WOW, thank you for your advice and I am sorry it took me so long to get back with you- I spent the last couple of weeks in the fetal position or getting sick to my stomach from pain. Even the light fromy my computer screen hurt...you know how it goes.
So both the severity of this "flare/progression/development/***-ever" and the info in your post, I realize I really need to broaden the way my CRPS is being treated. I think because I have only been w/my PM for a year and he is still testing out all of the psychogenic factors and secondary physical issues that he is being a little conservative in his treatment. He also may have reached the end of his toolkit in terms of what he himself does to treat the disease. I had an appt with him and also with his psychiatrist colleague addressing my concerns related to this. I told them I was concerned that additional actual physical damage as going on (no one can go without food or sleep forever, right?) while we were tiptoeing around trying out antidepressants and extremely painful unsuccessful nerve blocks.
Don't get me wrong, I REALLLLLY respect my doctor. He is extremely smart and supportive and I am damn lucky to be his patient but I definitely want to see other specialists and pursue additional treatments. The info on your specialist in NY would be great.
I'm still a total physical mess right now but thanks to seroquel and morphene (the morphene for a week only), I am getting enough sleep to keep me from losing it. Seeing the PM and colleagues again in a week- they are taking me seriously I think so we shall see if that opens up any pathways to more treatments.
What do you do about the overall disability caused by your lower limb CRPS? Are you able to walk? I'm a horse trainer so I have had to be really creative (like ride a horse everywhere creative) and I'm looking for ideas or hope that some aspects of the actual disability will up and walk away some day...
THANK YOU THANK YOU!!