Glenn - The RSD is for sure - have had it almost 10 years. It has gone from one area to another as I have been injured through the years. Have temperature changes, red, shiny skin, sweating, hair growth changes, swelling for years, many many symptoms, including bone changes. Been diagnosed by Michael Stanton Hicks - one of the world experts and my Pain Mgmt doc is one of his colleagues at Cleveland Clinic. RSD is one of the things that can cause Central Pain according to my PM.

They are diagnosing the Central Pain on symptoms right now - not much treatment for it, so they don't see getting tests done I can't afford because it won't help treat it. Interesting side note... the PM and the Neuro do not know that the other one and do not know each other has said that I might have Central Pain. Because of the PM's high level of expertise I am more likely to go with her than the Neuro, who is known to be good in his local area, but she is very well known. I really trust her and have been treated by her for many years. The neuro has only seen me since April. My GP thought it would be good to get a fresh look and see a different neuro than I have seen in the past.

That is what my PM thinks about the possibility this is some sort of problem in the neck to - that my RSD is so reactive to any injury that a surgery right now is not what I want unless it is something life threatening.... so even if it is a neck issue, that those are often not successful surgeries, so she does not think it is worth checking that out right now until I can get disability and the insurance from that or my situation changes.

cyclops - I don't think mine is arthritis as it pretty much happened within a few days, after being on an antibiotic back in April.

Sue, what does CIDG stand for? I'll google those letters, maybe it will come up.

The autoimmune angle is an interesting one. They really don't know yet what causes RSD. Some think it may be reaction to parvovirus. Who knows. I have an upcoming appt. with my GP, PM and Neuro in early Sept. I'll look up what everyone has mentioned, and then see what they think.

It is so frustrating to not have my hands. While I have been loosing "body parts" to RSD the last 10 years, and my left hand has hurt, I have had use of them. Now, this is frustrating. And, scary.

Thanks for your replies. It sounds like this is NOT a normal part of PN.