glad you found us.
As far as information and support -- we've got that in spades here.
We hope you'll explore the boards and join in on the conversations. As well as our daily chats.
You may want to read our publication, Treatment Options (http://www.painfoundation.org/page.asp?file=Publications/Index.htm). It's a great resource that may give you some ideas of things you haven't tried yet.
Again, welcome!!
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 am new here. I tried to intro myself here and in a couple of other topic areas but I guess I don't understand the process as I haven't seen my letter here nor in the other places.
I have RSD and Fibro. Have had RSD from a work injury for over 11 years. It started in my right hand and has moved to include the right side of my body-some inside some outside. Yes I have had treatment - years ago but for the last 6-7 years have mostly been on meds with no change due to trouble finding a good treating doctor. Being in California under W.C. is a bear.!
The Fibro I believe I might have had previously but it wasn't diagnosed until after the RSD started. The Fibro is really painful and makes it hard to walk, stand or even sit. It could be the RSD too....who knows? In addition, due to the meds and treatments and not being able to move around, I have gained a lot of weight. Is there anyone else out there that has had that problem too? Arthritis is now added on and stenosis in my neck causes pain too.
My HMO wants me to have bariatric surgery not understanding that with RSD, it is not good to have surgery! My blood pressure is good and I don't have diabetes. In addition I watch what and how much I eat so I am not a typical bariatric patient who is overeating all the wrong foods.
I look forward to hearing from other people and supporting you too. |
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Dear kat3mom,
Welcome! It's so good to have you here. Your post showed up, so I'm guessing you figured out the process, but if you have any questions, please just let us know.
You can make a post here to ask a question of the moderators, or you can e-mail any of us by clicking on the name of the PA (moderator) that you would like to reach from our staff page (http://painaid.painfoundation.org/Default.aspx?pageId=3)
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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shoot I typed a whole thing n made it disappear. How long does it take to shoe if posted?!? Hi, I am new. 43 MWF DDD, cervical fusion, failed spinal stimulator, successful YESS endoscopic discectomy at L4-5-S1 but L3-4 starting cycle all over. Also spinal and facet stenosis. I was going to say that reading tompullin is almost like a diary. |
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Dear 1stfrenzy,
Welcome to PainAid! We're glad you are here.
To answer your question on how long it takes to post, when you click the Post Topic button, your screen will refresh and your post should appear immediately.
If you have any technical questions, please feel free to 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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when I had a fusion at C5-6-7 I was on medicaid. Went to good doc but got what I call "welfare treatment"; they do as little as poss cause not getting paid as much. Didn't even x-ray below c-spine. After fusion n a year or so later found good doc. x-ray of neck and MRI of rest showed degen discs and guess what? I now have a 30 degree corner in spinal column where they fused in area w scoliosis. |
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Hi All, I don't think I have posted on the message board in the past but I could have since I am constantly trying to find new ways to cope with chronic low back pain. I have had this pain for the past five yearrs. My diagnosis is scoliosis, spinal stenosis, degenerative disc disease and two bulging discs. I am becoming more disabled by the month but my neurosurgeon has told me that were Io have surgery, I would only have a 20% chance of recover; a 50% chance of staying the same and a 30% chance of being worse. In other words, he does not recommend surgery. I am unable to take pain medications and/or antidepressants because I have the side effect of urinary retention, which I guess is really rare. I take excedrin two times a day and gabapentin to help with the sciatic pain. It is very depressing and frustrating but I know that there are others much worse off than me. Anyway, I'm glad to have found this board and hope to find help here.
Jane
Jane28
Jane28 |
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Jane28,
Hello and Welcome to Pain Aid. I totally understand what you are going through. I also have DDD, Sciatica, RA, OA, Scoliosis, Spinal Stenosis and the list goes on.
I was also told the odds was not in my favor to have surgery. So I just take life day by day, over the last 20 yrs I have watched myself become more and more disabled as each year passes. I try to focus on what I can still do.
Have you or your doctor thought about the Spinal Cord Stimulator, maybe that is something that could help with your pain, since you cannot take pain meds, we have a discussion on the "Diagnosis & Treatment Board" all about the stimulator, if you are interested, here is the link...
http://discuss.painfoundation.org/replies.aspx?cbbsid=16&tid=4727
Take Care
Teresa |
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Dear Jane28,
It's good to see you again. I'm glad you were able to attend our chat the other day. We have some resources that may be of assistance to you.
APF's publication, Treatment Options, has a whole section on CAM - Complementary & Alternative Medicine. You can click here to go to our publications page for great information: http://www.painfoundation.org/page.asp?file=Publications/Index.htm
Also - we just had a special webinar on this subject last month. You can click this link (http://www.painfoundation.org/page.asp?file=Webinar/Replay.htm) to replay the webinar and possibly get some ideas of treatments that you can try.
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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Thank you Carolina. I will certainly check out the websites you mentioned. |
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Hello, I am 24 and diagnosed with Myofascial Pain Syndrome 4 years ago following a fall from a horse and have been struggling on & off ever since. I have been having a flare up since February following a dental appt (anyone else heard of that?) and have not been able to get the pain under control since. Been bouncing around from Dr to Dr for months, currently trying to get into a pain mangement clinic (no one ever returns my calls!). Any other CMP sufferers out there? Any young people dealing with this? Suggestions welcome!
-Shauna |
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Shauna1033,
Hello, Welcome to Pain Aid. It is nice to meet you.
I am sorry that I cannot answer your question, but I do understand being so young and dealing with chronic pain, I was diagnosised at the age of 24 with Degenerative disc disease and osteroarthritis, it has been half of my lifetime that I have been dealing with chronic pain.
Best of luck
Take care
Teresa |
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Dear Shauna,
Welcome to PainAid! Most of us do spend a lot of time going from doctor to doctor until we find someone that can help us.
The American Pain Foundation has links to resources that may be of assistance to you. This link (http://www.painfoundation.org/ResourceLocator.asp) will take you to our resource page where you can click on Find a Doctor. Perhaps there is another pain management clinic nearby who will return your calls.
Regarding your dental appointment question, I would recommend asking one of our experts or our Nurses to see if they can shed any light.
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 everyone,
I am a 47 yr. old wife and mother of three, 30, 27, & 23 years of age, al of whom are single. My eldest, a daughter, has three children, 13, 10, & 8 years old. My two sons have never married or fathered any children and still stay at home as much as possible. The eldest is a self-contractor in a very physical and strenuous occupation. My youngest is a full-time college student, who is seeking a career in photography. My husband, after 35 years in the resturant business, herniated several discs in his back while at work and is waiting for approval for surgery from his insurance. He also has been waiting for an appeal to S.S.I. and is currently disabled and disallusioned in regards to the "system". Myself, I have been afflicted with a disabling, chronic condition called R.S.D. or Regional Complex Pain Disease.
I am a very spiritual person and my faith, along with the love and support from my husband, has been the most important element in my battle against chronic pain. My body can be my greatest enemy, but the mind is the true adversary. Projecting a positive energy and being aware of your inward strengths releases an energy force that boosts the immune system and improves capabilities.
Life is too short to waste, limiting yourself because of complacity. Furthermore, to post my introduction as a member of the American Pain Foundation, I could describe my life as a daily struggle with severe chronic pain, including detailing the emotional, phycological, and physical symptoms that encompass the disease. But, I am more than that and I refuse to become just that....a product of chronic pain. |
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The 2earthangels,
Hello, and may I say... what you wrote about refusing to become "just a product of chronic pain", is wonderfully written. I am 44 and the mother of 3.. all girls, 26, 25 & 20, and the grandmother of 3, two boys, one girl...I feel exactly how you feel about letting my chronic pain rule my life,
I refuse to let the pain own me. Yes, there are days that it takes my body completely over, but I fight it back down and move on. My family is my support, my strength, my reason to keep fighting the good fight.
Welcome to Pain Aid and keep up the good fight.
Take care
Teresa |
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Dear the2earthangels,
Welcome! What a great attitude - to not become a product of chronic pain. We're so glad that you found us here and hope that you will participate all over our discussion boards and chats.
We even have a section where folks can discuss the impact of their faith on their pain. It's under the Personal & Family section.
Again - welcome!
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 everyone! My name is Mar and I live in MI. I am 51 and am married with 4 grown children and two grandchildren. I have ATN/TN
(Atypical Trigeminal Neuralgia/Trigeminal Neuralgia), interstitial cystitis and arthritis. I am in pain everyday and it is good to finally find a place I can come to and talk about my pain. My family doesn't understand that I am in pain all the time and I believe they are tired of hearing about it. I have tried many meds, but have had to stop them either due to side effects or them not working to relieve my pain. I do many crafts to keep myself busy and to distract myself from the pain. I hope to make some friends and share ideas about how to cope with chronic pain. |
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Dear rightside,
I'm so glad you found us here! Welcome to PainAid!
I'm a crafter myself and I know of others here as well who enjoy crafting. I believe you will find a discussion on that on our Off Topics board -- but, if not, feel free to restart one!
It can certainly be difficult to discuss your pain issues with your family at times --- no matter how supportive they are - they cannot truly understand until they've walked a mile in your shoes. You will meet so many people here who have walked that mile (and then some).
We look forward to seeing you participate in the discussions here.
Feel free to just jump in ---- and also join us for our live chats!
Again, welcome!!
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 am a woman who has lived with chronic pain for most of my life, in the form of Fibromyalgia, Myalgia, IBS, IB, and mechanical problems in the feet. As I get older. the pain gets worse which severly limits my activities. I have to take pain medication in order to be able to function with daily activities like cooking, laundry, etc.
It is wonderful to be able to read some of the articles here, because then I don't feel so alone. Thank you for providing this support. Capri |
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Dear Capri,
Welcome to PainAid and thanks for sharing a bit of your story.
I'm glad you found us here and I hope you'll check out all of our discussion boards and chats and feel free to jump right in.
Knowing we're not alone is the first step into holding on to hope during difficult times. We've got a lot of great resources here.
Just let us know if you need any assistance.
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 all, I am a 56 year young female. I am divorced with 3 grown children who live on their own. I work full time in the medical field.and live with managed pain full time. I have severe scoliosis with 14 fused verebrae. I still have severe pain which my orthapedic surgeon assists with medication and physical therapy from time to time. I have learned to live with lots of pain medication and the looks from family and friends saying I should try getting off of them. They just don't understand. Anyway, I thought this community might be a place to turn to discuss my issues with pain meds and life. Thanks for listening. Doselady |
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Dear Doselady,
Welcome to PainAid! I think many of us have similar issues with discussing our pain conditions with our family and even our doctors.
We have some publications that can be helpful in this area.
Check out our Treatment Options and Pain Resource publications. These would be great for your family.
The Target Chronic Pain notebook is a good tool for communicating with your doctor.
They can all be found on our publications page at: http://www.painfoundation.org/page.asp?file=Publications/Index.htm
You will find a great group of folks here who deal with the same or similar issues and I'd encourage you to jump right in and explore all of our great discussions and chats.
Please let us know if you need any help navigating.
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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Well Hi folks,
Don't really know if this is an appropriate place to post or not. I'm not 'new', just diff user name.
I'm rollercoaster...had to sign in and couldn't remember till I got here .....brain strain.
Felt I had to hop in. Was a bit mind blown by recent newsleter in the mail.
Have I been gone that long?
so much was about complimentary treatments.
lots of us have been on and still travel that road. Adjunctive treatment ....yea...., but this just seemed to be saying, once again, gotta do your selfhelp treatments (don't whine for MD 's help)..didn't say that in the articles...my opinion)
You are not TRYING hard enough.
I have done and still practice many of the therapies suggested in the recent paper....accupuncture...meditation..breathing ...massage...hypnosis.
So many of us have and do walk that walk....
Is it just me, or does this newsletter seem scary?
Doing all those alternative treatments did not, does, not return me to a functioning human being.... without a comprehensive pain (med)drug management program in place.
I have done it with meds and without.........I return to the couch (pain throne ) and spiral through the stages of grief over the loss of my quality of life and lack of strength and stamina needed to 'pull myself up and outa here....pain saps a lot of good intent.
This newsletter just took me back into medical offices that were horrendous.....
"you have depression? Yea!!!now we can fix your pain.....it is in your head after all"
Ah cheers folks, don't mean to be a downer...just who took over this place when I wasn't looking?
steelmelon |
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Hello,
I realized a lot of my reaction to this month's newsletter was probably a little 'knee jerk'.
I would love to always persue those complimentary treatments.
My husband and I however, really put a hole in our budget that we have never recovered from, trying so many alternatives that my ins did not cover.
Kinda felt like dangling the carrot. Massage is so good.
Myofascial release therapy really helps me, but it gets pulled out from under me every time.. just about when I feel hopeful about my progress.
I know those things do help and every little bit of med I can reduce means that much less side effect to deal with.
I've been mulling this over since posting and realized I should give credit for the possibility that APF is advocating for the availability of this treatment? Probably.
I do stay informed here, because I am very appreciative of the opportunity APF affords me to be active and knowledgeable about the current state of affairs.
Hasn't been the easiest few months.. coping with various denials. I got a bit touchy.
Very sorry if I made anyone feel their efforts are not very appreciated.
Just when I think I've left anger behind...........
Nan |
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Long time, no see Nan - Welcome back
I'm sorry to hear that you've been having a rough time of late.
I'm not sure if I'm reading your reaction to the newsletter correctly. Just to clarify - and I hope this is helpful - I'll try to respond to your concerns the best I can.
APF advocates for the use of a multi-modal approach to pain management. They recognize that not all treatment works the same way on each person and we all need to find the right combination of treatments that will give the most relief.
The newsletters usually have a theme with articles that are related. That doesn't necessarily mean that one treatment is being promoted over another or that any treatment is a cure-all.
There have been newsletters that focus on opioids, on depression, on fibromyalgia, on military/veterans issues, etc.
Education is our friend -- The more we know, the more we can advocate for better pain relief for ourselves and others.
Again - great to see you back. You can click on this link (http://painaid.painfoundation.org/ForgotPassword.aspx) and the webmaster will send you the rollercoaster password.
Take care and don't be a stranger
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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Hey there Nan!!
Long time, no see!!! I've been away for the past few months myself--due to illnesses in the family, plus...I got married Nan!! After 10 years of being together, Raymond and I finally said our "I do's"
I hope you are well, and DON'T let that pain get you down!!! We are all in this together!!!
Take care,
Patty {MRS.willieray!!!} |
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Hi everyone
I use to be a contractor, but I had an accident at work, took a fall and injured my neck and back. I lost everything, lost my job cause unable to work,lost my wife, she said sshe could not live with half of a man. I am hurt and angry and trying to start life over. I have a good doctor and he is goood to mee.
I sure am glad I found this place.
thank you again
Willard
Willard |
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Hi Willard!
Welcome to PainAid! I'm glad you found us, too!
Work injuries have their own special challenges when dealing with workers comp (been there - got a bunch of t-shirts).
I hope you'll join in on the conversations and get to know folks.
Please let us know if you have trouble finding something in particular.
