I saw one of the top rsd specialists yesterday. I was shown to have rsd in all four extremities, middle back(thoracic spine), lumbar(lower back), eyes, and my right leg has gotten all the way to stage 4.

They also did a nerve biopsies and showed that I also have peripheral neuropathy in several places. They showed my small nerve fibers are also affected. There really isn't any different treatment for them though.

So somehow I wound up with two nerve diseases. They are both progressing rapidly. My leg and arm pain is taken care of by scs for the most part. However, the leads don't really hit the parts of my back that are experiencing such pain. I'm not sure where to go from here. I was prescribed physical therapy. The small towni live in terrifies me. I'm worried about finding a therapy team that will help not hinder. The good news is they are off the ms wagon. The bad news is this seems much worse. The pain never stops. I don't know what to do. Very discouraging.

My arms are actually fairly strong. In fact, they were caught in a stage of rsd fairly early, and have recovered quite well and the rsd helps their pain very well. Fortunately that helps with pushing myself in the wheelchair.

Does anyone have back rsd? If so, what are your coping tips?

First of all sincerely my heart goes out to you!
Mine started in left arm and hand (broken wrist surgery) and was caught fairly early, by the grace of a WONDERFULphysical therapist.
I too am fearing the spread because I can now feel the pain further up my arm.
I can not imagine having it confirmed in all limbs and back. Do you think it has anything to do with the SCS surgery or maybe it spreads anyway?
Kevscar talked about spreading happening to 77% of RSD/CRPS anyway.

We need more awareness and research for this monster disease! So many questions! What makes it spread, what prevents it, what slows it?

The things that help me cope are nerve blocks, P.T., moderate consitent activity (but not to point of pain) warm epsom salt baths, THIS SUPPORT GROUP. Vitamin C 1000 mg. and 500 mg. per day is recommended by my PM Dr. to help prevent spread.
I try to borrow from a young girl's quote. "Living with CRPS, not dying with CRPS".

I have RSD in my back too and the things that have helped the most with that are:

1. Warm baths with Epsom salts
2. Lidocaine cream
3. Desensitization therapy

I have other things that help some of my other areas with RSD...but for my back that is unfortunately it. The desensitization therapy was HARD and very painful...but after going through it I am able to wear normal clothes most of the time where as before I couldn't stand ANYTHING touching my skin there because the pain was so bad. I still have bad days where the sensitivity is worse than normal and then there are only certain things I can stand to wear...that's where the lidocaine cream comes in handy for my back. It doesn't help a LOT but any help at all is appreciated. The hot baths with Epsom salts I take every day...sometimes twice a day if my pain levels are particularly high.

I am so sorry you are going through this. Take care and keep us posted.

Well, I believe wholeheartedly the mid back spread was due to the scs, but the scs does help. I bought a huge bag of Epsom salt today. I also believe spread probably would have happened anyway, but I was a fast spreader. Thank y'all for your kind thoughts. It's always nice to know when you aren't alone!! The back has been the worst by far.

Hey TK! Glad to hear you do not have MS, but sorry to hear you have PN on top of RSD.

This may be a stupid question, but have they tried to reprogram your SCS's to stimulate your back? I get incredible coverage in my entire midsection, but do not want it there so they set the programs so they don't go above my hips.

Hope you can get some relief soon!
Nanc

I am actually trying to get in touch with my rep now. I'm hoping between the two of them, I can get some back coverage.