Hi! New to the site and looking for help in coping w/ chronic daily migraines that are severly undertreated. I live in constant pain and am becoming very bitter and frustrated. Any help will be appreciated. Thanks.
mountaingirl |
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Welcome Mountain Girl,
I'm glad that you found us here at PainAid. I have chronic migraines as well and I know how debilitating they can be.
We have a lot on info here on this site, but also lots of support from people who truly understand. If you haven't already done so, you may want to post a message in the Chronic Pain section where it will get more views and I'm sure you'll get lots of feedback.
Living with chronic pain of any type poses many of the same challenges, so you will also here from people who don't have migraines, but do have issue from back problems, RSD, etc.
You will also want to check out our daily chats. Our Morning Coffee Chat takes place at 11am EST Monday-Saturday and we all get to know each other better there as well.
Feel free to e-mail me if you have any questions or are having trouble finding anything.
Again, welcome!
PA_Caroline
APF/PainAid
Board Team Leader |
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Welcome aboard, mountain girl!
This may seem like the most obvious thing (not to mention a ridiculous question), but...do you live in or near the mountains? |
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hi im new here. trying to figure out how to get a login... wont let me do it with the login i used to join the site. any help? |
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Take a look at the new post about a login in if you want to know how to get a log in. Regarding headaches, I feel for you.....there is such a variety of headaches....My Dad who was an avid outdoorsman and fisherman was eventually brought down by headaches....Keep us posted and I look forward to getting to know everyone even better  Best, Iris |
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My suggestion for another board maybe in Diagnosis and Treatment, is to start up a board where those of us who have arthritic conditions can have a place to discuss them instead of just the regular chronic pain board.
Kristy |
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Thanks for the suggestion - I've posted a topic in diagnosis & treatment |
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i am so glad to have found this forum!!!...i recently had a pain pump put in me and would like to share info and the humor that can sneak in , and would be willing to share my experience to those who are looking for another method to managing chronic intractable pain...hope to hear back from anyone , re:pain--it helps to share to relieve the pain!!....Jeff12step@yahoo.com or jeffm |
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Jeff,
Welcome to PainAid. I hope that you'll check out our other discussion boards as you will get a higher visibility for your posts.
We actually have a specific section for humor on the Off Topics Board.
Welcome!
PA_Caroline
Board Team Leader |
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BE CAREFUL WITH IMPLANTED INTRATHECAL PUMPS! Mine became infected, idiotic doctors did not know how to take MRIs with the pump there (and did not even call the MD who implanted it nor the manufacturer), and I was left PARAPLEGIC and INCONTINENT of urine and feces.
To add insult to injury, after 30 days in the hospital (not coincidentally the duration of my stay for which Medicare would pay without recertiification), I was involuntarily loaded into the bus of an ambulance transport service - no medics nor EMTs aboard - brought home (alone) and plopped on my bed in a soaking wet diaper, all because my official diagnosis was that I was a "SOCIOPATHIC DRUG ABUSER malingering to get drugs and attention."
And no, I did not sue, because I found the right lawyer too late and blew the statute of limitations due to depression when that lawyer couldn't take my case and returned my file with only days to spare....
The good news is that I rehabbed myself while living in a hotel room for 4 months after a major hurricane took my house (I figured someone would hear me scream if I went down), and can now walk a little. Still collect my P in a bag, however.
But I survived, albeit with a crummy quality of life.
painfullyyours
painfullyyours
painfullyyours
painfullyyours
painfullyyours |
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Hi my name is Wendy and I am new here starting tonight. I am looking for message boards for Fibromyalgia. Thanks for help. Look forward to meeting and chatting with everyone. |
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Wendy,
Welcome! I'm glad that you found us here! Many of us here suffer from fibromyalgia.
You will find discussions on this topic on the Chronic Pain, Diagnosis & Treatment and other boards as well.
Please let me know if you have any questions.
Again, Welcome to PainAid!