We also have great chats - Monday-Friday at 11am ET, Monday at 9pm ET, and Wednesday 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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Wow, sounds like you have had one heck of a time lately. Hang in there and know that there are always folks to talk with about your pain issues. Admittedly some people will just judge and try to get you off all pain meds and tell you to "man up". They just don't understand. Their boat will come along at a later date and then they will have an understanding. Chin up and life goes on. Doselady |
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I also posted on the cronic pain chat. I am new to this so please be patient.
Hello all I just started reading this board. I never looked for any outside help before but I find it's time. I suffer from cronic neck and lower back pain and have for 5 years now. I get about 80% relief also with meds but I am still working. I want to consider disability but I am afraid that I will get rejected. I don't know where to start and could use some guidance. I work too much I guess I am a workaholic and I pay the price I am not in control of my pain it controls me so that's why I am considering disability. Can any one help me with the first steps?
Jborg99 |
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Hi all, I be me New and just found this whole area. I love it all. So I can help and I find answers and help for myself. I have had RSD for 11 yrs. Ouch.... But still Smile the best i can. This is who I always have been. Gentle Hugs ( you can tell this is a good day ; ) ) Me |
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Dear JBorg and CRWood,
Welcome! We're glad to have you here. We hope you will explore and participate and get to know all of the great folks here.
JBorg - on first steps for disability - Document, document, document. If it isn't in writing it didn't happen and doesn't exist. Talk to your doctor about this. You need an advocate. If your doctor doesn't agree with your assessment that work is too much for you - you'll have a more difficult time.
I'm a work-a-holic, too. I found that after I stopped pushing myself to work 60-80 hours per week when my pain was 9-10 24/7 -- my pain reduced a bit to 7-9 and with that reduction - I was able to tolerate phyical therapy so that I could get walking again. I'm sure that there are a lot of folks here who have been thru the disability process and will give you the benefit of their experiences.
CRWood -- Welcome! We're glad to have you. I see you've already discovered that we have several discussions specifically on RSD on the Specific Disorders board. RSD is unfortunately fairly common here and you'll meet a lot of folks facing similar issues. Jump right in and join us!
If either of you need help navigating, please just let us know. We also have daily live chats in the chat room Monday-Friday at 11am ET, Monday at 9pm ET, and Wednesday at 7pm ET.
Hope to see you around!
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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Thank you so much for your reply. I have been dealing with this on my own for so long that I forget that others have been down this road for a lot longer. I use to enjoy working but now it's a slippery slope. I like doing my work for others but hate what I am like when I am done. I had TPI's in my neck about 4 weeks ago and they helped with the deep pain but now it's back again with a vengence. I hate having to take meds to work and then they stop working in less the 2 hours and I am back suffering again. the only time my meds work is when I am not working. It's a rough way of living.
Thank you again I see my doctor for a proceedure on my lower back today to try and calm it down so wish me luck.
Jborg99 |
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Jborg,
Good luck with the procedure. I'm glad you found us here and were able to join us in chat on Friday.
There are a lot of great folks and great resources here.
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 came to chat this morning. Having trouble getting to sleep tonight. I just got diagnosed with fibromylgia and I'm trying to read more about it. I'm so glad to finally have a name for it and to have my doctors and my parents take it seriously.
Thanks for listening! It was nice to meet you all.
I'll try to come back soon.
Annie |
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Hi I'm izzie,
I'm new here. I had back surgery April 2000, L5, S1 low back. It was a failed back surgery. I have metal implants and a fusion. I also suffer with TMJ because of my back problem. I live in chronic pain 24/7. I came to this web site to make new friends and support other people with some kind of pain.
Thanks for listening
Izzie |
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Good Morning Izzie,
I see that you are up late tonight or early this morning. I would like to welcome you to Pain Aid. You will definitely find new friends here. This is a very warm and welcoming sight for people in pain. I have found many new friends and have gotten a lot of information about things relating to my pain issues.
If you haven't had time to look over the boards yet, please do so. There is a ton of information out there. I spent the first month just reading everything because so much of it related to me. It was a great relief to know that there are others out there just like me.
Again, welcome to Pain Aid and I hope that I will be seeing you come back as often as you can.
Judy |
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Dear ScoobyDoo and Izzie,
Welcome to PainAid! You will certainly meet lots of wonderful folks here who truly "get it." We literally feel your pain and we're so glad to meet you both.
If we can be of any assistance, please just let us know. Just jump right in and join in on the conversations or start a new one.
Again - Welcome!
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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Just a short introduction; I'm from Tennessee and have had
fibromyalgia since 1986 - diagnosed in 1993. I have been involved with several support groups and have done a lot of research on my own. I hope to gain more knowledge here and share mine.
JustTrying |
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Hello everyone, I am 43 and have suffered in one way or another my whole life. Two years ago I decided to try and get better so I had a 2 level lower spinal fusion with alot o hardware. Two months later I had another surgery to remove the excessive scar tissue. Now I still have DDD but I also have Failed Back Syndrome, and RSD along with fibro, arthritis, several buldging discs in my neck and migraines and TMJ. I have recently moved to Washington State with my amazing husband of almost 27 years. I am having BIG problems finding pain management. I have 1 young adult son and 1 young adult daughter who just graduated from college at the age of 21.
I do what I can to handle the pain in my legs. It is not easy and I am not out of my pain med so I am going thru withdrawls.
I am looking for contact to the world. It is very hard for me and I go into the black whole very easily.
I look forward to meeting all of you and hopefully providing assistance in some form.
Barbara |
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Dear Just Trying and Barbie,
Welcome! We're glad that you found us here.
There are so many great folks here and we'd love to get to know you and compare notes and what you have learned.
There is a Fibro board and RSD discussions are under Specific Disorders.
We also have daily chats - Monday-Friday 11am ET, Monday 9pm ET, and Wednesday 7pm ET.
We hope you'll join us. Just jump right in and join in on the discussions.
If you need any help navigating just 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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Hi and glad to have found this group...at least ppl here understand the consequences of chronic pain...I was hit by a truck 5 yrs ago, and injured all of my connective tissue (like fibro). I have global pain every day and medication and exercise have not effected it...I lost 147 pounds and still have the pain I had for yrs...was not able to sleep for more than 3 hrs, if that, waking up from the pain...now I sleep for about 5 hrs which feels like a dream (lol)...here's to a better tomorrow...J |
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Hi Curls...we're glad you found us, too! |
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I am a 57 year old female. I suffer from RSD, Fibro, Arthritis and back problems. Have had numerous surgeries on back and legs. My husband and I retired to PA four years ago. I lived in Maryland before that. Had a great doctor before moving to PA, but since moving here it has been a nightmare. I only live 50 miles from the doctor in Maryland but my insurance won't pay if I go outside of the service area.
The minute you tell a doctor here that you are in pain you are immediately tagged as someone searching for drugs. If that isn't bad enough I have yet to find one who knows how to truly treat RSD. I have had some tell me the only time they heard of RSD was in their textbooks in medical school.
So next week I am going to name of clinic removed for protection of poster Medical Center to yet again see another doctor. Meanwhile the only thing I have to treat my pain is Neurotin (which has caused me to gain a lot a weight) and lidocaine patches. Which doesn't do anything in controlling my pain levels. I have no quality of life. I pray next week will give me some relief.
Updated by pa_Carolina1 on 08/08/2008 08:21 |
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Hi BBeggarly...we pray with you! And, please, let us know how it goes next week.
The whole insurance thang is...well...a pain, isn't it!!???
Hope to see you on the boards and in chats!
~Mary Anne
APF/PainAid Team |
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This is my first experience with a discussion board so I suppose that I'll just talk to myself and if what I say makes sense to you, I hope that someone will engage in a conversation with me. I've chosen my login name, survivoracceptance, because I've survived my trauma some 36 years ago. I use acceptance as a tool to live as mainstream a life as I'm able. I accept what I can do & what I can't. I try to make every day a little better then the day before. I put all of my small trimuphs together and make them into great leaps. I had a severe brain injury and when I was injured, I could do nothing. I couldn't walk, talk, or care for myself. Today I've earned my Masters in Social Work, I'm a Disability Life Coach who is a Board Certified Expert in Traumatic Stress, with a Board Certification in Disability Trauma. |
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Dear Curls, BBeggarly, and survivoracceptance,
Welcome to PainAid! We're so glad you found us and we hope you'll explore the discussion boards and join in on the conversations.
As Curls said - you're in a place full of chronic pain patients where we truly do "feel your pain" and understand.
Everyone here is so awesome and we'll look forward to getting to know you all as well.
Please just let us know if you need any assistance navigating.
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 am not sure I have posted on this board or not so here goes. My name is Johnnie, 48 years of age and I live in Alabama. I have endured 4 low back surgeries, the last one a fusion with hardware and a severe staph infection that resulted in a prolonged hospital stay and still am taking bacterim for 6 months. I have a wonderful pain management doctor who I have a great relationship with. Currently I am on the fentanal patch, Opana and Percoset. Just started keeping a pain diary so it willhelp my doc know what goes on daily. I have a wonderful husband of 30 years who is a paraplegic due to Marfens (sp) Syndrome. We take care of each other. I am still trying to work everyday as a legal secretary but by Friday I am just give out and need the weekend to rest. Due to overall pain I think that I have Fibro but have not been diagnosed yet. Enough about me I would love to hear from anyone about anything! my email address is jfarmer@bakerdonelson.com. Peace and Love! |
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Hey Johnnie and Welcome aboard.
It's such a blessing to have not only a supportive husband, but a good pain doc!!! Good for you!
I used to be a full-time legal secretary...what a literal pain in the neck! I still work admin, but part-time and at a golf course (of all the things) and I like it much better.
You'll find lots of folks here to talk with and just plain have some fun with. We hope to see lots of you around!
~Mary Anne
APF/PainAid Team
Updated by PA_MaryAnne on 10/08/2008 20:20 |
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I've not participated in discussions very much, trying to figure it all out. And this stuff is really hard to talk about. Iguess that's why I found this place. t. lily |
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Hey t.lilly. I think that's why you found us, too. And we're glad you did. It is hard to talk about our pain, but we understand when people don't want to talk about it. Just jump in whenever you're ready and, in the meantime, we hope you find comfort in reading the stories of others like yourself.
~Mary Anne
APF/PainAid Team |
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Greetings and Salutations: I'm in my mid 50's and have lived a hard life. I have lower spinal stenosis and both knees going south on me as well as my ankles etc. etc. etc.
I have to work and I'm on my legs all day. It gets so bad to move I can hardly breathe. But I have no choice.
I've taken the same RX's for years without any increase because they only allow you so many and when I run short I have to use over the counter forms of pain medications.
It's a hobby I can do without "Pain".
I know there is worse than me out there and I do pray for them every single day.
There is no magic to any of this and I hate this slogan or saying I'm about to hammer out right now but I have to admit it's so true....."ONE DAY AT A TIME". That is my focus today. |
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Dear "Deleted user"
Welcome to PainAid! We're so glad to have you.
There is a security function on our boards which logs you out after a certain amount of time - which is why your post does not have your name.
When you log in - just check the box that says "Remember me until I log out." and that will keep you logged in.
I agree with what you said about one day at a time. It's so true - and yet - a cliche saying - maybe we'll have to come up with a new one.
Again welcome!
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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I am a 50 yrs old woman who has been through a lot! I've been fighting a battle with RA & OA for about 20 yrs. In the past 4 yrs I've had extensive c-spine surgery with 3 fusions and hardware and 2 hip replacements. I have been on pain management for about 8 yrs.
I never know how my pain level will be until I wake up in the morning. On a good day, I take full advantage of doing all I can; on a bad day I may barely get out of bed. I "medically retired" a couple years ago after working for 30 years, its been a hard adjustment.
Enjoy reading sites such as this one for encouragement and to provide encouragement to others. Also, always searching for advice on how to cope and get things accomplished while living with chronic pain. |
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Dear akybnz,
Welcome to PainAid! We're glad you found us.
Please join in on the great conversations here. We also have live chats daily and we'd love to have you join us.
Here's to more good days!!
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, Im new to this website. I am 40 years old, diagnosed with crps (rsd) about 2 years ago after 5 surgeries on my left arm with the last one being a radial head replacement after shattering my elbow and injuring my shoulder at work. The crps started in my left hand, moved up my arm into my chest and back on the left side, also into my left leg. Also have a ruptured disc from a previous car accident that still causes me problems and have had migraines since I was 11. Up to that point all my problems were on my left side. I would always kid "just cut me in half and give me a new left side and I would be great". I am beginning to get overuse injuries (tendonitis) in my right arm and just recently I developed a bone spur on my right heel. I feel like I am falling apart. |
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Hi Jenrsd! Welcome to APF/PainAid. We're glad you're here and we hope to see lots of you on the discussion boards and in chats. You'll find lots of other folks to talk with about rsd!
~Mary Anne
APF/PainAid Team |
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Hello, I'm Bev. Thanks for a great forum. It is hard to read other people's stories, but at the same time, it reminds me: when you have severe pain, it takes a lot of courage to get through every day. So many of you demonstrate that in your posts. Thanks again.
I've got chronic lower back pain and sciatica from a herniated disc. Surgery was performed 10 years ago but it didn't help much. In fact, I think it created or contributed to ancillary problems that have developed over time.
I am 54, divorced, and not currently working (but need to get back to work - can't afford to retire early).
Virtual hugs to all, Bev |
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Hi, Bev! Welcome!
We're glad you found us here. Yes - it can sometimes be hard to read some of the stories here, but they are inspirational as well.
We hope that you'll join in on the conversations. |
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Hi! The last time I was here was about a year ago. I had a lot going on then, and a lot has changed. I was ending my relationship with Joseph and moving and starting a new job. As all fibro people know, stress is not our friend. My job ended quickly because there was too much in my personal life and I just couldn't focus. Got to love chronis fatigue too. I did move in with my Mom, and we both love it. I wish I did this sooner!
My break with Joseph was not as clean as I would have wanted, lots of blame, lies and sh** from him. He works part time in a hospital and drives a cab from time to time. I did find a full time job and have been working since October. I like the job, medical billing, but I'm not crazy about some of the people I work with.
My hearing for disability came up in April. I filed for closed term disability and WON!! Collecting the money has been an issue. My lawyer was paid twice, a check was stolen and forged (it went to my old address) and they seem to be taking their sweet time giving me any answers on when I will get the rest of the money.
I thought I saw a few names from last year, I hope to re-connect and make some new buds.
Take care all!
suereadsalot |
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Sue ,
Congrats on getting your disability but sorry to hear about the issue with getting your money. I sure hope that gets straightened out real soon.
Kristy |
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Hey there, Sue
Long time, no see! Glad to see you back and joining in. |
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Thank you!! I am happy to be back! I really missed you guys!
suereadsalot |
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Hello, I'm new to this site. But I'm 25 and have rsd. I have rsd in both legs and my lower back. Now I'm starting to feel the exact same symptoms in my right arm. But the doctor really wont examine it because he says the rsd cant spread that way. Someone, anyone please help. I know I'm not crazy. I know what I'm feeling in my arm and that pain |
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Hello everybody !,I'm a 30 year veteran of mining & mine rescue.
My back finally revolted against the mining & I went down.
After numerouse test,Doctors,Drugs,Cortisone Injections,etc.
I was deemed non-surgical,Thanks to a good M.D. & Methadone the pain is bearable at this Point!
I did all of my mining in Colorado,mostly Leadville,I mined Gold,Lead,Silver,Zinc,and molybdenum.
