Well, I haven't seen anyone for the RSD since my hand specialist did all he could to help my wrist and my hand therapist finished out all of the visits my insurance was covering at the time. After that I did my own therapy on my L wrist and hand, trying to do as much with as possible...which is very little compared to what it was since I was left handed before.

As for the new areas...I suppose you would say they're self-dx'ed. So so so tried to deny what it was, but knew pretty quickly it had spread. Denied the abdominal area the longest, telling myself it was my imagination and it would get better as more time passed after surgery. That didn't happen, so a year later I finally had to admit to myself that it really had gone there.

I was in a car accident in 1992 and my L hip and knee were jammed and twisted, making my L leg 1/2 shorter than the R. Both of my knee caps sit off-center, so even before the RSD spread, they gave me problems...kneeling became impossible. I've been able to hide my limp most of the time, but can't now.

Not sure if you're familiar with narcolepsy and cataplexy, but cataplexy is generally brought on by strong emotion and causes the muscles to go limp, kind of a shaky jello feeling, and you lose control. Laughter, fear, and stress seem to be my main triggers. When I was thinking the other day about how to explain the weak feeling in my knees and hips, I realized it felt just like cataplexy. I go back to my sleep specialist Thursday, and I plan to talk to her about it. It's kind of funny...everything I have is made worse by stress...and everything I have causes stress.

I'm used to the stiffness and weakness in my L hand...very annoying, but I just deal with it. The legs aren't as bad as my hand yet, but I don't walk on my hands, so I definitely notice the weakness and pain in my legs. I have arthritis and fibro, but the RSD is definitely it's own kind of pain.

Oh and that sucks about it being in your neck. I read that and cringed...have enough neck problems to know I don't want to deal with RSD there, too! That has to make things rough!

No, I don't work. I've worked less than 5 years out of the last 24...enjoyed being a stay at home mom and wife. Since my hubby works and has a good paying job, I don't know that I would try for SSDI or anything like that. I did fill out a thing on their website one time and they sent me a letter saying I hadn't worked enough to qualify...which seemed kind of crazy to me since there's all kinds of people on it who have NEVER worked.

Thanks for the input and advice. I'm still not sure at this point which way I'll go. I see 2 docs Thursday (sleep and gyn), and will be talking to both of them about the RSD. I know my hubby will insist I see someone about it since he can barely touch me anymore and it's so hard for me to walk or stand. I think he's having a hard time with this. it was just a few months ago that we found out I had narcolepsy and my license was suspended (California law). I'm ok with not driving cuz I don't feel like it's safe, but it sucks relying on other people if I have to go somewhere.

Again, thanks for the input. It's good to talk to people who know what this stuff is.