I have RSD, real pain is developing in my thighs under the burning pain, what helps this, please?
RSD is from sprained ankle July 2008, have really bad burning in legs that is now unbelieveable pain under neath it, not really a spasm, deep tissue pain, Nuerontin no help for this, what should I do? still on crutches.. primary doctor doesn't really know about RSD.
RSD pain can be difficult to treat. Here's a link to a number of medications and other treatments used for RSD depending on the type of pain you're experiencing: http://www.neurologychannel.com/rsd/treatment.shtml
I'm not surprised your primary care doctor doesn't know much about RSD. Finding a doctor who regularly treats RSD can be a challenge – but you really do need to try to find one. Unfortunately, there is no particular medical speciality for RSD. It usually boils down to getting out the phonebook and just calling various doctors and asking. Some good specialists to call include neurologists, orthopaedic specialists, rheumatologists and physiatrists (physical medicine and rehabilitation). You may even have to check surrounding cities or be willing to travel a couple of hours to find someone.
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I myself have suffered from RSD for 11yrs. now. Keep reaching out on the internet learn all you can on the disorder. Most doctors do not know much about RSD. I myself have walked into several pain clinics and found I seem to know more than the doctor I am seeing. You have to find a doctor who sympathizes with RSD. You want to be comfortable with the doctor to where you can speak freely. I found this helps more than anything. Having a relationship like that is what you need. It wont be easy you will have to search. When it comes to pain medications, they do not want to prescribe them. If they only knew what we go through everyday. It took me yrs. to find a doctor I was comfortable with. Just last month he retired and I'm trying to find a new one at the moment. It is so difficult to find a doctor whom is right for me. That why I think you should know all that you can on RSD. That way you know the doctor knows what they are talking about. You know they understand what you go through everyday. RSD is like a cancer that slowly kills and tears down the body. The pain is that of cancer the burning is like fire the stabbing just makes you want to die. Its consent yes pain medications do helpsome what. I myself had a nuerostimulator installed. It helps very much along with the pain medications. If you are interested and from my area I can recommend a doctor for you to see. I hope my response has helped you. I wish you luck and remember find a circle of friends that are going through the same thing. If its online its online its easier on us anyhow. I feel its important to have a support system though you need that. You may contact me anytime my URL is melia357
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DCS1983
Monday, September 28, 2009 at 09:38 PM
melia357
Friday, October 09, 2009 at 11:59 AM
Daniel,
Hello, my name is Danielle I myself suffer from RSD. I suggest she tries a pain clinic oppose to a PCP. If she is already seeing a pain speacialist she has a few options. She needs to read up on RSD to know as much as possilbe. You will find alot of doctors out there do not know much on the disorder themselves. Three medications which have helped me out alot are MS Cotion, MS IR, and Valium. The Valium helps quite a bit with the nevre pain believe it or not. One other thing that has helped me is a neurostimulator. They will place her through a trial with the unit before installing it to see if she gets relief from the unit or not. Her pain specialist should be able to preform the trial. With RSD 30% relief with these stimulators is a good outcome. If the trial goes well she will have to see a nuerologist to install the unit. Her pain doctor most likely will assist on the surgery though. They even have rechargable units now. Before you were looking at a battery replacement about every3-5yrs. depending on use and how high it is set. The newer units are to be replaced every ten yrs. battery replacememnts are not to bad. They palce the battery under the first few layers of skin and then run two lead wires to the brain stem. Its very similar to a tense unit but internal. They really help when you are in extreme pain. The unit comes with a hand held remote. Which allows you to turn up the intensity when needed and to lower it when not as severe. RSD is a cronic pain disorder so keep in mind nothing is going to kill the pain completely. These methods will hopefully make it bareable for her. When I was first dignosed ten years ago I thought I was going to die. Thats why finding out all you can on the disorder will help in the long run. I would also suggest a support group for her with others whom suffer from RSD. Its amazing how talking with others that understand what you are going through can help. At first I thought that I was crazy until I met a nice gentleman in my area that suffers from this horrible disorder. I then found that I wasn't crazy other people just couldn't understand what I was going through. They would try but it wasn't a comfort like talking with someone in the situation. Your wife is welcome to contact me at anytime by email or phone. I will list all contact info at the bottom of this comment. I hope this has helped you a little for I understand what your wife is going through daily. It's not easy living this way. Sweating only down one side, having unbareable pain constantly, and doctors whom are not sympathic. I wish you and your family all the best and please tell your wife I'm here for her if she would need to talk.
Danielle
email: melia357@yahoo.com
See a pain management specialist - I fell 15 + feet and I tore my knee up pretty bad - my orthopedic found it because I could not staighten my leg - I agree - its deep tissue - like in the bone pain - I'm having nerve block injections - not pleasant - but its something - I can't tell if its working - but at this point - its progress -
I'm off, a teacher, and I'm beginning to get worried about my ability to work!
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reruho
Friday, August 21, 2009 at 08:16 PM
Hi my name is LaDonna. And I know what you are going through.iam going through the same thing.I had no injury to my right foot.I was admitted to the hospital in may of this year.And RSD is what they told me i have.Got pain meds in the hospital,then when i was released,and had to keep going back to the emergencyroom.couldnt get a doctor to give me anything for the pain but nuerontin,and it does not work for me.and finally got my medacaid card,now iam having trouble finding a doctor to help me.I dont have the burning but I have very chronic pain and swelling in my right foot.Iam bed riden and cant work.So my heart goes out to you.LaDonna45
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Hello,
My Fiancee' has had RSD for 2 months and it is killing her. She is currently taking Cymbalta, Lyrica, And Ultram for pain.(This does not help at all) She is having a rough time coping with this we live in Montana and the doctor up her is very reluctant to help her for her pain we have tried intensive physical therapy with a catheter. As soon as it was taken out it all came right back. Please let me know if you have any good advice.\
Thanks,
Daniel