Hi VividDC, I feel for you so much, this is a cruel cruel condition and it does indeed mangle your entire life....BUT as catra says, you can get some stuff back again, you can adapt other bits to get around some of your new limitations, and believe it or not - you can enjoy your life again. Not quite as much as you did perhaps and not in the way you had dreamed and planned, but it can happen.

Catra gave you excellent advice, I won't replicate it if I can help it lol!

One thing I didn't notice in your post or Catra's was any mention of Epsom salts. They are surprisingly good at helping with CRPS burning pain. Get some unperfumed salts (Internet or good chemist) and use them in a warm (not hot) bath. Also, I personally find them best wrapped in some plain linen dampened with ordinary tap water and placed on the burning area. It roughly works by blocking the calcium channel pain receptors I seem to recall (sorry if complete garbage lol). Whatever, they do help so give them a try

I totally get your feelings of loss and grief, frustration, sadness and anger at the whole crazy roller coaster. I have just started my third year with this (mine started after a simple knee arthroscopy) and I am only just feeling as though I have any kind of control for periods of time. I'm not back at work, I had to leave my job because it was too physical and for two years I could hardly walk ten yards without help, but I've started working for myself and controlling my own hours. I can't earn what I used to though, and I'm very aware of how lucky I am that my husband works full time.

I also sleep with my leg out of the covers, and I put a spare pillow at the end of the bed under the foot of the quilt so that it raises the end off my feet. My CRPS spread from my knee to both feet, my whole left leg, and my left arm as well now. But I've been very gradually increasing my activity levels from very basic exercises, to more walking etc. in the last two months I've ditched my wheelchair and crutches, and today I actually drove myself to work (only a couple of hours) and back, and did a small food shop alone. Amazing, I wouldn't have believed it 6 months ago. Felt great.

I'm not trying to show off, I'm very aware that my recent progress could slide backwards quickly, but I'm fighting to keep what I've found. I'm not quite sure how I've got here to be honest - but all you can do is keep fighting and trying to keep bits of your life from disappearing completely. Every aspect of my life has been affected negatively, my relationships with everyone from my husband and children to friends and close family. No one but another sufferer can 'get' the true awful reality of this thing. The pain and psychological scarring go very deep, but I do believe that you can find some calm amid the storm, but it takes a long time, and even so, I bet we all still have days where the despair and fear just get you anyway.

I suppose I'm trying to say that all you can do is fight and keep learning about the condition and your body, stuff you can do, stuff you can't now... But don't ever give up because after two years of wondering if there was going to ever be a point again, I am finding some relief from the worst of the pain and disability.

I do so hope you can find some real help and peace with this, and find your way through. You are obviously so strong to get this far and deal with everything you have, so be proud of what you are doing every day - because on here we do understand how hard just getting out of bed is.

Good luck and I hope you have a better day tomorrow, and a bit better every day after. You deserve a break.

Bram