So I have had RSD for over 5 1/2 years in my left wrist/hand. It has now spread to both arms, abdomen (including inside I think), face, possibly upper back, and my legs. It had hit my legs pretty hard, attacking old injuries in my knees and hip, making them so weak and unstable that I have to hold onto things to walk at all. I had to get my cane out again that I use when my hip gives me problems, but now it's like I can't go out without it, and finding walking almost impossible...not as much from the pain as the weakness. Oh, and the skin on my calves feels sooo tight and it's shiny! My legs will be burning but be cold to the touch sometimes, and my toes get really icy. Other areas will feel hot. I'm attempting to be in denial that it may be in my vaginal area and in my mouth.

Anyway, I have never gone to a pain doc for RSD (or anything else). The RSD in my wrist/hand was diagnosed by my hand specialist and hand therapist. The nerves in my left wrist were removed over 3 years ago, but the pain remains...I just don't notice the constant pain as much there. Any type of nerve block, shots, pumps, scs, injections, or anything like that would be an absolute last resort. No pain meds I've ever taken have helped the wrist pain. I'm currently on meds for narcolepsy and cataplexy, so a lot of pain meds don't play nice with those. Also, meds have never helped with the weakness and stiffness in my hand. So is there really any point in trying to find an RSD pain specialist? I'm so afraid I would be told it's all in my head...I've heard that many times with other things. I hate doctors as it is, so having them not believe me doesn't make me like them any better. Oh, and I will probably be starting on hormone replacements soon...so hoping the vaginal issues are low estrogen. So if docs are gonna tell me I'm crazy, meds won't help me walk better, and I don't want shots, is there really any point in going to a pain doc?