Regarding the 'research' chestnut...

Can I just say that as someone who has only had this damn condition for two years, I would be prepared to help in any way that might forward the thinking on CRPS. It is such a vile, unrecognised, misunderstood and cruel thing to have, and with something 'rare and special' like this that so many doctors and nurses have never even heard of....education is the way forward. Maybe this little thing might spark an idea in someone who can actually do something about it.

I do understand that people don't want their personal details given to another party without their permission, I wouldn't myself! But a straw poll like this on a site where our personal information is hidden unless we choose otherwise, is surely harmless enough. I'm sure the OP wouldn't pass on any extraneous info.

My doc asked me the other day if I would be prepared to have my records read by a research student who had a special interest in CRPS and was working on a new approach. I said 'crumbs YES, give them everything!'. She asked me if I might perhaps even be willing to talk to them... I said 'yes, anything, I don't mind being examined, my records read, anything that might assist in any way at all. I can see them as soon as they like!' (I appreciate that there are many of you who do not feel the same, and that is perfectly understandable considering the nasty symptoms of this thing.)

CRPS research and treatment is so confused and stagnant. I've read many research papers and it is clear that there is no consensus on approach, and most doctors have their own ideas and methods of treatments. They are not all right, and some do terrible harm by guessing what to do. Ideas that might lead to something tend to come from groups of individuals with a common purpose or understanding, rarely from an individual - it is only common sense that a doctor might take one person's account with a pinch of salt, but evidence from a similarly affected group as important evidence.

This disease isolates us all in many ways, and for me this site is the one place I know you all understand what 'burning pain' is... How many of our doctors even write down all the things we tell them? How much of what they do is passed on and discussed between their peers? Very little is my guess.

Hope everyone has a good day today

Bram.