And I am happy to be among friends who understand ! |
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Hey HardRock Miner: It was wonderful to meet you in Chat this morning, Welcome again to PainAid~! You took a giant step as a newbie to computers to join us, and I know you'll be happy here. Yes, it is safe to say that you are among friends who understand and do care! Myself, I love the daily support that Chat offers. I too can be having a "whoa to be me" day and come back down to earth after voicing my thoughts and feelings. Chat and the discussion board here keep me grounded. When the world around us doesn't see things our way, it can be very daunting. Support is key to our wellbeing. Your fellow "painiacs" will share with you their trials and tribulations of living a life with Chronic Pain. You'll notice that many of us, myself included (among other issues) are "backpain" sufferers. It sounds so minimal doesn't it? The pain is real, large and in charge! Life as a miner must be immensely physical...I feel your pain.
The Chat Schedule is Monday-Friday 11 a.m. EST, Monday at 9 p.m EST and Wednesday at 7 p.m. EST. I hope you'll join us again! Make yourself comfie and do some awesome reading, post to your hearts content too. Support makes the world go round...
Hugs and miles of smiles from Ontario
Gootsie |
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Thank You Gootsie,it means a lot to me to have understanding friends such as yourself & others to talk to!
I too am always ready with an open heart and mind to listen to my fellow "Painiacs"(I like that) and help however I can !
Hope this finds all of you as pain free and at peace as is possible!
HardRock Miner |
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Good Morning To All, Im New Here & trying To Figure Out How everything Works? Hope This Intro goes In The Right Place,Messed Up the 1st one & it landed in earlier entres. I Have Fibro,MS,Had Several Operations & Degenerative Disc Disease. The Pain Is Really Getting To Me & I`d really Like To Talk To someone Who understands Constant Pain. I Love Painting,Scrapbooking & Making New Friends & Especally Helping Others. Hope everyones Pain eases For A Long..... While! PurplePain. |
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Welcome to PainAid! We'll be glad to help you figure out how everything works.
If you're reading a topic (aka thread) and click on the "Add Reply" button, your post will end up at the bottom of the topic. If you want to respond to a particular post in the thread, you can click on "Add Reply" next to that post and your reply will appear indented right under it.
Feel free to jump in and join us on the conversations - and also join us in chat - Monday-Friday at 11:00am ET, Mondays at 9:00pm ET, and Wednesdays at 7:00pm 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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I am brand new to this message board. I have had chronic abdominal pain for almost 3 years now. I have had approximately 9 belly surgeries, several blocks, a stimulator, you name it and I've probably had it. The only "diagnosis" anyone can come up with is that I have an entrapped nerve in my belly. Chronic pain sucks. I would like to find someone who is going through the same kind of pain that I am going through. Thanks |
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Dear Brenda,
Welcome! My apologies for not seeing your post the other day - I'm not sure how I managed to miss it.
There are so many of us here who go thru longer periods of undiagnosed (or incompletely-diagnosed) pain. I would recommend checking out our Diagnosis & Treatment board where we discuss that. I'm sure we'll find someone with similar issues who can share their story.
Again - Welcome! We're glad you found us.
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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I am 61, have inflammatory arthritis, Fibromyalgia, and Chronic Fatigue Immune Dysfunction Syndrome. I have pain every day which varies from day to day. I am so not getting proper pain treatment. I get discouraged and depressed. It is very hard to get pain meds here in CT and very hard to find a doctor who knows (or cares) about CFIDS. My last Rheum doc gave me some Vicodin but he has retired, so who knows what will happen when I ask the new guy.
It feels so good to be be able to tell this to people who understand. Thank you. |
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Dear Nora,
Welcome! We're glad you found us. I have fibromyalgia as well - just as many folks here do. In fact, we have a whole discussion section here on fibromyalgia and we're currently doing a spotlight on our main webpage that you will want to check out (http://www.painfoundation.org/page.asp?file=ManageYourPain/Fibromyalgia/Intro.htm)
Also - If you're having trouble finding a doctor, we have links to several doctor locators that may help. Go to our Pain Resource Locator (http://www.painfoundation.org/ResourceLocator.asp) and click on Find a Doctor.
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 Jeannie I'm from Mass. and I have been living with chronic pain for over 10 years from lupus, R.A., fibro, M.C.T.D. etc. It's nice to have a group to come to where people understand what you go through on a day to day basis. It's hard to deal with family and friends not understanding. It's hard when you loose your job and you feel so bad because your husband or wife is working so hard and we can barely keep our house. The stress and anxiety that goes along with it all. I also need people who can understand what it's like to have doctors change your dx everytime you turn around and want to blame it all on stress because none of the meds. help. I'm looking forward to getting to know people who can share the difficulties of living in pain. Jeannie |
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Welcome Jeannie!
We're glad you found us. We hope you'll join in on the discussions here. We also have chats daily in our chat rooms.
You may also want to check out our new Spotlight on Fibro Discussion board and a focus on fibro on our website's home page.
We'll look forward to getting to know 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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I'm new here. Hello, I am 38F and live with the constant pain from a surgery a few years ago. What was thought as just a simple hernia repair surgery changed my life forever. I now get iloinguinal nerve blocks every few months along with taking pain meds everyday. I will check others messages and see if there are others like me. Hope I find you, other than my doctor no one seems to understand. It's a hard one to explain when you look just fine on the outside. |
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I am attempting to navigate around this web-site.
Is the live chat schedule still M-F at 11:00am EST?
And how do I get there when it is time? |
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Dear Lporta:
Welcome! Yes - there are many of us here like you. We have pain for all sorts of reasons - and often here the line - "well, you look fine to me." or something similar.
Please just jump in and join in on the conversations here.
Yes - Our Live Hosted Chats take place Monday-Friday at 11am ET, Mondays at 9pm ET, and Wednesdays at 7pm ET.
You can access the chat from the PainAid Home Page and click on Chat Room - or try this link - http://chat.painfoundation.org/Login.aspx
We would love to have you join us.
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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Thank you for the welcome. I will mark my calendar and try to join the next discussion at 11:00am chat scheduled. |
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I just moved into a new state and wondered how go to about finding a doctor that prescribes the meds I'm taking now. Is there some sort of listing place I can call to learn which doctors generally prescribe what? |
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Dear flward,
Welcome! I doubt you would be able to find a list that has which treatments doctors typically do -- but, you can find pain specialists in your area.
Check out our Pain Resource Locator (http://www.painfoundation.org/ResourceLocator.asp) - and click on Find a Doctor for links to various listings.
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 To All.
I am a 25yr fem, struggling with daily pain in my back. Because the pain was predominately in the muscles around my spine as well as in the spine (lumbar area), I was given all kids or reasons for my pain, and various anti-inflaatories. I had x-rays done @ the ER, looked fine. After speaking to many ppl, I was told that I probably have bulging/deteriorating discs, and that I would need an MRI to see any problems (that it would not show on x-ray untill its too late). Boy, was I in for a surprise when the MRI results came back! Bulging, deterioration, congenital scoliosis, hydromyelia, siringomyelia and some oter thingsI dont understand. I am waiting to see a neurologist and living with chronic pain, while mydctor wont do anything more until then (mainly due to my age), this is extremey difficult becvause I am a single parent of 2 girls (5&6), and had to drop out of college. I spend most days in bed, unless im in a hot shower or doing stretches to try to relieve pressure in my back.
I dont if I should have added more, but I think that is good.
Oh I live in Canada's capital!!! |
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Dear Anne,
Welcome to PainAid! We're glad you found us! We have a few Canadians hanging out around here - In face, we have an International Board to discuss challenges related to your healthcare system.
We hope you'll join in on the conversations here. You'll find a lot of people (including myself) with multiple back problems.
It's nice to meet you both!
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 from Northern Virginia...boy is it ever expensive here!!
I am 64 yrs old, and active despite spinal stenosis in lumbar spine, and cervical area as well as arthritis in hips, and knees.Sometimes I wonder how I walk...I take tramadol for pain and tyenol. I don't take too much tramadol, and probably should take a little more, but it interacts with another med. I have researched it. The docs don't think its much of a problem but my research indicates it is so who knows. I do know that its my body not theirs. I found this site yesterday and hope to get more involved here.
blessings;
Dee |
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Hi there Dee,
We're glad to have you here. We hope you'll jump in and join in on the conversation.
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 lporta,welcome. Don't worry, you are sure to find understanding and support here. Many of us know what it feels like to look absolutely healthy and feel miserable and pain inside. You are not alone and I am sure you will find many others here who are feeling what you are feeling or something pretty near to what you are feeling.
Hi Annereeves and welcome to you too. I am from Montreal so was real happy to see that you are from Canada as well. Boy, you sure got a long list of stuff thrown at you at one time. Hope your doc and neurologist will be able to come up with some help for you. Having two little ones to take care of with all the pain you have must be extremely difficult. While you are waiting to get news from your docs, I am sure you will find lots of support here and may even be able to get some information and clarification concerning some of the conditions you are suffering from. There are a lot of great people here. All you have to do is ask and someone will come up with information for you or direct you to where you can go to find out what you want to know about.
Hi Dee and welcome. Loved what you said about it being your body, not theirs. Right on. I am sure you will find many people here who feel as you do.
Hugs,
Marilyn |
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Hey annereeves: Welcome to you from Ontario! I've been hanging around here for a few years now because the support and the members are fantastic! You'll be happy here! Tis a good thing that you had your MRI, it looks like you have multi diagnose's that require pain management. Is your Dr. helping you with releif of any kind? Sometimes you are right in that age is a factor in treatment, but with multi symptoms and 2 lil girlies at home you need it. I'm sorry you had to quit school due to all of this, that's a blow for you.
I hope your Dr. will refer you to PM where your pain issues will be addressed. Being in a big city there are quite a few and some newer ones have opened recently. I've listed some of them on the International Board here: http://discuss.painfoundation.org/topiclist.aspx?cbbsid=40
Here is a super helpful link to our Pain Notebook. The pain diary is a useful tool to explain your intensity and triggers throughout the day. Take this to your Dr and see if it will help him to understand: http://www.painfoundation.org/Publications/Notebook.pdf
If you feel up to it, won't you join us in chat? Chat helps me to get on with my day, the caring and sharing for others is a feel good thing that really seems to help. We meet daily in Conference Room 1 at 11 am your time. Mon. nites at 7 pm and Wed. at 9 pm you'll find us there too. 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. The Chat Room is open 24/7 and is often occupied even during the off hours.
From 1 part of Ontario to another, with hugs and miles of smiles,
Gootsie |
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Hello, I am new to the computer and the web. But not to PAIN! This has taken over my life. My little sis has become my life saver sending me here for help and support. I'm 47yrs old,married 29yrs. 2sonsmarried &5grandsons. I was injured on the job 4 yrs. ago. I have been diagnosed with reflex sympathetic dystrophy/CRPS II. I have decided to seek answers by asking others that have the same issues and problems or have had & the experts that have the resources to help. I'm looking forward to making new friends,especially since this disorder has pushed away my old ones.
nanto5 |
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Welcome nanto5,
We're so glad to have you! There are a lot of folks here dealing with the same issues- and, yes, you will make wonderful friends who truly understand.
We live with pain every day - but, we also have hope and support of our painiac (our little nickname for ourselves) friends here 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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Thank-you for the welcome PA_Carolina. I've been familierizing myself with how to find my way around, so to speak. I have a wc case, with in which they deny, then you go to a Dr., then court, the whole situation has taken its toll on me. The Pain mngn.Dr. i had was for the r-hand after i had problems with L-shoulder surgeries causing the almost similar symptoms. The court ordered Dr. for the shoulder couldn't figure out what was wrong so MMI'D me &referred me back to pain mangn. Dr. When I went back to him he says not authorized to treat the pain due to left shoulder. Then started taking me off all medicine even though the r-hand still has RSD/CRPS . I even asked what other treatment is available for this? To my surprise this was his reply(I needed to learn how to cope and take Tylenol). He'd been treating the RSD for 3yrs. He then had my medicine changed & by the time I wasn't taking anything except the neurontin, I was in the most intense pain since when he diagnosed me, even worse now that the whole left side is invovled. The strangest thing about this is, he is the insurance Dr. & the insurance well they just got bailed out ! How do you get help from a system thats suppose to take care of your medical needs? I can't help that this disorder is an unseen medical problem. My PCP Dr. is helping by having me on only what the other Dr. did but this PAIN is INTENSE! He wanted me to go to another specialist but the Dr. wouldn't see me he might not get PAID!!! So here I sit taking this Dragon of pain ON!! If anyone knows how to get help to be treated for this please let me know? |
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Hi, everyone. I am new to this and am thankful there is a web site that people can share experiences, knowledge, hope. I am 52 with Fibro/CFS, COPD, Ehrlos-Danlos,Lymes, migraines and hemoplegic migraines,TMJ. There are no drs. in my area that are worth the paper their names are printed on. Sorry--venting. At this point my fibro is worse than it was even 6 mos. ago. The 'nurse' I was seeing told me that I could not be in as much pain as I say and the pains are nothing more than age related. Of course she also said even if it was fibro there is nothing that can be done--so just live with it... Good medical staff.... Anyways, thank you for putting up this board. Just having people that understand is a great comfort.. |
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heh I came across the website by accident today and read a few letters that I can identify with.I know definitely that I have DDD and my pain management doctor said I have fibromyalgia but does not want to advertise it because he said when soemthing else is wrong medical staff automatically assumes it is fibromyalgia related.I have had accidents throughout my life but never broke a bone till I was about 40.I jogged 10 miles a day,was very athletic inhigh school and rode ahorse until about 10 years ago.I rode from16 to 30 hours perweek.I have been rough on my body.The past 12 years have been progressively worse.When I started with treatments the ortho dr said put a rod in my back;Not;so I went to pain management and the goal was to keep me upright.I had discogram (I do not recommend them) and nerveblocks,epidurals,steroids etc..I went through it all.Between my asthma,COPD DDD I was pretty sick from all the steroids.My immune system was shot.I was in the hospital for 12 weeks off and on and could not work.If I take pain meds my asthma kicks in.I have been denied SS benefits and have been waiting a year for a hearing.My husband does not fully comprehend why one minute I can walk without help and the next I can barely move.When I read the letters on the website,they all included me...sad to say I am glad I found someone else who suffers so that I can have someone to talk to and they me and we know really what each other is going through.Anyway,now that I have found you perhaps it will get me through just one more day...thanks for being around! |
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I am KadenStar but it says deleted authorAyway the previous message was me
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New to this. Not new to FM/CFS & IC. My life has been turned upside down by the limitations I now have. I do have some hope now though. I am learning to deal with pain without narcotics. Meditation, prayer and stretching. The most difficult part is finding some peace. My mind never stops and my muscles are constantly tightening up.
Onedayatatime |
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Hello All. Forgive me, but I'm not the most technologically saavy person, so it may take a while for me to get the hang of this. I was diagnosed with fibromyalgia about one and a half years ago, and have suffered severe right hip/leg pain for around eight months. I am desperately seeking people who can relate to living with pain. Also, I am determined to work toward changes in the way patients with chronic pain are treated. My entire experience with physicians/insurance companies/family and friends has been negative. I've found that people with pain are treated as suspects first, patients last. I am hoping that by getting involved, I can help bring about the changes our healthcare system so desperately needs.
dpeete |
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Wow! Welcome to both of you. You are both going to fit right in. We all have some kind of pain. No one is worse off or better off here. The bottom line is we all suffer. I too have FMS, DDD, Arthritis, cancer survivor, etc.. etc.. etc..
