Hi Renee,

I can only speak for myself, and the way your body reacts to the CRPS might be very different. You can read on the web of many different types and rates of spread... This is my experience....

My CRPS started in my left knee. It started as deep pain with burning or coldness with rashes. Then I had a more stabbing pain, and more extensive burning v icy bone pain. That knee is now still very painful, weakened by long term pain, and the muscles are atrophied to some extent. I've done a lot of physio and exercises which I think I have stopped it being worse. The pain is more intermittent now and more a cold bone pain, and is less hot most of the time (although sometimes it can really kick off if I've overdone it). I get less burning pain, as it's predominantly a cold pain now.

It's since spread to the rest of my leg, my right foot and into my left arm, with similar start of symptoms each time. I tend to get a mild tingling pins and needles pain to start with, which gets more frequent and painful, along with a painful ache as though I've banged it. The area also feels cold randomly, and sometimes hot. Then my skin in the area feels scratchy and sensitive more and more regularly, before the red burning type of pain starts - that phase lasts a year or more. I don't get the burning all the time in any area, it comes and goes daily, tending to be worse in the evening. The rest of the time the area feels mainly icy cold and achy.

I've found this pattern repeated each time, and if I get a new area of the tingling on a regular basis, I do tend to panic a bit! At the moment it is over the left hand side of my back far too often for my liking. I do have some CRPS-type symptoms all over the place at random times, like sudden burning stabbing pains in my right thigh for no reason. They don't tend to be about spread, and I think are just about the nerves misfiring as part of the more central part of the CRPS condition.

That's what mine is like, I know others have milder symptoms, and many more have it far worse. I don't generally consider myself a bad case, but some days I could make a substantial case for it!

Good luck. I hope it isn't spread and more just the vagaries of the nerve disruption...

Bram.