PA_Caroline
Board Team Leader |
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I think it might be interesting to have a chat on "false positives" with opioid tests as some individuals on the boards here are talking about what their experiences have been. Having to live with chronic pain is bad enough.....to have a fallable test stop all hope of ever being able to get sustained relief must be awful. I read with interest what one pain clinic does when this occurs....and also interest with the test on hair...maybe Steve might be interested in helping out with this chat? Just an idea. Thanks, Iris |
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Hi Iris,
Thanks for the suggestion. We appreciate it!
PA Moez
APF/Pain Aid
Chat Host Team Leader |
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I was wondering if it would be possible to ask, Dr. Borrie if he would be interested in having a Expert Chat with us. I know I have had great success with his CD.
Thanks
Teresa |
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Hi Nam,
That would be something we would have to look into to. Thanks for the suggestion. I know this suggestion was brought up before.
PA Moez
APF/Pain Aid
Chat Host Team Leader |
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Hello - I'm looking for information on removal of surgical hardware. I have rods and fusion instrumentation in the cervical discs 3-7. Want them out! |
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Hi maggielou, welcome to PainAid. You are having problems with your cervical fusion and hardware issues, it must be a really rough go for you...I'm sure some of us here can offer some help that have had similar problems. At PainAid you can tour the boards and put your concerns and questions to the members. We have a wealth of resources for you to draw from. The Chronic Pain or Diagnosis and Treatment areas would be a great place to start. We're all sufferers of chronic pain for one reason or another and we're here to support you.
Again, welcome to PainAid!
PA Gootes
APF Pain Aid Board Monitor
APF Chat Room Monitor
http://painaid.painfoundation.org
A United Voice of Hope and Power over Pain
Always Wag Your Tail! |
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Thank you all so much! I really appreciate somewhere to go to get information! |
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Hi maggilou, How long have you had your hardware in?. Usually, it takes about a year or so for the fusion of bone material to be complete enough to remove the hardware. You should discuss this with the surgeon that did your fusion surgury. I know some surgeons do not remove the hardware, but I, myself, have had 2 fusions and had the hardware from my first fusion removed 12 months after the surgury was completed.
PA_Racer
APF/Pain Aid Board Monitor/RN Nurse Consultant
All Information for Educational use only
pa_racer@hotmail.com
Http://painaid.painfoundation.org
A United Voice of Hope and Power over Pain
"Pain is No Evil Unless it Conquers Us," George Elliot
"The Views or Opinion(s) contained herein do not necessarily
represent those of Pain Aid or the American Pain Foundation." |
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A question to the staff. I read in the last Pain Community Bulletin about the Spotlight on Cancer and was wondering if there were going to be any plans to put up a messageboard for those that are undergoing treatment for cancer or something for family members of those that are dealing with a cancer diagnosis and about to start treatment?
I would like to suggest one be considered for those of us who have family that are dealing with family that got a cancer diagnosis, etc.
One of my family members was diagnosed with breast cancer in the past week.
Kristy |
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The Spotlight on Cancer has been going for a while now.
Our space is limited, so we're considering our options right now. You should see some more info on this soon |
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Caroline ,
Could we have a thread any way but maybe under Personal and Family Issues instead of a full separate board like they have RSD and some other things?
Thanks for the heads up I'll be on the look out.
Kristy |
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Keep an eye out. We're doing some revamping and I'll keep you posted. |
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Hello all, and Pa Fun,
Snuck away from work for 5 minutes, to see if the "Small Business Owners' self employed topic/ forum? was still around. Unfortunatlly, I had no time to join in the conversations, in recent months. but did see it finally pop back up after one board revamp.
Hopeing to make a bit more time, to share what little I could with other small business owners paying there own insurance, or having none at all. I do not have a ton of news, but I guess I have some. My Business is still alive for one, and something that I would have considered Impossible as of last year. Hadent seen One positive outcome from a small business owner in this type jam, in over 4 years of research.. Well? If it is still around, and I can make some time, I would like to find all the posts. Looked for a bit, but could not find the area. Hope all you folks are doing well. Hang in, and enjoy each day , the best you can. Best regards,
whoknew62 |
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Whoknew62,
Hello, you can find the "Small Business Owner's Thread" located under the
"Chronic Pain Advocacy Board"
Welcome back and we look forward to hearing more about your business.
Thanks
Pa_Namma
APF/PainAid Assistant Board Team Leader
APF/PainAid Chat Host
APF/PainAid Board Monitor
http://painaid.painfoundation.org
A United Voice of Hope and Power Over Pain
"The Views or Opinion(s)contained herein do not necessarily represent those of Pain Aid or the American Pain Foundation."
Updated by PA_Namma on 30/07/2007 08:59 |
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First time sharing with the pain community. I am well beyond embarrassment, so here goes. Due to radiation treatment after colorectal cancer seven years ago, I was left with rectal pain which my doctor attempted to relieve with Endocet. This year I had surgery for small intestine obstruction which was caused by adhesions from the first surgery. It's scar tissue that takes years to grow to a point that causes blockage. After this surgery, the rectal pain became unbearable. In addition to Endocdet, my doctor prescribed fentanyl patches. I also just started physical therapy. So far, the pain is still in the somewhat tolerable range to unbearable. It is always there to some degree. The loss of my job and the cost of medications and physical therapy along with the psychotherapy that my mental state finally required is taking down on what feels like a runaway train. Bless anyone who can offer any information and/or suggestions. kandie
kandie
kandie
kandie |
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Dear Kandie,
Welcome to PainAid! There are others who suffer from similar causes for their pain and I'm sure as you participate, you will meet them.
Probably the best places to meet folks with similar issues to yours would be on the Chronic Pain board, Diagnosis & Treatment and Pain & Related Medicine.
You can also post questions to our Nurse Consultants on the Nurses Corner and they may be able to help you with some information.
Again, welcome!!!
PA_Carolina
APF/PainAid Team |
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Hello Kandie,
I'm not suggesting that there is any other surgery like what happens when you have piles removed (talk about embarrising!),but when a friend of a friend of min e...LOL!, had it done, the process of removing veins around and in the rectum, left me...I mean them, totally numb.
I'm wondering if you can ask your doc. about removing the nerves surrounding that area????
I can relate to the pain piles cause,so I can associate a little as to the type of pain you must be bearing. How dreadful!
I'm not sure, but does endoset cause constipation?
Hugs
Useless |
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I would like to suggest (and it's probably been suggested before but I don't remember) that we have an edit function for when we are posting new messages or replies to other messages.
I just typed an update on the CP board and forgot to add something. I forgot about it til after I posted and I wish we had the edit feature so we could go back and add stuff without having to send a new post with the new information.
Kristy |
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I posted for the first time last night and forgot to ask if anyone with fibromyalgia has been tested for Vitamin D deficiency. I recently saw a new rheumatologist who tested me and said I was deficient. He has put me on Vitamin D supplements of 50,000 IU weekly for 8 weeks. If anyone has had any experience with this I would love to hear from you. Hope you all have a good day. God Bless.
Cheryl Ann |
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i would like to see a board about sarcoidosis too.i can't seem to find out anything here in canada.or im not sure where to look maybe.that would be of great help thanks.i have sarcoidosis and fibro too.but also a other treatment for pain other then narcotic's would also be nice.thank you
kathy(canada |
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Hey firstmate7: I welcomed you under the International Board as well, so pop there and take a peak.
Feel free to start a new topic on Sarcoidosis under
Diagnosis & Treatment http://discuss.painfoundation.org/topiclist.aspx?cbbsid=16 . To do so, click on Add New Topic and call it Sarcoidosis. In googling it, I've found that it is an auto immune disease and can attack various organs. If you'd like to give a few more details in your new post, others may be able to better help you. Also the Nurse's Corner might be familiar with this disease as well: http://discuss.painfoundation.org/topiclist.aspx?cbbsid=28
I've noticed support groups in the U.S., you could try contacting them to see if they have any Canadian info...you might meet Cdn. members by joining since pain has no boundaries.