Please feel free to read through the boards. You are going to find alot of people just like yourselves to commisserate with, to laugh with and to learn from!
Again, Welcome |
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Hi, Yes, I' m kinda new here so please be patience with me, I 2 live with pain and living with cost and the hardship with my family and friend's. I pray every day and that help's alot, medication is a blessing only the more u take, The more it takes to control but without it, the pain and withdraws are to much and u suffer even more...sometimes trying to manage with less is helpful, if possible like non narcotic drugs but help with breathing to me is better with narcotic pain relievers and movement, but trying to relieving pain and the mental processing is hard 2...the hardest to me is that no one understands how bad it really is, and the longer you live with it the less they understand. so may God b with u and this is only my opinion. check with u'r doc:-) |
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For many opiods are the only thing that help, for others, not.. IT is a difficult road to find treatment and we are each so different it is amazing how many things they have to come up with to treat each of us. I am happy you are being treated successfully. |
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Hello--I am new here. I had surgery almost three years ago on my neck. Three vertebrae were fused (c5/c6 & c6/7) and a metal plate was added. I have been on narcotics every since starting with hydrocodone. I've been through lots of physical therapy and I do yoga, meditation, etc. I'm had to quit my job and am on disability. My tolerance has of course increased and I'm now on Avinza (24-hr slow release morphine capsule, 30 mg) and Percocet (7.5 mg up to 3X/day). I am physically dependent and want to wean myself off although I have constant pain even when taking meds. I know this is a very common story. I have tried going through the pain management group to do this but they act like it is no big deal and have tried to take me off too quickly. They are also VERY reticent to lower my dosage and tell me I shouldn't be doing it. I've also talked with a detox center that uses suboxone but they insist that I immediately terminate my pain management contract when I start their program and I'm not ready for that. Any advice is welcome
Mary B. |
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Hi Mary,
If it were me, I would be talking to my primary care physician. He or she is the one that knows me the best and can recommend the type of taper that is best for you.
Good luck and Welcome to PainAid |
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Hi Im a Newby. To the site, unfortunately not to pain. Figured I am up half the night most nights so I might as well find company. Im sort of a wreck in progress, I have had sleep issues for years and now arthritis, disc disease, connective tissue disorders, fibromyalgia, bursitis and Im sure I forgot a few, have crept into my life.
That really was hard to write, I don't usually admit to my "issues" I have spent years trying to hid em and since I cant anymore I figure I better learn to manage them. |
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Hi there Achy Lady,
Welcome! I think learning to manage our issues is a great goal! We're so glad you're here. We all deal with all sorts of issues because of pain (most of them are similar) and there is definitely strength in numbers.
We hope you'll jump right in on the conversations and feel right at home.
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 am the wife of a Viet nam veteran. He suffers constant pain from numerous herniated discs, bone spurs and scar tissue, which all began years ago from serious wounds that he suffered in the war. It greives me, to see him in so much pain and I just do not know how to help him any more. I will try to post more info in the Veteran's boards. thanks so much for the site. |
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Dear barbnel,
Welcome - I'm on my way to the Veterans Board right now to read what you've written.
I'm a veteran as well and know about the extra challenges dealing with the system can bring.
We have a lot of helpful information on the boards and on our website.
Please let us know what we can do to assist 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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Any know good Pennsylvania doctors?
Basically, I am post 2002 L5/S1 back surgery. The surgery was very painful (even though only performed by endoscope). Since that time, even though I have improved from my prior condition, I am in constaint pain. Some docs have tried to treat (some epidural/nerve root shots work for a month or so (perhaps about 3 of the 12 or so were good, another 3 were good for about a week or 2, the other 6 not so much.
Anyways, any ideas -- who are some understanding docs especially regarding medication in central PA. |
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Hello! I am JP and I am having a bit of a crisis. I am not suicidal but I am so frustrated I really don't know what to do. I have a very long story and have told it so many times over the last four years to only have people treat me like I need to just suck it up and get on with my life. Briefly my story although I feel is unique, I fear it is not. I am a white male 52 used to be 6 ft. tall. I am not obese 205. Until Aug 2005 I had never had ANY surgery. Since then I have had T-2through8 fusion (that took 2 surgeries, don't ask) but low and behold I not only didn't get any relief it actually in hindsight cost me dearly. I have since lost my job, lost my home and now living in a rent house while my wife had to go back to work. I really don't mean to complain as I have lived a truly blessed life.On March 22 2008 a woman in a hurry to get home from a church function blew through a stop light at 60 and did 13 K damage to my car. As I am sure some of you have already jumped ahead... : ) but no my thorasic spine is fine.
I blew 2 lumbar disc and my new surgeon wants me to have surgery and can't understand why I am not real anxious to get it scheduled. So that is an abbreviated (there was another thorasic surgery to remove a 5mm ostiophite from my t-5-6 area on Jan 15 2008. Well that's my introduction and I'm sticking to it.
JP |
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Hello everyone, my name is Dwayne Allison and I am 35 years old. I have Ankylosing Spondylitis, with 4 bulging discs, along with Crohn's Disease and Rheumatoid Arthritis. Alot to deal with at 35, don't you think. I am coping, barely. I hope to hear some good remedies to chronic pain and how to approach pain management doctors into getting you on the proper regimen where you can function.
Thanks everyone,
Dwayne/TX |
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First you need to find a pain managent for you, some places deal with most spine problem and spinal injections etc... where others deal with different types of pain, offer different types of treatment fro meds, injections, stimulators, pain pumps to holostic healing where there is PT,acupuncture, massage, reike also biofeedback, pychcologist who helps you deal with issues with youself, family,work caused by chronic pain. PM is usally wonderful they listen to you and try to come up with regimens that work for you, and keep working so you can function to accesible level for you. when you come in for appointment make sure you have a referral if need one, all documents, reports, any radiology, pt or anything that pertains to your condition. I have hoped I helped! find one your comfortable with from very beginning because you will have a continous working relationship and will be seeing him or her once a month. So you will want to feel comfortable talking to provider. I love the pain Management I go to. I was afraid to go for the longest time because of what others might think,which is stupid because I am the one who suffered needlessly for it. Pain Management is the best thing I have done and do not regret it. I hope legislation will one day come out with a law stating that someone taking Rx narcotic medication at work will not lose ther job if it does not interfere with your performance. Well good Luck and please roam the message boards so we can see how you doing!!!!
ech |
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Hfi I am 55 yr old with chonic back and leg pain that got worse after two back surgies. I have been on meds for about 6 or 7 years and wish that at some point the world and health care would regonize pain as a chronic disease that no one wants to have andtreat us like any other person with a chronic condition.
stiffme |
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Hi! I am 30yrs old with 2 back surgeries under my belt. The first one was at 19, I had a neurofibroma taken out of my spinal column. Then at 28 I had a fusion of l4-l5 to help with pain from bulged disk from first surgery. I am now in pain management due to still having pain after the surgery. I have not been given a clear diagnosis but have seen Degenerative disk disease, spinal stenosis, and failed back surgery syndrome. As for now my pain is managed by medication. My future hubby also has back trouble too. He has 2 herniated disks. One of which was fused in 2006. He still had major pain after that and has been being seen by more docs than we can count. He also suffers major depression. He is about a week away from his pain pump trial. So I will be around for both of us. |
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Hello
I am a sufferer of TN and have been given the opportunity to have the cyberknife surgery. I was hoping for some insight into your thoughts on the procedure and if there is anyone that has had it done that might want to comment.
Jenipher, Michigan |
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The user name tells the story. Vertabrae injury to neck years ago, weight lifing and athletics at a level way beyond the norm for my age. I was getting old. And still playing racket ball in 90 degree weather (outdoor) running and lifting,,,,,,,,,,
heavy weights. Got stuck in one position one time and could not move. Rye neck, then x ray said serious injury. Ten years later to foraminal narrowing, numbness, osteoarthritis.
I hope to learn here. Thank you.
Overdidit |
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Welcome all!
Glad you found us here - It's good to see so many new folks showing up.
The stories all sound so familiar -- we all have a lot in common. We hope you'll jump right in and get to know the great folks here.
If we can be of any assistance in finding anything, please just 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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I really need your help ASAP. I'm starting out on this adventure to help ease my chronic pain. I have doctors but I need a complete facility, one that includes management, psy. support, and some sort of PT. I would like to start out with a local support group and go from there. My history; T12 L1 burst fx 1985 W/ herrington rods and fusion. In 1986 the rods were removed due to the fact they were being discarded from my body. Fusion of T2-S1 W/ rods and petical screws in 1993 due to severe lordosis. Hardware removed in 2002 hoping that would help my pain plus I carried a low grade fever for years. In Oct. 2008 a spinal cord stim. was put in and it does help w/ my severe hip pain. My DX now are; L1 compression fx, kyphosis, DDD in lumbar, osteoporosis, RLS, depression, and a few more that I can't remember at this time(memory loss, Due to meds.). The kyphosis is so severe that my breathing is affected and I have 'stabbing' pains when I breath and in the center of my chest. I'm a 43 year old female and I'm not quite ready to give up. Thank you for your time.
jennlo1117 |
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Dear jennlo,
Welcome to PainAid! We're so glad you found us here!
I'm glad you're not ready to give up -- you shouldn't. There is so much about there to help chronic pain patients like us and more is being learned all the time.
PainAid is a great place to interact with fellow pain patients for support and we have lots of great information and experts as well.
Our website is full of great publications and opportunities for advocacy.
We hope you'll explore -- join in the conversations -- and share.
The most important thing to remember is -- You are not alone!
If you need any help figuring out where to start or finding specific information, please just let us know.
(((hugs)))
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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Welcome Aboard Newbies! We're glad you found us and hope to see all of you around and about the site and at chats!!
~Mary Anne
APF/PA Team |
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Hi I'm Nancy. I had a workers comp CNA accident occur 3 years ago with an ongoing case (hopefully coming to close soon) I got buldging disc's that pinch my nerves in my lower back and neck. The icing on the cake has been Fibromialgia.
This case has been completely frustrating and at times intolerable to run everything through the OK of W/C.
Now they are trying to just treat me with pain meds at a pain doctor I have to drive 1 1/2 hours to get to every 2 weeks or so. I've had so many bad drug reactions in the past 3 months it's wearing my body out. My Mom suggested I try and find someone to talk with/or listen to on line and I found here. Reading others storys is a big help to me. I'm generally a very hopeful-2 job working person that's been out of commission now for 3 years.
I wish the best to all and look forward to interacting and better days ahead.
hugggs
Nancy
Nancysmagic
Nancysmagic |
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Hi Nancy - Welcome to PainAid!
I'm so sorry that I missed your post earlier.
Our stories are very similar - I had a car accident involving workers comp - with multiple injuries - and now I also have fibro.
Definitely a small world out there. There are lots of people with similar stories and this is a great place to share and get support and encouragement.
Make sure to check out our board on fibro.
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, This is my first post...And I would like to introduce my self...I have suffered with Chronic pain for over 34 years..and I am 49 years old. When I was 14 y/o I was run over by a Motor boat, while learning to water ski, I was in the water at the time. The propellers severed both ulnar nerves, which left me with permanent nerve damage. As well as spinning me around slicing my back. While it was a miracle that I survived the accident, I have had a life long battle with pain, and both physical and emotional scaring. I said and did little about either until about 4 years ago, Not that I did not want help, but it was hard to get help for such Chronic Pain. Although I had asked for help years ago, I felt as though I was never taked seriously to my previous complaints of chronic pain. I usually was met with statements from the Dr, like."You must be depressed try this antidepressant". Or It's all in your head". Or "We can't really find anything" After a full Psych evaluation, and neurology work ups My results confirm, what I have known all along, that I suffer fron CRPS or better known as RSD. Or what my Grandfather had from loosing his arm in WWI "Phantom Pain". Every time I have damage or injury(ie: surgery, trauma..etc) to a nerve in my body to this point, my brain misfires or signals "PAIN" ..so it contiunes to travel to other area's of my body, which is exhausting. I am very happy to have found your website. Having your network will be a huge sense of comfort. God Bless you all. I look forward to sharing with you all. If I have learned anything from my pain, is patience, and endurance..
and people like you.. |
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Dear kbartucca,
It was good to "meet" you at our chat on Tuesday and we're so glad you found us as well. You will find that many of us have very similar stories and we gain insight, information, and, especially, support & encouragement from each other.
We hope you'll join in on the conversations here and that we'll get a chance to know you better.
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 fellow pain sufferers. I'm a 54 y r-old woman suffering from diabetic neuropathy. Right now I'm in agony. For 14 years I got pain relief thru methadone. It worked well. Then my NP in Nov 2008 decided to drop me. There have been several arrests/investigations of local Drs. and the health care professionals are running scared. I went into the hospital, was taken off methadone, and put on a fentanyl patch, lyrica, and various psych meds. Since then, I can't even find a doctor to prescribe these inadequate meds. Now, I take motrin(ibuprofen) & my quality of life is 0. monari
monari
monari |
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Dear Monari,
Welcome to PainAid! We're glad you found us.
It's terrible to hear that legitimate doctors, doing everything right, are afraid to treat their patients -- and, unfortunately, it's not the first time I've heard that story.
We have a lot of resources on our website and perhaps you can find a new doctor who is willing to treat you.
Here's a link to our Resource Locator.
http://www.painfoundation.org/ResourceLocator.asp
Also - you will find a lot of support here from people who truly understand because we live it every day.
We hope you'll join in on the conversations here and share your experiences as well.
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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My name is diane...and i'm canadian...been dealing with chronic pain for 2 years now...i have been off work for one year today...i feel like i've been trying everything with no success...getting very discouraged...the chronic pain started with carpal in both hands...then worked its way up both arms and into the neck and shoulders...very difficult to do anything...
depression, pain and sleepless nights...just like many of you...
i'm going to read through this website looking for help... |
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Make sure to check out our International Section as well.
Welcome aboard!!
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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My name is Jessi, I'm 65 and have been on Pain Management for about 9 years. I've written all about my self on another parts of this site. This is the first time I've bloged or whatever is called.
When you are in pain you really don't want to sit around using your hands to type, unless it's something that dominates your life.
Pain dominates my life. Everyday is a day I do what ever I can to stay out of pain. Getting out of bed.... That's the first chore of the day and it goes on from there. I'm sure whomever is reading this, This is your first chore of the day, as well.
After reading many of the posts, I figure I'm "lucky"
because my pain is "managed". [More or less].
Good luck to all of you, who are suffering, and God Bless
jessig13 |
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Hi Jessi and welcome! I'm 50mumblemumblesomething years old and boy oh boy do I know exactly what you mean. I normally have daily lower level back pain, but can get around pretty good, but when my back gets thrown out of whack, I can barely move. The older I get, the more frequently my back "goes out" and the longer it takes to feel "normal." And you are so right about getting up out of bed on a bad day!
