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...

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Bluesydeb 12/02/2012

Hi friends. For those of you who have the RSD in you arm(s), can you tell me where it started on you? Mine seems to be mostly on the inner part of my arm that brushes against my body. It seems to be worse around my elbows too. I've got it in both legs and it has moved up it seems. I went through 5 or 6 lumbar injections for the legs- does anyone know if the doctors do more when it spreads?

Lots of questions tonight, sorry.

Oh, 1 more - any of you have fibro before getting RSD?

deleted_user 12/08/2012

Hi,

My pain started in my hands and wrists, for years I thought i had carpel tunnel, and then it started to spread up my arms. My arms is where i have it worst. Im not sure more is done when it spreads. Depends on the doctor I guess. The doctor I saw said I had it throughout my body, but wasn't given much in the way of treatment.

As for my fibro, I was told it was triggered by the RSD. That is a whole nother set of problems!

Bluesydeb 12/08/2012

Thanks for your reply, Rockwell. Wow, sorry your doctors didn't treat you more aggressively from the beginning, maybe you wouldn't have gotten it all over? What do you do for pain relief?

deleted_user 12/12/2012

Advil, but I try not to take it too often because of the side effects. (I am on Lyrica for the fibro) I use a heating pad, take hot baths, ice packs, my fiance will rub my arms for me periodically. When I had job benefits I used to get massages, but I haven't had that luxury in a few years.

I just moved and there is a community centre near by so I am going to look into Aqua fit soon.

What have you been doing for the pain?

Bluesydeb 12/12/2012

My doctor prescribed a topical cream that has to be compounded by a pharmacy - it's ketamine, neurontin, and lidocaine. Of anything I do for the pain, I think so far this is the best.

For fibro, ibu/Advil has been the best pain reliever but by guts couldn't take it.

I'm surprised your using ice - I've been told no ice. I suppose all doctors have their theories, huh?

Have a low pain day!
Deb

deleted_user 12/12/2012

That sounds similar to a mixture a friend of mine was using for her pain.

My Pharmacist told me to take Ranitidine (Zantac) if I need to take the Advil regularly. It will help prevent it from eating away at my stomach.

Yeah it sounds like every doctor is different. I only use the ice if there is swelling, which is typically in the summer. I just moved but my last apartment didn't have air con-conditioning, so the ice was a wonderful reprieve.

deleted_user 01/09/2013

It started in my left hand. My fingers seized up & are curled. My hand is always changing, as is the level of pain....and where the most pain is. From my hand it went through my lower arm & up into my shoulder & neck.
Over the last year I find my neck getting "stuck". If I move too fast or turn my head at an angle...my neck seizes up & i can move my head. Very scary & painful. I just try to breath & relax the muscles & not freak out. I also get headaches now. Was never prone to them my entire life.
Some days I want to rip off my arm. Some days pain meds makes it a good day. Some days I just do what I can or do not much if thats all I can do.

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