I actually got in a fight with the workers comp. doctor over the name RSD. He was quick to instruct me that it is not called that anymore it is CRPS. Instantly, I was ****** and said "whatever":p

Yeah, I've had that conversation and those expressions too!! Amazing that it has been around as long as it has, and there are still sooo many that are "blank" about it.

That's funny when it's all the same....I really call it CRaPS, because it makes me feel so crappy!! :D

Hi my name is Lisa, I have had RSD for going on 13 years. I am full body with organ involvement. I am also a Mentor for the RSDSA. I'm sure you know that there are 2 types of RSD Type I and Type II which is called Causalgis, meaning burning pain. That name was started back since world war I. On another note I agree that this issue of changing names needs to stop. It confuses patients and doctors. Like we need more of that right? I am in the process of needing a orthopedic due to the RSD causing severe Osteopenia & Osteoporosis, which due to being left untreated has caused bone disease. I just love when they say, " You need and Ortho ASAP!" Really Cause I've called 9 Orthopedics in the state of Louisiana and I get the same response! You have what? What is RSD? I then reply thanks for you time but I don't have time to pay a visit to teach a dr. But I do mail packets of info to them with a note if you feel that you can help me out after reading this info please contact me. LOL If I am gonna teach about RSD it won't be on my $.

Hi Lisa! Yes, I do know that there are two types of RSD/CRPS. I read that Causalgia goes back to the Civil War.
Sorry to hear about your Osteopenia & Osteoporosis. I know what you mean about the Ortho's. I went to soooo many of them trying to figure out what was wrong with my hand. I had one of them wiggle my thumb around (which hurt like crazy) and say, "it hurts too much for me to know what's wrong with it." Really?? I looked at my husband, who sat there in amazement, and said "did he really say that?" Needless to say, that was my last visit with him. Finding a dr who knows anything about it is a challenge in itself, then can he/she treat it...another challenge! Luckily I finally found one, but I was too far gone with my hand and spread began (I was initially diagnosed with it in my face in 1992 and injured my hand in 2009).
I do not blame you for not wanting to use your own $$ to educate these dr's who should know something about it to begin with.
Can I ask how you knew your organs were affected, aside from the obvious pain?
Thanks!!
Nanc

Oh yes I have that one too, I've started carrying a 15 page down load of Anthony F. Kirkpatrick's which leaves most of them speechless :rolleyes: