I have been looking far and wide for a place like your little community here! What a relief to finally find you.
I was injured on the job in Sept 1992, and the insurance company waited until Aug 1993 to finally operate. It was immediately obvious that something had gone horribly wrong. However, due to the usual work comp junk, they refused to admit it. Therefore, my diagnosis was delayed almost a full year.
I chased treatment all over the western U.S., even took part in a gov't trial, all to no avail. The only thing the experts thought might help would be a spinal stimulator implant, but of course I couldn't pay for it on my own.
I am now in my 14th year of RSD... it has spread to encompass both ankles and both knees. Lately I have been getting strange feelings in my wrists and elbows as well, so frankly I am terrified.
I have recently been diagnosed with epilepsy, as well. I am still unsure how that happened, lol!
I also have aids, so I am unable to go out much, for fear of infections from others. All I have wanted these past few years was a way to chat with others who knew what I was going through... and I seem to have found it!
I look forward to been an active member of your community.