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Originally Posted by catra121
When mine spread it was the same burning pain and sensitivity to touch...but a lot of the other symptoms came and went and were not as severe as the initial location of the CRPS. Part of that I think is that I knew what to do for it and was getting treatment for CRPS already. For example...I feel like my initial site of CRPS progressed worse, faster because they had me treating with ice and doing other things that just were not helping and actually make me worse. When it was spreading...I was more knowledgeable and knew not to ice and all that.
Even still...I had so many tests done and saw so many doctors to confirm that it was in fact CRPS spread...because there were other things that were affecting me as well that were contributing to problems I was having (seratonin syndrome being the big one from my meds). It's very easy for us and for some doctors to just say, "It's spreading." But really there could be other stuff going on so you never just want to take for granted that all new problems are related to CRPS...because they could be treatable and easily fixed.
I hope you find the answer soon. Take care and keep us posted.
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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!