Anyhoo, we're here for you and we care about you and we hope to see lots of you around the boards and in chats. Please let me know if there's anything I can do for you! And may God bless you, too.
~Mary Anne
APF/PainAid Team |
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Hello, I am a chronic pain patient. I am amputated for 32 years.
My worst injuries are actually, at this point, from "overuse" of my remaining good limb. I live in Oregon and am a Medical Cannabis Patient through the OMMP (Oregon Medical Marijuana Program).
I am not able to use traditional prescribed or OTC pain relievers due to "hypersensitivity" to all "pain" drugs/alcohol since about 1993. If given a choice however, I would not Want to use them due to the oft-times disastrous side-effects.
Medical Cannabis has managed my pain very effectively for about 7 years now. I am so grateful for our program that allows the use of this most contentious Herbal Alternative Therapy. The one thing I can attest to is the quality of my life has been greatly improved.
FredaMae |
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Dear FredaMae,
Welcome to PainAid and thanks for sharing your story. We do have an Amputee Section under our Mil/Vet Initiative - here on the boards and also on our website - that may also have some helpful information.
I can imagine that overuse is a common problem. Perhaps there are some helpful tips on this.
We hope you'll join in on the discussions here and get better acquainted.
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,
I'm not certain why I chose now to introduce myself,as I'm not having a good day and as usual not very sociable.
I want to be sociable and I guess I just need to reach out to see if someone.....anyone would ever take me seriouly. I'm sick of sounding like Captain Sadsack.......perhaps it's karma for ridiculing all those people before whom I could never empathize for feeling selfishly sorry for themselves.
But now I'm in this situation, not only do I feel guilty, but tired, sore depressed and wishing I could find an answer or at least sombody that may be willing to help me o about finding the help I need, before I go completely insane.
I'm a 43 year old woman who has sufferred chronic pain for the past 6 years. I live in Georgia and have 3 gorgeous kids aging 6, 13 and 17. My life is dwidling away and I'm at a complete loss as to what to do. I never, ever thought I could get so depressed and suffer so much pain. I always thought I was strong and competant (I always kne spelling was my weak point!), so it is taking it's toll,all this thinking-just how on earth I got here, and will I ever be the same again-do I even have the energy to try anymore?
Well, enough about my thoughts and why I am here.
Basically I would like to really get educated as to how I can -just one last time, manage my pain and fid one little reason as to why I should. If anyone can tell me how they begin-what kind of doctor they should see and what stages you should go through to find the correct care.
I would very much appreciate it.
Thanks
Lee |
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Dear Lee,
Welcome to PainAid! I'm glad you found us here.
First of all - I wanted to address your current mindset. We've all been there. I think it's a natural thing to become depressed when surveying all that we have lost to pain. The trick is...not to stay in that place.
I spent a lot of time looking back...I must have said dozens of times, "I just want my life back." What I know realize is that I can never have my life back the way it was. Even if there was a cure for my pain tomorrow - I will be forever changed by what I have experienced.
Instead, I choose to look ahead (and not too far, because that can get depressing too). Set small goals. For me, I spent the first 4 1/2-5 years in a wheelchair. Little things like - being able to tie my shoes again - were big accomplishments - which I celebrated with my painiac (that's how we refer to ourselves) friends here at PainAid.
I think getting started with the doctor/treatment thing should be the same way. Set small attainable goals and celebrate each success.
We have tons of education and resources -- and, of course, support here.
To get you started:
Finding a doctor - check out our Resource Locator at http://www.painfoundation.org/ResourceLocator.asp
Knowing what kind of doctor you need can be a tough one - especially if you have multiple pain conditions. Education yourself on the types of pain management specialities. Find out what types of treatments your potential new doctor does (some only do injections, some only meds, etc.).
Most of the folks that I know who are successfully treating their pain are doing so though a multi-modal approach. our Treatment Options book will give you some ideas of treatments to discuss with your doctor.
Check out Treatment Options and our other publications at: http://www.painfoundation.org/page.asp?file=Publications/Index.htm
That should get you started. You will learn much here at PainAid from your fellow painiacs.
Welcome aboard!
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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recent spinal implant neurostimulator thorasic spine looking for others to share information and experience rich |
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Hi Rich,
Hey, welcome to PainAid!
I have the SCS and the placement is the t-10 to work on the lumbar area of my spine.
DWBH |
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Hey there rlm,
You have probably already seen it, but we have several discussions going on the stimulator that may be helpful to you. This one (http://discuss.painfoundation.org/replies.aspx?cbbsid=16&tid=4727) is the longest running, but there are a couple of other ones on our Diagnosis & Treatment board.
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 am 37yrs old and have chronic back pain and neuropathy in r leg. I live about 60 miles south of Chicago and am trying to find a pain clinic that accepts Medicaid patients...Thanks to our EX governor many Dr.'s will not accept pts with medicaid because they do not get reimbursed. Does anyone have any suggestions or know of a GOOD pain dr. in the Chicago area? |
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Dear Arnso,
Welcome!! Regarding finding a doctor - of course, word of mouth is the best way - but, we do have a Resource Locator on our website that may be helpful.
Click on this link (http://www.painfoundation.org/ResourceLocator.asp) and then click the "Find a Doctor" folder for links to multiple doctor locators.
Hope this helps!
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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Welcome to lee, rlm and arsno! We're glad you found us and we want y'all to know that we here at APF/PainAid believe you, we hear you, and we care about you. We hope to see lots of you around our website. Please tell us more about yourself, and keep us posted from time to time with updates. You all are in our thoughts and prayers. Keep a good thought!
~Mary Anne
APF/PainAid Team |
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Hi, I have Avascular Necrosis (Ortheonecrosis) of the hips, had replacement of left hip 2/10/09 and will have right hip totally replaced yet this year. we just took x-rays of my knees, it feels like I have AVN there also, I also have degenerative disc disease, two (2) herniated discs, and other things wrong with the spine.
I have suffered from pain off and on my entire life, but the last 2.5 years have really been bad. I am looking forward to learning more about pain relief so I can get off of all narcodics.
I live in Miramar, Florida. |
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Welcome clnan,
You will find a lot of helpful information here on our boards, plus some really supportive people.
Also - make sure to check out our publications page (http://www.painfoundation.org/page.asp?file=Publications/Index.htm) - Particularly the one on Treatment Options
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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I am a 44 year old male who is dealing with chronic, disabling back pain from my lumbar spine to my cervical spine. I have a host of problems related to my spine beginning with scoliosis (last measured as a 41 degree curvature), stenosis, degenerative disc disease, failed back surgery syndrome, two herniated discs (one lumbar/one cervical), two bulging discs (one lumbar/one cervical), and osteophytes at just about every joint in my spine.
I'm happy to find this support group, as lately my depression regarding my pain and general dismay with life are really taking their tolls on me. I'm currently battling with my disability insurer who is trying to close out my claim, and when I went to talk to a lawyer and heard how high his rates were I totally felt despondent and alone and helpless. I know there must be some groups out there to support and help us fight for our rights (hopefully this is the group I've been searching for right here!)
I have been a teacher for the past 19 years, but had to leave work on disability last year due to the constant pain and headaches which plague me 24/7. I am under the constant care of a very good pain management doctor as well as a psychologist, but even with all the medication I take and the counseling I get, I still get very depressed and just sick of this all. I just feel like no one understands what it is I'm going through here. I'm 44 years old - I have a long life ahead of me - and I don't want to live my life like this forever.
Sorry for the gloomy greeting - I just wanted to introduce myself and I'm hoping to find some friends and support here from other people who are going through what I'm going through. Hopefully I came to the right place. Kevin |
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Hi Kevin...I understand what you are going through as I suffer from many of t he same things...failed back surgery, failed hip fracture and surgery, my jaws were badly broken in a motorcycle wreck at a young age, I also have scoliosis, herniated disks, osteophytes ( painful little suckers) and more. Please don't feel alone. There are many of us out there. One of the biggest problems i am finding is a doctor to treat me. Good thing you have someone to take care of you. I hope your pain eases and you feel better. |
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Hi Kevin,
I "know" you from another pain group (can't remember which one though as i belong to so many) I'm glad you found this group as there are so many helpful folks here who understand exactly what you are feeling.
I too am on disability and awaiting to get approved for SSDI.
Nicole |
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How do you go about introducing yourself? I cant get the site to cooperate |
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Ok I think I see how this works. Hello everyone, I am 48 years old with 2 failed back surgeries, a spinal fusions which went disasterous, if that wasn't enough I broke my hip 3 years ago and it failed to heal. I don't want anymore surgery on it and there is too much risk of refracture. I am in so much pain I have lost my passion and interest in life. That is not to say I would do anything, its not like that, I am tired of living like this. I need to find a doctor who will treat my pain and not treat me like some second rate citizien. I don't know how one goes about this, I have looked in my phone book but met dead ends all the way. I also had both my jaws badly broken ( no not by a man but a motorcycle) and they cause me a lot of pain. One blow to the face would kill me because my facial bones are so thin. How does one get help? |
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Welcome goldengirl,
I'm glad you figured it out, please just let us know if you have technical questions like that - We're here to help.
On the doctor issue - that is a challenge and I think that the best way to find a good doctor is word of mouth -- but, we do have a Resource Locator with multiple links to sites that have doctor listings.
Click this link (http://www.painfoundation.org/ResourceLocator.asp) and then scroll down and click on the "Find a Doctor" folder.
Again, welcome! We hope you'll join us here at PainAid - It's a great place to get support and encouragement from people just like you who really understand. We're all pain patients here and we "get it."
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 ame is Mike and I have RSD/CRPS for 15 years.Any one else out there with the same disease I'd like to hear your story.Mike |
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Lee- You sound so discouraged and very depressed. Have you spoken to your doctor about an antidepressant? Chronic pain can grind you down until you feel there is no hope. But, there is always something new to hang on to. You are right to want to educate yourself, but, being depressed can also be a block to learning. Please don't discount speaking to your doctor about depression. Not only are you having to deal with the restrictions your pain may impose on you, but you also need to mourn the "you" that once was. I know it won't take away your physical pain, but maybe an antidepressant might help with the mental anguish you are feeling and help you to cope with your everyday struggle. If not for you, please do it for your kids.
PA Carolina has given you some wonderful resources to read. And, the members here are always ready to answer any questions you may have or see your through the rough spots. Keep coming back and you will see that you will not have to fight your battle alone.
Rich,Arsno,clnan,Mike, goldengirl48 -welcome aboard!
Kevin - Boy do you have a plate load of conditions to deal with. It is no wonder you sometimes feel depressed. Fighting your disability insurer is no piece of cake and must for sure add to your depression. I am sure you will find the support you need here and if there is anyplace where you will get understanding, it is from the members who have all dealt with the same problems you are dealing with. On top of support, there is also a wealth of knowledge and experience here to help you decide what route to take in your fight.
Hugs,
Marilyn |
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Dear Mike,
Welcome - you may have seen it by now, but we have a discussion board called Specific Disorders with lots of people discussing RSD. I would say RSD is in the top five of pain conditions that bring people here to PaidAid.
We hope you'll join in on the conversations and share your story as well.
Mine doesn't include RSD, but - in some ways pain is pain and we all have a lot in common.
Again, welcome! We're glad you found us.
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 Marilyn,
I appreciate very much your concern, THANK YOU X
I am depressed and anxious,that I know I am on Effexor 150mgs. It has helped with the anxiety, but not with the depression. I'm not sure if I like it too much as I keep getting these crazy "Brain Zaps", which is a likeness to vertigo.
I am also at a point where I don't think I can let my children down anymore than I have. I see them each day looking upon me with pity , and I can't stand it-I have always been the most careing, supportive mother, and very proud.
But the thing is; I was gven back my life with opiod drugs for aproximately 3 years. During this time I hand dug a 25 meter garden, potted plnts and herbs with the children, re-painted my house,smashed tiles from the bathroom,kept up with ALL appontments and had a very pro-active life with al my children. They are very important to me-they are my life. I have one 17 year old daughter, a 13 year old with a major heart condition and now haemophillia and a 6 year old son with Aspergers.I can't even recall how many appointments I have missed with the cardioligist, the heamophillia clinic, the ent surgeon,therapists for my kids-since I was told I am a drug addict. I have been on suboxone for 6 months now It rots my teeth I have lost all short term memory,my pan stays on a level 10 every single day and I am in just too much pain to think and too exhausted to go anywhere. Right now it is 4am and I'm too scared to sleep because I know how long it takes me to get started in the day-it just hurts too much.
I know I will find another doctor and have to start all over again -going through the whol;e process of physical therapy,relaxation techniques, steroids,interventional injections etc etc It's such a catch 22 because I can do all those things with the help of pain medicine, yet now at 44 years of ageI'm labeled a drug addict.
I really started to believe I was also. But the quality of life I hav now compared to when Iwas on pain medicine, is quite pathetic really.
When I was in Australia, I took 4 oxycontin per day fo 12 months. During that time, I had 2 episodes where I neede more. The doctor prescribed up to 6 pills per day, but after a couple of weeks I would just go back down to my usual dosage. Then when I came back toGeorgia and took 1 more pill a day for the wek we were on holidays, I was called a drug addict-not too mention failing a urine test, ecause I now know that Effexor cancause a false positive for PCP. I showed the doctor a form I printed on the internet that the company who makes effexor, had stated this as a fact, and even so-she said I should just go and have my spine fused. I do not want this surgery, I strongly believe that the percentage of patients who havecoe out of that surgery live in more excrutiating pain that they had before the surgery-but itseems I have no choice PLEASE EXCUSE ALL THE TYPOS AND MIS SPELLED WORDS, I seem tohave a technical problem with my keyboard.
Anyway, this is why I'm exhausted and feel like I have nothing left to be offerred to me.
I am not a drug addict and I;m sick of not speaking out about my best, most effective treatment so far.
I feel if I dare say anything like this to a doctor, you would think I was some sick pedophile talking dirty to a child.
Well-I'm just raving on selfishly-sorry, but THANK you for listening
xxx |
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Hello
I am so sorry to hear about all of the things you are facing. BUT! You have some rights as a human being (May not be legal rights, but stand up for them!) There are a lot of things on APF that can help. on their publications page, they have the 'patients bill of rights' downloadable pain notebooks, etc.. download and print anything that might help you. Take them to your doctor and show them.
Sometimes, it actually helps for your doctor to know that you understand pain, you can feel it, it affects your life. Using the notebook for a week or two and then taking it to your doctor will give them a wonderful heads up to what is happening in your life. It is amazing how they react when they 'see' what happens in a typical day in your life.
Good luck and have a day with less pain
D |
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Hi D,
thank you so much for replying. You don't know what a difference to my day it as been to come to this site and see your reply.
THANK UOU x
Lee (useless) |
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Dear useless (please give us another name to address you - because I don't think you're useless)
DWBH is right - educating yourself about your rights, treatment options, etc. is very important. You are not alone in this battle with pain and you can succeed at having some normalcy again - as you did before.
Talk openly and honestly with your doctor - and if you don't think you can - I think it's time to find another one. You should be able to say what you're feeling. You deserve good treatment and pain relief.
You're the customer. If you purchased something from the store that was defective or lacking in some way, you would return it. If your doctor is not helping you to discover what is going to work and help you lead a productive life, find a new one.
