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Originally Posted by jrsygrl
Hello Everyone,
I broke my foot recently and my treating dr. has brought up the possibility that I may have RSD/CRPS ( he does not regularly treat people with this condition though). I definitely exhibit some symptoms however other things make me wonder if something else may be the culprit. In fact my pain has gotten much better (progressively every day & I use no pain killers); I am able to sleep now at night and everything. Issues are on/off mottled discoloration (every day, sometimes extreme), nerve issues & I did have the extreme pain as described in the list of symptoms which he ignored at the time it was occurring (unable to sleep even with heavy duty pain killers). I would like to actually see a neurologist who specializes or has heavy RSD experience to obtain a final Dx. Given how often patients are told they don't have this condition when in fact they do, I want to feel confident that the neurologist has the ability to either negate or confirm the Dx, especially since I understand how important time is.
I am having a lot of trouble however finding a neurologist in NJ who is knowledgeable le in RSD. Is there a neurologist in NJ that is competent enough in RSD to make this diagnosis? This would be an early stage diagnosis as well. Thank you in advance for your help and I wish you all the best.
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Hi there!! While I certainly hope you do not have CRPS/RSD, while you're waiting to be diagnosed or seen by a specialist, I would document all of your symptoms briefly in a calendar journal and try to take pictures when possible. For some reason, my foot ONLY gets hot at night (when the doctors can't feel it) and it only turns colors when I am standing. The swelling comes and goes and can change moment by moment.
I try to keep a picture diary of what has been going on with me since I was last seen (with dates/times written on the back) in a binder that I take with me to all my appointments. This may sound kind of extreme, but I feel like it's been useful to be able to show the doctors how swollen my foot can get at times, even if it happens to not be right at the moment of the appointment.
My experience is that the symptoms for this disease tend to fluctuate depending on your mood, the time of day, your fatigue level, and heaven knows what else. This could be a good way to keep track of everything that you may otherwise forget during an appointment.
I wish you the best and hope that you get the appropriate care QUICKLY. I have only had RSD for a month, and have been diligent to get in to the appropriate docs to get treated early (as is recommended). I consider myself to have a "mild" case too (meaning it's only in one limb and I can
usually tolerate the pain without bashing my head against the wall) but am determined to go after it aggressively to KEEP it there. RSD is NOT a wait and watch kind of disease. If you've got symptoms and you get diagnosed......go after it full force.
Keep us posted on your progress!!