Hugs and miles of smiles,
PA_Gootes
APF/Pain Aid Team
A United Voice of Hope and Power Over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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I am looking for a topic about idiopathic polyneuropathy and auto-immune conections. First I lost hearing suddenly in one ear then the tingling started followed by the intense burning pain which can become almost intollerable. There were several other auto-immune problems in between but none of the Drs think they are connected.
I am trying to manage life with CP, have a pain-pump delivering morphine, bupibicaine and clonopine and am taking Lyrica, Hydrocodone-as needed for breakthrough&Cymbalta |
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Dear Jobojarr,
Welcome to PainAid! I'm glad that you found us.
To my knowledge - this is a new topic on me. It sounds like you're looking for Diagnosis information, so I would recommend you post your question under diagnosis and treatment. We also have a Nurses Corner and Experts Section where you can ask general medical information that might be of assistance to you.
PA_Carolina
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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A friend of mine would also be interested in this topic.
painfullyyours |
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my pain mng. doc. retired. looking for a new doctor who will prescribe same meds....oxycotin and roxicodone, central jersey. any help out there?? been on these, LEGALLY, for 5 years. plz help |
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Hello Lisi,
Welcome to PainAid! We have a resource section with links to several doctor locators - depending on what type of doctor you're looking for.
Here's a link straight to the Resource section (http://www.painfoundation.org/ResourceLocator.asp)--- just click on Find a Doctor and you will see the different options.
PA_Carolina
APF/PainAid Team
A United Voice of Hope and Power over Pain
"The views or opinions contained herein do not necessarily represent those of PainAid or of The American Pain Foundation." |
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I'm sure you must have gotten a referral by now, but in case you are desperate the Bergen County phonebook listed a doc - since relocated to Edgewater - who took care of me when I was visiting my parents there.
painfullyyours |
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about the question of vit D deficiency, i was given that at the same dosage. i had no adverse reaction to it but it did not affect my condition in the positive either. be careful when taking it as it has a bad interaction with magnesium which is in most calcium supplements, antacids and otc cold prevention type supplements (airborn etc.) |
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I have been put on Vitamin D. How long does it take for it to help? I would like to know more about Vitamin D. |
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Hi,
I would imagine you could find an answer from anyone on the chronic pain board, nurse's corner, or pain and related |
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Has anyone out there had severe weight gain (over 200+ lbs.) since getting Fibro and/or RSD? I have both chronics and due to meds and severe pain in my feet, legs, hips, back and (upper right extremity) I am unable to stand or walk more than a few feet without severe sweating and crying/panting in pain. HMO and W.C. won't get me a wheelchair. I watch what I eat-organic mostly no garbage foods or seconds. HMO and W.C. MD pushing me to have bariatric surgery. With the RSD especially I am scared to have any type of surgery let alone one that doesn't seem indicated for someone who 1) doesn't overeat as many typical bariatric patients do; 2) will be unable to walk for exercise to get the weight off after surgery-I am also very sensitive to chlorine so have trouble exercising in pools-and of course; 3) having RSD any kind of surgery is not good because it can cause RSD to spread.)
My HMO docs and the W.C. MD can't look at me without seeing a 400 lb woman. They can't see someone who did not weight this much when this whole 12 year nightmare began. They think I sit at home and eat bonbons and chips and pounds of hamburgers. I don't.
Obviously, I need a new W.C. MD but that is another area I need to ask the group for help with. I live in the South Bay area of L.A. County. I have tried internet searching. It is incredible to me that L.A. doesn't have up to date MD's that treat RSD and/or FMS!!!!!!!! (The RSD is under the W.C. and is a settled case with supposedly ongoing pain treatment. The W.C. insurance just doesn't want to pay for much however. Maybe to be fair, maybe it's the current MD I have!!!! He doesn't think I have RSD and that I just need to lose weight!! UGH!!!!!!)
Anyway, I need help and support about how other people have dealt with the weight gain. Has anyone had the surgery and been successful with it? Has it helped lessen your pain of RSD and /or FMS? |
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Dear kat3mom,
My apologies for missing your post. I did not see it over here.
Weight gain is certainly an issue that many pain patients face - often from the inactivity, side-effects from medications, and depression.