Yes - it's frustrating to go thru all of the tests and treatments again -- but, something I've found out the hard way -- we must keep an open mind. Treatments that didn't help before might help now that circumstances are different.
Make sure to read our Treatment Options publication - especially the section on medications. Here's a link to the publications page: 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 Caroline,
Thank you so much for being here for me today, it's just amazing what words can do to change a person. I won't go into boring details as to how I have been the past 24 hours, but I am going to begin looking for a new doctor.
I wanted to also mention that I emailed my 2 state senates, 1 of whom replied with an email. I did forward this reply on to an email contact I fons at the forum requesting what I should do with the reply and if I should follow up. I'm not very much good to anyone right now, but if there is an opportunity to keep up dialogue with these people in the hope of help, could you please let me know who I should forward this reply too?
Thank you again x
Lee (useless) |
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Hi, I agree with Carolyn don't ever call yourself useless. I am new to this board, in fact this is my first post. I was 21 when I was in a car wreck that all Drs. say I should not have lived through let alone walked away. My neck was broke and so was my back but I was released from the hospital that night undiagnosed even though they knew my front teeth had been knocked out and my jaw bone was showing in five places they put five stitches in my elbow and sent me home. Guess you figured it out no insurance.... Anyway it has been 25 years and I have been through surgeries to fuse my neck and which had to be done to save my life and legs plus 3 spinal fusions which have left me fused from T-10 to my lowest vertabrae I have more titanium in me than most airplanes. Anyway, my point being since my accident I have given birth to two beautiful children my son is going to graduate from high school this june and my daughter is a junior. I have lived in constant pain since my accident and that is the life i will live till I die, but in my time I also have helped raise step children I have a total of 8 kids and 7 grandchildren. And yes I am not allowed to run unless it is to save my life or the life of another, The surgeons from UCSF have had drs from around the world study me and help orperate on me and they all say no more can be done. BUT any one of my kids will tell you that they would not be the person they are had it not been for me and even my personal health problems have in there time frustrated and depressed me I have always done my best to do the most i could for them. Even if there where things i couldn't physically do somethings I was there emotionally there for them and have always tried to show them that all lives are worth living the best that can be. They have told me there was sometimes they wished that there was somethings that I could do with them but also understood for reasons beyond my control I could not. I guess what I am trying to say is don't cut yourself short because each of us touch lives that we don't even relize. And those close to us would not be the same without us we are never useless. |
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I guess I should introduce myself alittle more. I was 21 when I was in a car accident that broke my neck and back, which was not discovered until four months later when a chiropracter did exrays He told me he would not touch my back until I was seen by an orthopedic specialist, but did try to pop my neck. The orthopedic specialist said yes i had broke a vertebrae but i was lucky it hadn't shifted one way or the other as it would have been cutting of my spinal cord but he said my neck was still severly broken and if i even slipped in the bath tub i would die instantly or be paralyzed from the neck down. First Fusion three vertebrae in the neck. Nine years later after seeing numerous drs and being told that I had taken my nerves as far as they could be taken without severing them and they would always feel that pain and short circuit out, plus having been told I tore all of my muscles and ligaments and tendons and due to the fact they were never treated they had healed improperly they would always be messed up, I finally went to see a world renoun dr who informed me that I had not only broke the vertebrae in my lower back I had crushed it and turned it completely backwards. Next fusion that was in 93, in 1999 I blew out my disc below that several of them. Next fusion Now I was fused with not only titanium rods but cages. 2004 I broke my rods and three of the screws. Next fusion. I now am fused from T-10 down to my sacrium I have 13 screws five cages and a plate in my pelvic. I have degenerative disc disease orthoarthritis and have previously been diagnosed with fibromyalgia. No specialist in this area will even allow me in there office even for test and the Drs. in San Fransico told me after the last surgery that they could go up one more vertebrae if they absolutely had to but really there is nothing more that can be done for me. I have known since i was 21 that if i were to ever break my neck again I will die instantly due to where the fusion is it will snap the stem of my brain. i have alot of pain due to everything but I do my best to live with it. My current physician cannot believe my integrity as at this point I only take anti-inflammatory drugs and muscle relaxer to stop muscle spasms. I am so glad to find this site as yes I live with the pain but at times it does get so very old and unless you have lived it no one can understand it. Thank-you for being here. |
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OMG!
I am so sorry to hear what has happened to you.
It's just not fair that people should have to suffer as you have and for so long. I am amazed at the outlook you have, with so much pain and I want to thank you very much for showing me your enthusiasm.
Sometimes an eye opener like this is what it takes for me to just realize that there are other people out there that are alot worse off than me.
I hate feeling sory for myself-I think perhaps the depression takes over so slyly, that before I realize it, I have fallen completely down the rabbit hole. It's quite a scary position to be in. I have always been very proud and strong and have never really had any empathy towards people who get so depressed that they can give up.
It is very much bad Karma or perhaps good on my behalf.
Once I get back on my feet, I will never have anything less, but complete compassion for other people suffering depression and I will always remember that y life can be so much less pain free than others.
Thank you Farmersdaughter, I really appreciate you sharing your story with me and giving me hope.
Hugs
Lee (useless)x |
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Hi Lee (useless I will not call you) We all get depressed at times, believe me I have had my share of pity parties. I went from someone who never even had to take an asprin to someone who always hurts. I went from someone who not only rode horses but broke and trained them to someone who has to pull her leg up just to put her pants on. Let alone ever ride a horse again, not, I can't take the jarring it gives my body nor can i take the risk of falling. I don't even ride my ten speed anymore. I gave it to my older brother after I had a bad bike wreck. I told them I need a three wheeler. With a basket.. HA HA I am serious. So much for snow skiing or snowmobiling. But I am alive and I am still walking. My high school friend ended up in a work related injury and was paralyzed from the nipples down. He lived everyday in pain but to the best of his capapbilities a full life until he past away a couple of years ago. So when I got on my pity party I remembered and still remember Kelly and thank God for what I do have. I will be honest there were and sometimes still days I find myself going why did I live if this is it. But I allow those feeling for a short time and then I start to kick myself in the rear and remind myself of all the wonderful things that have happened in my life in those years and all that is still to come. I am sure your family doesn't look at you with so much pity that is your own personal interpretation of there looks. I am sure your children would not trade you for anything and love you with all there hearts and when they do look at you with sadness it is more out of there pain for not being able to help. I know my kids and family feel for me sometimes because they have seen me at my worst and watched me fight to regain as much as I can. But don't ever feel that you are useless, we may be a little slower and might not bend as well as others but everything we feel and everything we do it justified and needed. Kim |
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Lee thanks for responding and don't worry about sharing your true feeling because I may not be able to do anything but listen and share your feelings but sometimes it is so nice just to know someone understands, Hope to hear from you again. |
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Hi. I have Chronic Regional Pain Syndrome, or Reflex Sympathetic Dystrophy. I am paralyzed in my right leg with severe nerve damage, muscle wasting, and tendon shrinkage. The pain management doc wants to implant a spinal cord stimulator (Boston Scientific brand). I am scared to have any more surgery because this condition can spread with new insults to the body. Has anyone had this type of stimulator put in and what do you think of it? Anyone out there with CRPS that is also a Type 3 severity?
Corinne89 |
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Corinne89,
My name is Corinne also I can't believe you actually spell it the same way I do. I did a doubletake when I saw your post. Maybe we can get know each other a bit. I sure hope so!
Corinne |
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CAN SOME_ONE HELP CORRINE*89?
Hi Corrine89,
I just read your message about the awful situation you are in. I hope you don't mind that I copied and pasted it in a seperate header so more people willhave the opportunity to find and help you.
I am so sorry to hear all you are going through and hope someone can help you with good advice.
Hugs,
Lee (useless) |
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CAN SOME_ONE HELP CORRINE*89?
Hi Corrine89,
I just read your message about the awful situation you are in. I hope you don't mind that I copied and pasted it in a seperate header so more people willhave the opportunity to find and help you.
I am so sorry to hear all you are going through and hope someone can help you with good advice.
Hugs,
Lee (useless) |
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Woops!....sorry about the add reply boxes Corrine89---I am so computer illiterate, I have no idea how this happenned |
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I'm a 49 year old woman.I have been diagnosed with fibro for about 13 or13 years.Maybe longer,who knows.I have learned to take each new day as it comes.Don't make plans.Live for the day.Live with the pain and not for it.Smile even though you may be crying in pain on the inside.Keep on going,no matter what.Because there is someone who cares deeply about you.
Sam |
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Hi I am glad to see your attitude is alot like mine. I live everyday in pain but refuse to allow it to control me. Somedays I am the dominate force somedays it is but I never quit fighting. I am 46 and if you read former post you will see my injuries and problems. One Dr back in the 90's also thought that I have fibromyalgia two other of my family members do. But my current Dr doesn't believe in the diagnosis, when I told him what was said and he knows my medical history he said that alot of drs through that out when they really can't figure out what is going on. Anyway with alot of my problems and things I have read on it I think if it is legite I do have it. But do to all the other damage I have done I really think it would be impossible to answer that question. I just found this site the other day and have been reading some really interesting things. Just because I live with pain doesn't mean I like it after 25yrs I have just learned to except it. I was raised to see my cup half full not half empty. Anyway I hope we can talk some more because if nothing else it is nice to be able to communicate with someone that understand where you are coming from. During weak and strong moments. Plus we might even learn a thing or two. Anyway hope to correspond again |
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I'm brand new here and wanted to stop in quickly and introduce myself. I've read a few threads and quite honestly I am overwhelmed with sadness regarding my own personal physical pain and the pains in the arse caused by doctors who are afraid to help. I hope that comment doesn't get me ousted because I could really use some hope about now. Hi, I'm Donna age 54 and just celebrated my third year as a breast cancer survivor! Yayyyy  . Going thru chemo was hell on earth even tho they tell us now it's so much better now than years ago. It's was still bad (for me) anyway. My oncologist gave me all the pain meds I needed and then some but when it was over it was really over. I still suffer from painful neurothopy and lymphedema. There is nerve damage from the mastectomy. I am losing muscle in both legs and my left arm. Many times I can't stand up or hold a cup for the pain. I have had test after test documenting my journey for the past 3 years yet I am so tired of the looks and comments from doctors labeling me. I've been on the same 2 pain meds for approx 2 years and fought hard for them yet my pain mgmt doc says I'm on too much mgs per day of lyrica and what CAN happen to me if I don't decrease. I don't agree with him because I'm finally on 2 pain meds & dosages that work and if it means he may "drop" me,,so be it. I don't know if I am strong enough to keep fighting this fight but I am trying so hard. I've been a good patient..jumped thru the hoops and over enough hurdles and I know what hurts, why and what helps and what doesn't. I'm not an idiot and tired of being treated like one.. I'm sorry people if I sound negative. Not trying to..I've been sick for over a week and the pain is overwhelming me.
I am so glad I joined and looking forward to meeting you all. My hope is that I may contribute support to anyone who needs it and that I may pick up a little along the way for myself too. Happy Trails!
donna_k |
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Hi Donna-K,
I am very new here also. I just wanted to introduce myself and let you know I will be here if you ever need any support.
You must have been so scared going through all that you did, I just cannot imagine. I'm so happy that you made it through though. I saw an advertisement on TV the other day for Lyrica and then googled it. It does say there are alot of side effects, but you have to weigh out the pro's and cons I suppose. I don't kow alot at all about lyrica and was wondering if you could enlighten me as t how it helps you with your pain-is it prescribed for nerve pain?
Anyway, I just wanted to say HI and hope you are relatively well today.
Hugs
Lee |
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Hi ya'll...I am new to the site but not new to fibromyalgia. coping and dealing... has be away of life for 14 years for me. I have a wonderful family and friends...BUT the only one dealing with this illness....Love and Light |
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Hello qtcarla,
I wanted to say HI to you. I only found this site last week myself. I saw a section here related to Fibromyalgia, I bet there are alot of people you can meet.
Wen I asked my orthopeadic surgeon about fibro, he said there was no such thing. It was something someone made up for the to hard basket, but because everyone wanted an answer to their pain problems that couldn't be solved otherwise, they gave it a name. He also said that fibro was just a figment of your imagination??????????
I have seen and read alot of info on fibro. and tend not to agree with agree him, I see they even have a medicine, Lyrica-now. I just find it amazing that there are proffessional doctors out there that have such different veiws. It only adds more confusion to the patients.
I hope you ar a having a relatively pain free day today.
Hugs
Lee |
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Hi, glad to have found you. I'm 54yrs old, female living with MS. I had a brain tumor removed march of 07,and I'm still around to tell about it! I have just been diagnosed with osteoporosis, really bad in my spine. I have four children ages 21,18,17,and 11.Seperated from their dad, though we are better friends now. I am hoping to learn here and maybe make some friends |
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Hi to everyone! I am new here, but NOT new to chronic pain. I am a 39yo female with over 25 years of chronic pain. It is a LONG story, and not very interesting, IMO, so I won't bore you.
Right now I am bedridden from incredibly intense pain. The diagnoses that I have are severe Vit D deficiency, fibromyalgia, psoriatic arthritis, severe migraines, autoimmune thyroiditis, depression (duh!), anxiety and possible liver disease.
All this and I don't even smoke or drink - (no moral objection, my body just doesn't like it!) Chocolate and books are my vices.
I have been treated for the last few years by an awesome rheumatologist. He has his own chronic pain condition and is just totally amazing. I am also seeing his "buddy" around the corner to treat the Vit D deficiency and the thyroid stuff. Thyroid is not a big deal right now.
Vit D deficiency IS a big deal. I seem to be intolerant of Vit D. I quite literally throw it up. Any supplement with it (since CHILDHOOD!), milk, any food with it. I have tried them ALL. I am also allergic to the sun. I get incredibly ill - face swells, body swells, I turn a strange color of red and my skin looks like plastic wrap - really NOT my best look! So going outside doesn't work.
Anyway, that is one of my big challenges right now. Using compounded shots of Vit D we have made almost no progress. I am still waiting for lab tests though - labs were done a MONTH ago!
I also wonder if I may have primary biliary chirrhosis - my mom has it and it is passed in families. I have MANY of the symptoms but until I get these test results i won't know one way or the other. It may be the reason for the vit D deficiency.
Migraines have been with me since age 4. If anyone needs info on them I will be happy to share. I have taken almost every drug for migraines out there and tried most other therapies also.
Since my pain levels are increasing and the rheumatologist can't get anything to help I am being sent to a pain mgmt clinic. I have to tell you I am TERRIFIED.
Before I found my rheumy I saw a local doc (rheumy is 75 miles away) who told me I was just and addict who needed rehab - after spending less than 2 minutes with me. So I am rather scared to switch docs.
Anyway, I have interests other than this pain stuff. I LOVE to cross stitch, read books, cook (when I can) and I am addicted to shows like Law and Order, Criminal Minds, ER, etc....
I love my feline furbabies and my human kiddoes to death! My kids are:
17yo son with Aspergers, lives with my parents
13yo dau with chronic back and muscle pain/spasms
9yo boy with Sensory Integration Disorder
They are ALL incredibly brilliant, at the top of their classes when they want to be, funny, caring, loving, and all around great kids. I have spent many many hours researching their problems and learning all I could to help them.
