Few doctors know about this disease, much less understand it. I “shudder” at any thought that you will be well served by the average neuro.

Mine has been unavailable due to illness for few months and in that time I talked to others in his practice. This experience leaves me worried, because my doc is very old. His colleagues knew nothing and kept referring me to another hospital, one that primarily treats children.

Fortunately, he recovered so I was able to see him this week. What a relief. He listed the temp variations found in my feet and hands, examined my limbs. He confirmed my “livedo aka LR.” In the 4 years I have been seen by other doctors not one took note of this, not even after I specifically asked about the web like pattern on my limbs.

I found him, only because pain management refused to treat my daily wake up migraines that are part of the pain symphony. I was livid that I would have to be treated by yet another doctor, but it turned out this doctor had recently studied CRPS and was well versed in updated CRPS info. I cried and sobbed with relief in his office the first time I met him.

You need to be very careful about the doctors you see. I was seen early on by a doctor who was at first pleasant and then suddenly became utterly horrible to me.

I had a classic presentation of CRPS, yet he could not diagnose me. I now know why. He is doctor who is a go to guy for the Worker’s Comp insurance companies. At the time I was seeing him he was involved in a CRPS lawsuit. Think about that. I had a classic presentation and he was in a CRPS dispute with another doctor, but he could not diagnose me.

My advice is join a CRPS FB group, ask for names. Send emails to known CRPS doctors asking for a list of local doctors who know about CRPS. Do not leave this up to chance, like I did. In the end I got lucky. Now I know better than to roll the dice.