Need a proper evaluation
 

Hi,

I've been diagnosd w/ stage one rsd in my hand by having a bone scan, but I was never properly diagnosed or counselled by a nuerlogist, just a hand surgeon.

I had to re-locate to northern ca shortly thereafter, and have been having a very hard time finding a nuerologist specializing in rsd. I have tried the clinics, ie. Stanford, USF, ect. and no help.

I found a pain Dr. in Napa, and he wants to do the implant device...which I just don't feel ready to do. (The blocker shot he tried had so many side effx for me, it didn't help my pain all that much.) His conclusion was that the pain was more due to the mix up in the spinal cord, than the actual injury. You guys know what I mean...

Meanwhile, I feel I am losing strength little by little in my hand and pain is worsening. I really want to figure out how to proceed.

I'm sorry to be redundant, I'm sure this has been talked about ad nauseum, but I could sure use some help.

Thanks, Diana

Hugs, welcome, and sorry you are having to go through this.

Have you been prescribed any medication to help combat some of the effects of this pain? It doesn't completely help everyone but anything that might have some effect is good. I am taking Cymbalta, others use Lyrica, Neurontin, etc. Also, physical therapy or occupational therapy would be of some help. It is painful but if you stop using it, as sad as this will sound, it gets worse.

I have it in my leg and hip. I have had a nerve block, two days of relief and muscle spasms from my back down thereafter. I have just gone through the trial stimulator (what your doc is suggesting) and am EXCITED to be waiting for the permanent.

Keep goals. You used it once, you will be able to again. You just need the positive aggressive treatment. AND LOTS OF SUPPORT. This is a great place for that.

Also other sites you might want to visit:
www.rsdhope.org
www.rsds.org

Hugs. You'll make it.

Take your time and get treatment for your RSD try to find a good Nuero who understands this!
I will say this the old saying no pain no gain is wrong for us with RSD! do what you can in PT stop if it hurts, no ICE either on affected part.
Get a second opnion if you do not want a implant ! why rush into it, find a NUERO! at a medical School!

Welcome, and ((huge pain free hugs))!!

I really hope you can find a good doctor, and that you can improve. I hear you about losing the strength- some of my muscles are beginning to atrophy in my wrists even though I use them daily! :hug:

that is why we must use are affected areas with caution....

Hi Diana,

My RSD started in my left hand. It totally atrophied and looked like a little bird leg. The rest of my hand swelled. I did not (could not) use it for months. I had stellate ganglion blocks, several courses of prednisone, and had a hand therapist who actually knew about RSD. She put me on a stress-loading program, gentle massages and parafin wax program. I was able to build it back up somewhat. While I don't have much strength, I still try to use it as normally as possible (except when I have a really bad flare). It was an orthopedic doctor that sent me to PT. My personal opinion is that the doctor doesn't necessarily have to be a neurologist as long as they can help with the RSD.
Linmarie

Diana
I've been to 2 neurologists, 2 orthopedics and now have my pain doctor as my main physician. As Linmarie said as long as the doctor is familiar with RSD that's what really counts.
My Pain doctor treated my RSD very aggressively from the start, which is the proper way to go about it and he's been wonderful. I actually got my first block at my first appointment with him. It seemed to be happening all so fast that it scared me but looking back I was still trying to accept the diagnosis. Honestly I still struggle with accepting the diagnosis.
Anyway best advice I can give is to trust your gut....
Welcome to the board :)
Jeanne

Your best chance of beating this is to do it now. Don't give up even if everything fails since there can always be a remission but most cures occur in the first couple years.

Some stallate ganglion blocks aren't as good as others since the spot is very difficult to hit and miss the surrounding nerves. There's also epidurals and bier blocks which sometimes work.

I have a ? about the nerve block. I had 2 in the area affected which didn't help. I heard though if off just by a little it doesn't work is that true? Also is the block just to allow you to be able to do more and not be in pain for a short period and then comes back or lasts or actually repairs? I had posted on my issue but I get confused with all these procedures and the catheter I may get is to lessen the pain so I can do extreme pt but doesn't fix the issue I guess the pt is suppose to and so doesn't atrophe but I still though doing more fear damage. When you say it hurts while doing it that is for sure but for people who have dealt with this longer does the pain get better in the long run? How does that happen. Ok sorry about positng on your post.
Anyhow I agree I would go to a neuro. I started first with the ortho,then to the foot/ankle,then the neuro's then the rsd specialist,anasteseolgist so on. I know my ortho wanted me to see a neuro to rule out any other issues. I'm glad I did because through this and I actually have pn other issues happend and it made me feel better I wasn't having a stroke so on cause the tests ruled it out. Is the pain doc actually an anasteseolgist?Hang in there.