I look forward to getting to know all of you in the coming days/weeks/months/???
have a great evening everyone! |
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Hello, my name is Eve from PA and very happy to find this website!
I'm 43 female, mom and grandma living with chronic pain.
Still trying to find a good dr who will listen & help =[
I'm from Bushkill, PA and finding dr's over is here is not easy. |
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I've spent most of last week down with a migraine and come in to see so many new faces -- welcome!!!!!
We're so glad to have all of you and hope that you will jump in and participate in all of the great discussions here and also join us for chats in the chat room.
We're so glad to have so many new painiacs (something we like to call ourselves) join the group!!!
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 Caroline as you know I have been in the chat room and talked with you and others. This is a really great place, I am enjoying meeting and talking with others that walk the same path as I do in one way or another. But I have asked if there was somewhere on this site where if we choose to tell our story and illness we can. I have introduced myself and read both the introduction sites but cannot find some people on the board that I have talked to in the chat room and I hate to ask everyone what is wrong with them plus hate having to explain what my problem is over and over. It would be really nice if this site had a site where we could explain it once at least the basics and add any other info we may want for public info. such as e-mail info. I don't know if this site is able to do that or not but sometimes it is really nice and can save time for someone wanting to know with out working through all the info just to find out someone you have been chatting with isn't on the most or last introduce yourself board. I hate having to say over and over again my problems because it sounds as if I am just looking for sympathy and to say hey I am worse than you are. We all are hear I think for the same reason. Friendship and understanding. Many people are so much worse off than I have ever thought of being and I don't like to sound like an idiot asking what is your problem nor look like I am looking for sympathy because I just might have just a little more wrong than you do. Not that I feel that way in any shape or form. It is just a thought that the pain aid might think about. I know the melanoma internation foundation has a site like that which is great even though we all know we are fighting the same stupid disease be it as a mm patient or care giver we are all in the same boat. Hear it is a little more confusing because pain and disability come from so many different things. Anyway I am so very glad I found this site and all of the wonderful people I am meeting. Thank-you for being here and caring enough to offer a site like this. |
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Hi Caroline as you know I have been in the chat room and talked with you and others. This is a really great place, I am enjoying meeting and talking with others that walk the same path as I do in one way or another. But I have asked if there was somewhere on this site where if we choose to tell our story and illness we can. I have introduced myself and read both the introduction sites but cannot find some people on the board that I have talked to in the chat room and I hate to ask everyone what is wrong with them plus hate having to explain what my problem is over and over. It would be really nice if this site had a site where we could explain it once at least the basics and add any other info we may want for public info. such as e-mail info. I don't know if this site is able to do that or not but sometimes it is really nice and can save time for someone wanting to know with out working through all the info just to find out someone you have been chatting with isn't on the most or last introduce yourself board. I hate having to say over and over again my problems because it sounds as if I am just looking for sympathy and to say hey I am worse than you are. We all are hear I think for the same reason. Friendship and understanding. Many people are so much worse off than I have ever thought of being and I don't like to sound like an idiot asking what is your problem nor look like I am looking for sympathy because I just might have just a little more wrong than you do. Not that I feel that way in any shape or form. It is just a thought that the pain aid might think about. I know the melanoma internation foundation has a site like that which is great even though we all know we are fighting the same stupid disease be it as a mm patient or care giver we are all in the same boat. Hear it is a little more confusing because pain and disability come from so many different things. Anyway I am so very glad I found this site and all of the wonderful people I am meeting. Thank-you for being here and caring enough to offer a site like this. |
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This seems as good as any for what you are asking for Farmersdaughter. I haven't done it yet as I have told it elsewhere many times. (Usually under diagnosis and treatment)
We all have a variety of ills and need to have people understand what is affecting us and how we 'deal' with it.
So share the story. Get the caring and understanding that I have found and hopefully, it will help knowing you aren't alone. |
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Hi, my name is Corinne. About 7 years ago I feel in the shower and injured my low back. I've had about every treatment under the sun and 4 surgeries since then. My surgeon tells me I'm looking at at least two more fusions in the near future. Two of them were fusions at L4-5 and L5-S1. I have drop foot on one side, nerve damage and pain on both sides, pain from low back into both legs. I have loss of feeling in my low back, both legs, and one foot. I have been on the Fentanyl (aka duragesic) patch for the last 4 years. Recently my family doctor went on maternity leave. The so called doctor that filled in for her decided he didn't like my treatment. He took away all breakthrough meds, sleeping meds, muscle relaxers and started tapering my patch with the goal of me getting no pain meds at all. I asked to be sent to a specific pain clinic and he refused. I was required to go to the pain doctor affiliated with that medical group which was a joke and I hated the guy. I filed a complaint agaist the fill in doctor and was kicked out of the clinic for supposedly being rude to one of the office staff. I have not been able to find another family doctor since because of what the jerk put in my medical record. I can't get into a pain specialist or clinic without a referral and a regular doctor. I will be changing my very last patch tomorrow and have no way to taper the dose. I'll be going from 125mcg to nothing. I'm so sick of being treated like a drug seeker and having to bow down to doctors to get any help. The guy who kicked me out of the clinic put in my chart that I refused to try Methadone because I didn't feel like it. It was documented in my chart that I am allergic to it. He didn't care. I wasn't allowed to express an opinion, ask questions or refuse treatment. He said if I refused I would get no more pain meds. Lot of good it did me. I don't know what to do now. My pain is completely out of control and in 72 hours I get to go cold turkey and hope that there is no damage done other than wanting to die from pain. I'm sure someone will ask if my surgeon can refer me and the answer is no he will not. I was told that his office only deals with surgery and right after. He doesn't refer for pain contorl at all. Sorry for the long post. |
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I hope you documented all of that. I would get a copy of my records and take it to the state medical board. If he stated that in your records and there is previous indications of allergic reactions, that should be enough, I would think. I would call my regular doctor when he or she got back. Speak to them and only that person. Ya never know, she might just speak up on your behalf.
Luckily my doctor works in a clinic and many of the other doctors respect him and would be hesitant to change anything he did. There are a couple I wouldn't see on a bet, but the rest are wonderful.
Oh yeah.. APF has a place for resource to look for someone else I am looking for it right now. Found it.. Here is the link
http://www.painfoundation.org/ResourceLocator.asp
Good luck with this. |
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I tried to talk to me doctor when she got back the office manager refused to allow me to speak to her and would not give her a message. I have no other way to contact her. Yes it is documented that I'm allergic to methadone but so far the doctors I've seen take a look at what he read and go no further even when I point out where the information is. I've been told since my behavior was inappropriate (they claim I was rude to the office staff but I never was) that obviously I'm drug seeking. I've called about 50 offices so far and had an appointment with about 10 who have all turned me down as soon as they read his coments. My word against his and guess who wins. I'm 34 years old and my surgeon said I will never be able to function without pain management and I'll need at least two more surgeries as well. It doesn't make me look forward to the rest of my life of fighting doctors just to have a life. |
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oops I was also going to say I did turn him in to the state medical board. They said that since he was responsible for the prescriptions he writes that he could change my medication. They also said that they can't have the records from him removed from my file. I was also told that the clinic has the right to refuse service as long as they give 30 day notice which they did. They said they would keep the report so if someone else turned him in they might possibly be able to do something. I'm not holding my breath. I also consulted an attorney to see if there was anything I could do about them kicking me out for filing a complaint. He said I would have to find a doctor willing to testify that he was in the wrong and that's very hard to do and very expensive. I've discovered that as far as the doctors are concerned pain control is a privledge not a right. |
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Wow.. That is a tough place to be. All I can say is keep trying. I know my records said I was a woman just needing attention, etc. etc. etc... I have had a fusion in my cervial (neck) area, two failed laminectomies in my lumbar region and now have arachnoiditis as well as arthritis, GERD, and a host of other problems including sciatic pain and pain in my arms and hands.
I finally found a doctor that is part of my medical team. I was up front with him about needing relief. I didn't care how I got it as long as I got it. (And take it from me, I Have tried almost everything now)
We have tried PT, warm water PT, pressure point whatchamacallit, Massage, opiods, and more. I finally got the SCS and can now try mild exercise, walking elliptical, etc.. The SCS for me was a life saver. I still get knots in my back and have the pain from my upper back. I get trigger point injections while under 'twilight sleep' as well as injections in the neck.
I am doing much better than a lot of my friends here, but without them, I would focus on my pain instead of trying to help others.
Good luck |
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Hello. I have been experiencing daily migraines for the past decade and was diagnosed with occipital neuralgia last year. |
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Welcome! I hope you can find someone here who has had them and has found some relief.
Good luck |
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Hi!
My name is Cassie and I am 21 year old with chronic hip pain. Due to a GI condition, while in high school I had a full abdominal CATscan, which came back with highly unexpected results- they had found a bone tumor in my right femur, near the ball of the hip which had left the top 4.5" of the bone hollow- in places, the remaining bone was only as thick as a sheet of paper. There were no signs that this tumor existed except for the xrays, CATscan and MRIs they did. I had no pain, no limp, nothing.
I had a chemical bone graft in Aug '04 with success and thankfully, no post-op pain at all, which rather floored my orthopeadic oncologist (they had just drilled two big holes through my leg). Six weeks later (Sept 4th, 2004) I fell down one stair, still on crutches from the last surgery, and shattered my femur where the graft hadn't hardened yet. My femur was set, pinned, and plated leaving with a 4inch plate, 4 screws and two 3 inch pins. The doctors had to cut my muscles and nerves for nearly 10", however, to put the bone togther- the muscles were to firm to retract as much as was needed, as I had been a dancer. The next summer, I had one pinned removed, then in the summer of '07 a second bone graft when the tumor spot had begun to grow again. (Thankfully all of my tumors have been benign.)
Through all of the procedures I began to experience more and more pain. Finally, by the spring of '08 I was taking 2-3 vicodine a day to get through the long classes required by my college program. My doctors put me on Ultram ER 200mg which allowed me only take 2.5mg of vicodine a day and that was only to sleep. In December, they moved my dose up to 300 mg which nearly stopped my breathing- turns out my "asthma" which I had had since shortly after starting the Ultram ER was a side effect of the drug.
I have been weaning off the Ultram over the last 3 months and took my last dose of 100mgs this morning. I have become more reliant on vicodine during the weaning process.
As an effort to treat the pain, I have undergone two long term session of PT, 5 months of Graston Therapy (like deep tissue massage, but with a steel bar to help break down scar tissue), suction cup therapy (to pull apart scar tissue and allow healing), and a form of accupuncture where the pins are run into the bone, then STIM is run the pins. The Graston helped relieve the nerve pain in the location of my incisions and the accupuncture can buy me 2-5 good days (no vicodine during the day, but lots of otc's).
My orthopeadic oncologist is baffled as to why I have such long term pain, which is apperently uncommon with the form of tumors I've had, but since my healing hasn't followed normal patterns, I confuse him in general. Thankfully, my docs have yet to question the need for me to be provided with the vicodine I need and they will call in a bottle of 80 every 2-5 months, as needed. I think my willingness to try various treatment types to avoid pills has helped with my getting the pills when I truly need them.
So, thats my pain story in a nut shell. Other than that, I'm a crazy college student who watches too much TV, spends entirely too much time on the computer, and loves her power tools a bit to much (yes, I have my own power tools- I love my major!). Oh, and my yarn is trying to kill me- it keeps threatening to take over and smother me. And who said knitting wasn't a dangerous hobby? XD |
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Im not sure why my name won't appear on that post, but I'm the poster on this intro. |
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I am not sure if my last email was received. I don't want to repeat myself but I would like to get some help. I need to find a doctor in this area who is willing to prescribe narcotics to relieve the chronic pain I live with. I was in a devastating auto accident in 1991, I fractured about 24 bones on the rt. side of my body. I believe this is the cause of the pain. I cannot find one doctor in this area who is willing to help me. Any suggestions?? shenri |
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Hi. My name is Sandie, (backboned 1). I have been a member of this site for several years but I don't think I ever introduced myself!!! Can you imagine that????? Anyway, I was diagnosed with arachnoiditis of the lumbar spine in 2004 and fibromyalgia in 2005. Then just a few months ago I was diagnosed with COPD and now use oxygen daily. All of this is very frustrating. I can no longer work. I was a radiologic technologist for 30+ years, followed by an instructor of radiologic technology at a local university for 5 years. I recently began babysitting my 2 grandchildren while my daughter-in-law works part time during the week. I love having this time to spend with my grandchildren. But I hate feeling so sick all the time. Just communicating with others on this site helps me very much. I thank you for being here for all of us. |
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I know the feeling about not introducing yourself. Good to 'know' something about you |
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Hi Shenri,
Fist off, a word of caution. Don't ever go to a doctor asking for opiods. That is a bright red flag to them that you are a 'drug seeker' even though it isn't true. You should however, ask for relief and be willing to try anything that the doctor(s) suggest. Once you build a trusting relationship with a doctor, you can ask about different treatments,
Good Luck! |
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Hi, I am new here. I might be the one who "pouffed into cyperspace". My computer locked up as I was trying to submit my message and I had to force quit.
Glad to find you. Am a Home Health R.N. by profession, have been an R.N. for 23+ years. I have 3 grown children, 5 grandchildren and one great grandchild. My hobbies are oil painting, classical piano and any type of needlework, with a favorite being filet crochet.
I have had moderate to severe pain across my left shoulder blade, radiating down my left arm, since 2/22/09. Just this week I had an EMG/NCS that confirmed a C5 nerve root compression. It took so long to get in to see a doctor and to get diagnostics done, that I really did not think I would be able to continue on. Yes, suicide was a thought. I still continue to have severe pain, but am taking muscle relaxants that help for about 2 - 2-1/2 hours - they are to be taken 3 times a day. At least now the neurosurgeon can be sure that I am not a drug seeker.
Hoping to have definitive resolution of the problem very soon. Don't know that I care to go the physical therapy route, because this is very expensive and would eat up a lot of time, especially if it is unsuccessful. At this time I am unable to work full time, since the pain is worsened (if that is possible) when I drive my car.
Again glad to meet you.
Isabelle |
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Hey and welcome to this place. painaid has helped me more than once. hope it can do the same for you. nice people here |
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wow, im glad i found this site. ill try to keep this short. i had spinal stenosis, disc degeneration, bone spurs, bulging disc, and scoliosis. had laminectomy in feb, 2009. have no leg pain but nothing was done to address the disc degeneration. now i told that there is nothing more that can be done, and since i am a fighter, i refuse to believe that. i will someday take my grandson to the park!! thank you this site and welcoming me to this fighting group of survivors!!! |
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you will like it here. many people are so supportive and nice. enjoy what you can. they seem to always be here. |
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Welcome boos gma! We're glad you found us and hope to see lots of you around the boards and in chats! We've come to the right place.
~Mary Anne
APF/PainAid Team |
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The initial injury occurred on March 12th, 1993. I slipped while walking up an incline of a ditch carrying a small child which I had removed from an overturned car. Pain consisted of right buttocks and leg.
