Reflex Sympathetic Dystrophy Support Group
Reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a chronic condition characterized by severe pain following injury to bone and soft tissue. The most common symptom is burning pain. The patient may also experience muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or...
Hi, my name is Deb. I was recently dx with rsd after having hip surgery. Right now it isn't too bad - mostly that topical nerve pain - burning pain. I have fibromyalgia too so when they rub my leg harder it hurts but so does the rest of my body - that's nothing new. Was your burning pain really itchy as well?
The doctor tells me that sometimes they can keep this from going further. I hope we can do that, especially after reading some of your stories here.
It's kind of a slap in the face for me. I went to have surgery on my hip so I could get myself in better shape and now I may not be able to walk?? I cannot dwell on that for long - I've got to focus on the fact that we caught this at an early stage and hopefully we can beat it.
Has anyone here been able to keep your RSD from going to stage 2 or 3?
Well, anyway, I look forward to getting to know you better in the future. Hopefully we can help each other out.
The doctor tells me that sometimes they can keep this from going further. I hope we can do that, especially after reading some of your stories here.
It's kind of a slap in the face for me. I went to have surgery on my hip so I could get myself in better shape and now I may not be able to walk?? I cannot dwell on that for long - I've got to focus on the fact that we caught this at an early stage and hopefully we can beat it.
Has anyone here been able to keep your RSD from going to stage 2 or 3?
Well, anyway, I look forward to getting to know you better in the future. Hopefully we can help each other out.
So sorry to hear of your diagnosis. I am new to this as well and I also have Fibromyalgia.
To be honest I have a hard time sometimes distinguishing my Fibro pain from my RSD pain. I do get Itchy feelings as well sometimes when I get burning sensations.
My RSD didn't come from any specific accident. I have it throughout my whole body and my doctor said it was a long time coming based on my history of pain and accidents. I was hit by a car when I was 11 and again when I was 15 (I'm 32 now)- I must have a target on my back or something.
I have suffered from back pain and migraines since then, but was only recently diagnosed when the pain snowballed with the fibro and I found I could no longer function in my day to day activities.
I am at stage 2 and am working to keep myself from going into a stage 3. I take a weekly walk with a friend of mine who recently had a double mastectomy and is undergoing chemo right now. I think its good for both of us.
My Rheumatologist gave me some simple exercises to do to keep my body from going into atrophy (I also have hyperextended mobility, so he said not to over extend my joints or I could aggravate the condition.) I am going to post them on my blog when I get the chance because he physically showed me what to do, then gave me a paper with the worst description of them possible. I'm struggling to remember what one of the descriptions means. When I get them posted I will post it on here in case its helpful.
Roxanne
I am so sorry you have it throughout your body, that's awful, expecially at such a young age. I have a good friend who I interface with at least weekly who has gone through many health hardships including a double mastectomy and fibromyalgia. It certainly helps to have someone who understands.
My PT tells me I have hypermobility of at least some of my joints too.
Will close for now, but I hope we can keep in touch.
Thanks again for your response!
Deb
No worries. I totally understand a crazy life. And its not always easy to keep up with the posts on here.
My RSD does get worse when my Fibro flares. I had a follow up with my doctor yesterday and she basically described it to me like this: The RSD is my main problem. It causes Strains and Regional Pain in my joints, muscles and nerves. The Fibromyalgia however keeps the pain from the RSD from Healing, because when Fibro flareseverything just becomes heightened. The medication I take (right now Lyrica) won't get rid of all of the pain, but the hope is that it will combat some of the Fibro pain allowing me some reprieve to let the strains in the RSD heal. I hope that makes sense.
Roxanne
We caught the knee quickly, knowing already what was going on, and got nerve blocks done last week, spending almost a whole week in philly.
Here are the stages according to the Neurological Associates Pain Management Center. (this is my blog, I just retyped it so it was easier to read)
http://www.dontdiagnoseme.com/2012/06/crps/the-stages-of-crpsrsd/