I re- read your post this morning. My conditions for PN or RSD has not spred much so far, and for that I am grateful after hearing about how bad some of us get. I can tell you I am scared however. I am taking suppliments and thats about it. Some pain medication. Even if we agreed to give our doctors access to our cases, I am not sure there is anywhere in the country that is acvtivly trying to do something about this horrible CRPS. If there is, would you let me know? I would play guinee pig gladly, if I thought there was a chance that this could be resolved or cured. My doctors are worried for me. I have another two ganglion cysts on the ankle. The roots of it are going inside the joint of the ankle. I already had two removed and had the torn misdianosed tendon problems. They can't do the surgery because of the RSD or PN. They arn't making me go for the tests, as in either case surgery could make this worse.
Do you know anywhere, that real research is being conducted? Can you tell me what journals or articles you have read that might shed some light on this? I appreciate any information.
I am sorry you go through so much with this condition, and of course all the rest of us who are miserable with it.
I don't want to go back to a wheel chair, and just am wondering if there is anything more I can do for myself.
The suppliments seemed to help, especially B12 Shots. ginnie

Im sorry you're having a rough time, I don't think it's possible to stop worrying about CRPS/RSD while it is still active, it is just too intrusive. I only recently got my most current pain increase under control by going back on Lyrica....I was gutted because I'd got off the meds for a month and thought I was doing ok. Turns out it was just that the darn Gabapentin I'd been on wasn't doing anything anyway.

As far as research and stuff goes, I'll try and find some specific papers, but I haven't always kept track of which ones I've read. I know that there ARE some very dedicated scientists researching CRPS on the USA, more there than here in the UK I suspect! We can't ever give up hope that someone will find a way to help us more than they can now. It's the lack of useful pain relief that distresses us most I think, even their 'mega' pain killers like morphine just don't do much. The pain is the frightening thing simply because so few people understand how bad it can be. Everyone thinks they know pain...

Sorry, I know this isn't the thread for this. Take care of yourself and hang on in there.

Bram.

The Useful Sites and links sticky thread does have some research info as well http://neurotalk.psychcentral.com/thread247.html

Maybe start a new thread if you wish to discuss existing research and resources so as to keep this one on topic.
thanks

Left foot for me, after a simple stress fracture.

The more people that state something like left foot fracture etc, the more weird it gets. I had three torn tendons and went and got two ganglion cysts removed. That did it for my left foot too. Sorry all of us have go through it. I am on B12 shots and it seems to help. Pain meds too. Take care Jenn. ginnie

Updated info:

Lower left : 13
Upper left : 2
Lower right : 4
Upper right : 2


wow, those are definitely statistically significant numbers, although the sample size is low. *edit*

My daughter also brought up the handedness relation - she suggested *edit* should track if the people that had it in the left foot are also right-handed.

My daughter just got some bloodwork done today - I'll see if they checked for B levels. I've heard that from a few people now ...

It started in my left knee from a fall. I now have it in my left ankle and foot as well, along with my right knee and left wrist, all due to spreading over time.

Mine started in my right hand/wrist following wrist surgery.

I am right handed.

Updated updated info :

Lower left : 14
Upper left : 2
Lower right : 4
Upper right : 3

(although I probably counted wrong ... )