Originally Posted by love2laugh

First and foremost--
Remember YOU ARE IN CONTROL OF YOUR CARE.
Never let a doctor try to tell you otherwise.
You don't have to agree to procedures you don't want.
Its definitely OK to say and emphasize that you are in pain, and yet do not think a surergy, etc is in your best interest and ask for other options.
If your current doctor does not like it or treats you with disrespect, keep searching for another one. I'm on my 3 rd pain management dr.

As for my personal experiences....
Most of my physicians have heard of CRPS/RSD. The problem is, almost all of them have different opinions of "how" to best treat it. (My neuro-- who doesn't treat my CRPS/RSD is currently at odds with my PM who does ) Figure out-- and definitely ask them, their philosphy on RSD/CRPS, how they prefer to treat it, etc and decide if it meshes with your views. Not only in medical sense, but in a personality sense too-- you have to find someone you feel you can communication with honestly and without fear. Talk to their staff as well. Some people prefer going to a large teaching hospital, others don't. Some people prefer to be treated by a neurologist and others by a pain management specialist. I've tried all types, and have found that the teaching hospital enviroment is not for me-- I feel like a number and rushed. It doesn't matter, to me, if the doctor is a Neuro or PM. I'm currently seeing a neurologist for my epilepsy and a pain managment dr-- who's at a small clinic, for my RSD/CRPS (BUT in the past I've had a wonderful neurologist-- who diagnosed the RSD/CRPS and treated all my neuro issues ).

Also remember that each person's experience with RSD/CRPS is different. The RSD/CRPS in my pelvis/abdomen was "triggered" by surgery, however I've had RSD/CRPS in my legs for years, that went undiagnosed until recently. Hence, it has started to effect my internal organs and body systems. So, in addition to the neurologic and pain aspect of it, I have an autoimmune component to it. When one thing gets triggered, it sets of a chain reaction (example: when I have lack of sleep due to pain, the lack of sleep causes increased seizures, etc or when I get sick, it cause a huge in my pelvic RSD, triggering bladder issues, etc) and it gets to be a vicious cycle that somehow has to be broken. Getting doctors to understand that has been my one of biggest challenges (vs playing the "well, its the other specialists issue" ).

Hang in there !

L2L