Originally Posted by birchlake

Catra, this is pretty much my exact situation. I am currently experiencing what I think is a "mirror image spread" from my right foot to my left foot. Almost the exact same affected area. Because I have recognized the potential for spread early, I am hitting it with everything I know and the symptoms are not as severe as my initial CRPS diagnosis in 2008, when I was told to immobilize the joint, use ice, etc. But I am seeing the discoloration and temp changes and burning pain. I've been documenting all of this along with a pain journal for my dreaded appt. with my primary CRPS doctor.

To Haywired, this dang condition of CRPS truly has a mind of its own and everybody has a slightly different story to tell. I believe that it is one of the most misunderstood conditions of the human body, even by health care professionals. Best of luck to you in figuring it out. We with CRPS are of course nervous of any potential spread to be sure, but not every malady/symptom that we experience is indicative of CRPS spread, many things can seem like spread, but they are not. So be methodical about it, get good care and do not hesitate to get multiple opinions if you feel necessary. Stay on it until you get the answer that is correct and the one you agree with and that you deserve. We are our own best (and often only) health care advocate!

Originally Posted by Becca71

When mine spread it just crawled up my leg with no discoloration or swelling. But the pain, burning, stinging, etc. was the same. The calf did get thinner than the other leg, and have the temp change, so we had some clinical change. The whole leg became super sensitive to any pressure, certain fabrics (no jeans...) and my lower leg can't handle flapping pants.
My right foot is the affected foot and my left foot randomly got the CRPS rash. But is otherwise fine. That was weird.

Originally Posted by CRPSbe

Mine spread, with the vice-like feel, the bad shoulders, the ice-cold sensation up one arm, the heat in the other arm and the heat up half of one arm (that had started going cold). My doctor started me on treatment right away (calcitonin), and thank God for that. I have to keep with the treatment otherwise it does creep back in.

Originally Posted by Hotfoot53

Wow CRPSbe, three years without knowing what it was sounds nearly as tough as it spreading! That must have been so difficult for you. I'm glad your doc is on it and treating it well now. Best, Hotfoot53

Originally Posted by CRPSbe

In those "almost" 3 years (1995-1998), it spread from knee to full legs + feet. It was too late to do anything.

Then after a number of years, in 2008 exactly it spread to my arms + hands. So yes, it does spread throughout the body, especially if it was left untreated a while.

Thankfully my doctor was "on it" when it spread to my arms. Before that other doctors weren't as... fast.

Sad, I know.