1) April 1993 – physician name edited per PainAid guidelines Southwest Memorial performed laminectomy/ discectomy at L5/S1 level. June 1993, I was sent for work hardening and instructed to use a seated leg press machine with a 100 lbs setting. Felt a pop in low back and pain immediately returned. physician name edited per PainAid guidelines advised that the pain was in my head and needed to be addressed by pain management. In late 1993 to early 1994 I requested a change in treating physicians. I saw physician name edited per PainAid guidelines who diagnosed me as having failed laminectomy/discectomy and performed an anterior / posterior fusion with donor bone and instrumentation. The fusion did not take and 6 months later physician name edited per PainAid guidelines performed another posterior fusion using my own bone. The second fusion was successful and pain diminished to an easily tolerable level with only anti-inflammatory medications being used.
1) 2004 - Pain returned on opposite side. physician name edited per PainAid guidelines no longer taking workers compensation cases. Saw physician name edited per PainAid guidelines who diagnosed me with a ruptured disc at the L4/L5 level. physician name edited per PainAid guidelines performed a laminectomy discectomy and felt the need to remove all previously installed hardware. Pain in legs subsided for a period of time but pain in both hips remained.
1) 2007 – Re-contacted physician name edited per PainAid guidelines regarding some severe pain issues and was advised that he no longer accepted workers compensation patients. I requested another change in treating physicians which was granted.
1) Located physician name edited per PainAid guidelines who diagnosed me with a failed back at the L/4/L5 level and performed a posterior fusion at that level. Pain subsided for approximately 30 days before returning. physician name edited per PainAid guidelines advised that that was nothing more he could do. I inquired as to a pain pump or something of that nature and physician name edited per PainAid guidelines stated that he would not approve a pain pump but that he would refer me to a friend of his named physician name edited per PainAid guidelines who was a pain management doctor about a spinal stimulator. physician name edited per PainAid guidelines also referred to all other pain management physicians as drug dealers with medical degrees.
1) I saw physician name edited per PainAid guidelines who placed me on Neurontin, Cymbalta and Lyrica separately combined with Tramadol which failed to work very well. physician name edited per PainAid guidelines also suggested the possible use of a spinal cord stimulator. I asked physician name edited per PainAid guidelinesabout the use of a pain pump if the stimulator did not work well. I was advised by physician name edited per PainAid guidelines did not use pain pumps. physician name edited per PainAid guidelines advised that a trial could be done with the stimulator but to obtain the implanted version of the stimulator, I would have to have a 70% reduction in pain. The stimulator trial was performed and I received approximately 40% pain relief with improvement on mobility. The greatest issue was that I could not sleep with the trial stimulator on and had to resort to using pain medications to get any sleep. physician name edited per PainAid guidelines and stimulator representatives advised that the stimulator leads migrated causing it not to be effective. At the end of the trial, I advised physician name edited per PainAid guidelines of my results and he told me that he could make sure the leads did not migrate by stitching them in place but that he would have to have physician name edited per PainAid guidelines perform a laminotomy to allow room for the paddle leads. I told physician name edited per PainAid guidelines I had serious concerns about having another surgery and that my luck with them has not been good. physician name edited per PainAid guidelines along with Medtronic representatives advised that I could go ahead and try the implanted version of the stimulator for 3 months and if I did not like it, he would remove it. I reluctantly agreed. I developed concerns for several the following reasons:
#1 I did not get the 70% pain relief as originally stated by physician name edited per PainAid guidelines to make the implanted stimulator an option.
#2 I was contacted daily by stimulator reps with sales pitches for the implant version.
#3 I developed a hypertension problem that physician name edited per PainAid guidelines did not seem to be worried about.
#4 Finally, physician name edited per PainAid guidelines advised that all medication would be stopped after placement of the implant in spite of the trial’s inability to relieve 70 % of the pain. When I reminded him that I was unable to sleep with the trial stimulator on, he shrugged his shoulders.
1) After seeing my family physician for my hypertension, I was put on blood pressure medication and advised that I was not to have any surgical procedures until my blood pressure was controlled and that I should seek a 2nd opinion for the diagnosis and treatment.
1) My workers comp insurance adjuster with Texas Municipal League quickly agreed to pay for a second opinion.
8) After developing some numbness and pain in my left arm and hand, my family doctor suggested and MRI to determine the cause. The MRI suggested that I had disc herniations at several levels. physician name edited per PainAid guidelinesreferred me to physician name edited per PainAid guidelines a Neurologist in Lake Jackson for testing. Test indicated several problems requiring surgery. physician name edited per PainAid guidelines suggested the use of a pain patch until disc replacement was approved through FDA.
9) physician name edited per PainAid guidelines referred me to physician name edited per PainAid guidelines a Neurosurgeon on Houston. physician name edited per PainAid guidelines ordered a myelogram on my neck which indicated 3 areas of concern. physician name edited per PainAid guidelines felt that most of the issues could be dealt with by performing laminotomies and cleaning foraminal openings. On July 16th,2008 the corrective procedures were performed. While doing so, physician name edited per PainAid guidelines found a suspicious darkened area on my left shoulder. Consent was given by my wife for he and his surgical team to address the suspicious area with surgical intervention. The area was thought to be cancerous in nature.
Although surgical intervention has taken place regarding neck and arm pain, considerable pain is still present in my neck, shoulders and arm.
Presently, I take 400 mg of Tramadol every day. The Tramadol does little for the pain, however the pain is crippling without it.
I am looking for a long term method such as a pain patch or pain pump for pain management for residual pain from all of the surgeries I have had on my lumbar region.
Without some type of intervention very soon, I will most likely seek disability retirement from work.
Low Back Post Surgical symptoms include:
1) Pain and weakness in my left hip and leg all the way to my foot.
2) Pain in right hip and leg to the knee.
3)Low back pain
4)Pain on both sides of the buttocks
Sorry for burning so much space but I know many of you probably have stories like this. I encourage everyone to write it all down.
Is this some kind of life or what?
Updated by PA_Fun on 15/07/2009 08:09 |
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Welcome to PainAid!
If you're only on tramadol now, no pain doc is going to take you straight to the pain patch or a pain pump. The patch is reserved for people whos pain is only helped by opiates and have a history with other long acting opiates. Also, its incredibly strong, so its typically reserved for those for whom the other options arent working to well. It's also very expensive, so most insurance companies make you step up to it before they'll cover it at all.
The pain pump is typically for people who are dependant upon opiate pain relievers and will be for the rest of their life. It is done because less medication is required to achieve the same pain reducing effect, which means less side effects, such as liver damage. Most people who get a pump have been on opiates such as morephine for at least 5-10 years already. Even when opiate dependant, not all patients qualify for a pump.
There are, however, other long acting options that are less instense that could very well help you. Tramadol is considered a bit of a weaker pain med, considering the spectrum. There are also long acting versions of tramadol that are easier on the body. I personally take a long acting version known as Ryzolt. Ultram ER is another version of long acting tramadol. Both cap out at 300mg, but many pain docs then add in a second med in a weak dosage to help cover the pain thats left or allow you to take a few short acting tramadol throughout the day.
A pain management doc could help you immensly and would be qualified to help you find the right meds to control your pain so you may live a decent life. Your pain likely wont be cured and no pain doc is going to claim to help you get to a 0 on the pain scale. There are many other meds out there that could help, so dont give up hope.
Good luck with everything. |
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Can Anybody Help Me!!!! I was diagnosed with rsd about 4 years ago. It started in my left hand and arm after hospital iv and i couldn't move it for nine months and almost lost my arm. I was diagnosed and had some physical therapy and was able to move my hand again, but the pain never left. I was able to manage and returned to school to finish high school (two 1/2 years in one to graduate) get married and move to chicago for culinary school at the Art institute. The problem is that in october of 2008 the pain got so bad that i guess my flipped and i began to have uncontrolable muscle movements all over traveled all over and coulnt really walk for awhile. People and doctors around began to think i was crazy put me on crazy pills that appearantly i tried to kill myself which i dont remember and would never try to do that. To make it short been really trying to hide from everybody about the pain even my husband. It has gotten alittle better but im afraid that it might come back and worse. Idont wan t this to ruin my marriage cuz my husband believes whatever the doctors say. he has never really been sick his whole life. i love him but he just doesn't understand. I think he thinks its all in my head from the last doctor. (in very short!!!)
CAN YOU PLEASE HELP ME !!!!!!!!
EMAIL ME AT: lhsgigglesrose@aim.com
THANKS
REBECCA MCNEES (22 YRS OLD)
lhsgigglesrose |
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Hi and welcome to PainAid.
1. You are NOT crazy
2. Pain is very real no matter what the diagnosis
3. Depression is part of the pain cycle and you will probably need to be treated for it.
4. Reaching out to others who suffer, are non-judgemental, and accept you for who you are, not what you suffer can be a true boost.
5. I found, here, another family. People who truly understand and care. I have only been here a few short months, but I firmly believe all of the things above.
Your life doesn't have to go to 'heck' in a handbasket. Only you can let it go that route. There are others here with RSD and they are surviving, are even humorous sometimes. It is something that won't go away, but for the most part, it seems it can be controlled somewhat.
When you see a physician, ask for relief. (That is what someone said here before) Be willing to jump through all the hoops they will put you through and eventually, you will get help.
Good luck! |
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HELLO MY NAME IS JOHN AND I AM 33 YEARS OLD RECOVERING FROM STAGE 3 MILIGNANT MELANOMA. THE CRONIC PAIN I HAVE IS NOT FROM THE CANCER, BUT THE SURGERY TO REMOVE IT.
JOHNSHANNON |
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Welcome here, John.. The support and friendship is here for the taking |
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Hello everyone. I am hoping to meet some people who are in the same situation I am in. I was in a mva two years ago, have had several hip surgeries, I need back surgery, and etc... I am hoping to be able to maybe give and get some advice about my situation...
Thanks to all that help |
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Hello Always and welcome to PainAid!,
You will find many people who hurt due to various reasons. Many of us suffer back pain from many different items. MVA's played a part in mine.
Please go through the boards, if you find a topic that works for you, by all means, jump in.
We have chats every day through the week (M-F) at 11:00 AM east as well as a chat on Monday evening @ 9PM Eastern and a Wed. Night chat at 7 PM eastern.
Please make yourself at home on the boards as well as the chats. You will find a lot of caring individuals who will not judge you..
PA_Fun
APF/PainAid Team
www.painfoundation.org
A United Voice of Hope and Power Over Pain
The views expressed here in may not represent the views of the american pain foundation. |
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Greetings,
My name is Caroline, I am 21, and I have had a chronic headache (that's right, just 1) since March 2004. Happily, it is well under control. The main issue right now is endometriosis. I was diagnosed by laparoscopy in November 2005. In May 2008 I began a 24-month course of Lupron depot to treat pain and endo growth. My main pain complaint is lower groin pain that radiates straight down my thighs to my knees. I have been taking pain meds since June 2008 for the pain, and it comes and goes depending on what's going on.
So it's been over a year and I feel like I can't get a handle on managing my pain AND my hormone replacement. Unfortunately, I can't go without (which would put my sanity and my bones at risk).
I am sick to death of taking more medications, which don't work as well as I would like. I recently had an ankle injury for which I did physical therapy, which included electrical stimulation with a TENS unit. Since then, I have started researching the effectiveness of nerve stimulation on nerve pain, especially those related to endometriosis. So that's where I am!
Thanks for listening. |
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Hello Caroline and welcome to PainAid.
You will find others here who suffer the same malady. Many times they have had successful treatments as well as some not so successful.
Make yourself at home here.. We do And remember, we have chats every weekday boards, of course, are open 24/7.
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)
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5pm (AKST)
Wenesday Evening Chat
7pm (EST)
6pm (CST)
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4pm (PST)
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PA_Fun
APF/PainAid Team
www.painfoundation.org
A United Voice of Hope and Power Over Pain
The views expressed here in may not represent the views of the american pain foundation. |
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Hi and welcome to pain aid! Being at pain at our young age (I'm 22) bites, but hey, if it's our life, we might as well find the best way to deal with it.
I have heard great things about tens usage for cramping and the like and have used my tens unit myself during my period to relief cramping. It worked quite well. I know nothing about how it works for endometriosis, but I would ask about it and see if you can't get a doc to perscibe you a tens unit. There are portable ones- mine is about the size of 2 old school pagers stuck together- that can be worn all day if needed. They are only available with a perscsirption in the Us, though, so don't be afraid to ask!
Good luck! |
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Hello to all and thank you for these discussion boards and the chat rooms.
My name is Rhia. I have been a Chronic Pain and Chronic Illness patient now for 20 plus years of my life. Like many, I have been from one doctor to the other, one diagnosis after the other, so many medications that did not work, a few that do, side effects of those medications, and all of you probably know my story sounds all to familiar. I suffer from Lupus, Migraines that have plagued me since I was 17 (I am now 49). I have had Chronic Pain Issues due to the migraines, due to degeneration joint disease, in which I have undergone numerous joint surgeries, including two total knee replacements, after several arthroscopic surgeries. My list of tests include many MRI's, CT's, more blood work than is imaginable, especially since being diagnosed with Lupus/Mixed Connective Tissue Disease/Sjogren's/Raynaud's. I am a writer and poet as far as what I feel my "life's work" is. I am now totally disabled, and fought for a little over three years to finally get my complete disability. I was born and raised in a small town in TX, just outside of Dallas. I have two grown children, along with 2 grandson's 3 and 8 weeks, and a step-granddaughter who is 11. My writing and poetry reflect much of the pain, the heart ache, the frustration, the feelings of hopelessness, yet also the feelings of hope and faith. I feel faith has been one of the most sustaining things in my life. I look forward to meeting all of you through these discussions. I also am an avid activist for pain research, new medications, any type of state or government legislation to help us, our caretakers, families and friends. I have been following the American Pain Foundation now for several years. I am also a very active voice trying to stamp out Domestic Violence. I am married, and have two "fur kids". I have a Pug named Tazz, and our latest family addition is a 8 week old "Chi-Weenie", Bubba Gump. My hobbies include doing web design, cooking, reading, having several pro-active groups on line, of course my writing and poetry, playing the drums, writing music with my husband, Jim, gardening, and one of my main loves other than my writing, is all of the hours I spend researching my own illnesses, along with anything else to do with the medical field.
Thanks again for these discussion boards, and also a HUGE THANK YOU to the American Pain Foundation and all of your hard work to help each of us try to deal, manage, understand, and cope with our Chronic Pain and Illness issues.
ravishingrhia |
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Hey Rhia, welcome to Painaid. Pretty cool site and everyone is real nice.
I am not a poet or a writer even though I like reading both of those.
Hope you put them in.. (had to go check) off topics writer's board. Lot of neat stuff in there. |
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hi my name is regina i am in so much every day i just dont know how to cope somtimes my daughter is 16 years old and disabled and in an electric wheel chair i have had neck surgery and it did not help i got hurt om the job in 1999 and for years i have been trying to deal with the pain and i have been so depressed for a while now i am on lypica but it is not helping i just dont know what will help doctors wont help me because i dont have insurance are any money please help me so i can help my daughter thank you vey much regina |
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Hi Regina and welcome! My heart goes out to you and your daughter. It sounds like you have a lot to struggle with and I wish I could be of more help, but I did want you to know that we are here for you and that we hope to see lots more of you on the boards and in chats. All of us at APF/PainAid understand your pain and your struggles. I will keep a good thought for you! See you around.
~Mary Anne
APF/PainAid Team |
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