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?