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.

I would call Dr. Robert Scwartzman in Philly, Hanneman University Hospital. He is the RSD expert, a neurologist. He's the Dr. you need

Hi and sorry to hear that you might have CRPS.

As you will see from other threads on here, there is a massive wait to see Dr S. in Philadelphia - anything between 3 years and 18 months so I would strongly suggest you don't go that route.

Do some internet research on the physicians more local to you - neurologists and pain management specialists (anaesthetists) principally diagnose and treat CRPS. I am sure that with a bit of research you will find someone who can give you a diagnosis either way. If your symptoms are progressively improving then it will probably be easier for someone to give you a definitive diagnosis earlier rather than later (whilst there is still something to see)!

The other thing to remember is that for many people CRPS apparently does improve and appear to go away on its own - I do know one lady to whom that happened. She had generally much milder symptoms than I did and over about 6 months or so, her symptoms lessened to the point where she would consider the CRPS to have "gone".

Remember that most of the stories and people posting on the net are the less lucky ones who are looking for support, information and a connection with other people going through the same sort of ongoing experience. The people who get better don't have a need to be here! Good luck with everything.

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!!