Our members may be able to share some of their experiences with this issue -- and I would encourage you to post this question on our Personal & Family board.
I can imagine how frustrating it is to get across to your doctor if he can't see past the weight issue. One way to help the communication would be to sit down and talk to him about it. Express your concern about the added weight --- express your desire to find out what can be done -- what medications might be contributing to the weight gain, etc.
You might even bring a picture from your pre-fibro days -- and perhaps an advocate from your family who can attest that you're not "sitting around eating bonbons all day."
I think perhaps if you approach it as a concern of yours -- and ask how it's related to the fibro, you may get a better response from your 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."
Updated by pa_Carolina1 on 27/06/2008 06:22 |
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SCS now what. Has anybody else had a bad experience? |
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Dear Dfreeman,
There is a great topic on the SCS on our Diagnosis & Treatment board.
You should be able to click on this link to get there.
http://discuss.painfoundation.org/replies.aspx?cbbsid=16&tid=4727 |
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Hi this is Patakins, I am new here, with all the same pains as every one else here. I do have a question or maybe a problem?! DOes anyone have a problem getting around outside when you HAVE to go some where? The handicapp, places are so far away from the stores & if I don't have some one helping me. I can't go in a store because most of them do NOT have a wheelchair or scooter or buggie. This is a true problem for me. I wish I had the energy to be an advocate for handicap people. When I could walk,I never had a clue how hard it was for handicap people.Now my heart breaks because I can no longer go into a store alone.
Just thinking out loud....patakins....I am 53 yrs old |
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Hi,
I had lung surgery 4 years ago and have had chronic pain ever since. I'm looking for others who have had the same surgery. I'm 40 years old and had half of my right lung removed.
I hope to talk to someone else who has had this problem.
Thanks! |
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Hi Everyone,
I would like to hear more about the psychological affects endured upon each individual when told they are addicted to pain medicine.
Most people trust everything a doctor tells you, so when you are accussed of being an addict at such a vulnerable time, your whole life turns upside down.
I would like to hear how people who have been in this situation, have delt with it, or successfully debated with their doctor's otherwise.
Thanks
Lee |
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Great site! Is there a search feature?
mountainsnow |
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A search feature is being added to our website. In order to search the PainAid forum, you do have that ability within each board. For example, click on the Chronic Pain discussion board and you will see a search box on the right hand side, just above the posts.
You can type a word or phrase to search for and all threads with that word will be displayed.
Just let us know if you have further questions on that.
Thanks for asking!
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 have no insurance and applying for disabilty and need help finding an center that will help with my cronic pain I am i SC USA can some1 please help me find some helpsomewhere |
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Dear reddog,
I'm not sure what you mean by a center - (a pain clinic) - we have a resource locator (http://www.painfoundation.org/ResourceLocator.asp) which may help you finding all sorts of resources.
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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Suggestion: Information about peritoneal and intestinal adhesions, and the horrendous toll they take on one’s body. Information is thin and hard to find. I wish we had a better support mechanism for adhesions. |
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Hello. I just found this site. I am trying to sort out without knowledge why all the botched surgeries for cancer reconstruction have ended me in ongoing pain, and what to do about it. I regret the 2 tries for reconstruction, but not at the time. Denise |
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Anything about PAGCL (no cartlilage in shoulder)? The only info I can find online is about lawsuits. Would like to know what others are doing to treat the pain (meds, surgeries, etc). My doctor has me on Vicoden, but it doesn't always help. |
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Hello, My name is Rhiannon.. 38 yo male with AIDS and Chronic Pain - HIV neuropathy. is anyone around that knows any more iinformation about us and how to deal with the Pain.
I have tried many things and the only thing that works so far is Oxycodone. I have seen many specialist yet they clain they do not treat my type of pain nor write scripts for meds that i am on. I was told I was a candidate for a pump yet they stated in all cases they have had with persons with AIDS, usually die within 6 months. I had the option but turned it down... I cannot find anyone and my doctor only gives me enough meds to get around to do small things. I want a life again. but with Pain.. I cant deal with it. thanks.. wishing you a none-painful day..
Rain |
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