Great Questions !

I have full body RSD/CRPS, but mine did not spread in a conventional type sense. Mine has gone internal per say. It started in my legs after last two breaks (broke both feet/ankle twice) about 5-6 years ago and slowely began to effect my autoimmune system and body's abilty to regulate itself shortly there after. My leg pain was originally diagnosed as just allodynia/neuropathy. Then in 2008 I had abdomninal/pelvic surgery which caused the RSD/CRPS in my abdomen and pelvis and sparked a bunch of other problems. A very knowledgable, great Neurologist diagnosed that within 6 months of the surgery, and further diagnosed my legs several months after that. After the Pelvic Surgery my autonomic system completely went haywire. My body is unable to regulate its heart rate, tempature, etc.

Unlike a lot of people, I am not afraid of surgeries, needles, etc and it spreading. I've had 4 surgeries since the diagnosis, multiple injuries, countless needle sticks and, with my pelvis, injections directly into the RSD/CRPS site.

My main concern is when I get sick or have surgery or complications from my other medical problems, it can either 1) set off an RSD flare or, if I am flaring 2) trigger cluster seizures. Both of those can aggravate my other issues and its a vicious cycle.

Do I chalk everything up to RSD/CRPS ? No. Thats because I've learned and dealt with nerve pain and "regular" pain . When I made the mistake of getting back into gymnastics a few months ago and injured my feet was it RSD related ? Nope. It was a soft tissue/tendon injury. (It Did teach me that RSD/CRPS and gymnastics may not be compatable though ) . Is the pain I am experiencing in my ear right now related to RSD/CRPS ? Nope--- I had Ear Surgery last week. But, the RSD/CRPS is making the pain worse and its taking my body much longer to heal and recover.....

The frustrating thing about having internal/full body RSD/CRPS is that no one wants to take on the responsibilty of treating it all. So, I have to treat each body system with separate drs. Pain Management will treat the pain. Cardiology manages the autonomic Dysfunction. Neurology Manages some of my pain meds (because they are also used to treat my epilepsy). Gyn treats the pelvic problems and sometimes does injections. My PCM tries to keep me from getting sick (or does damage control when I get hurt, lol ) ....

Just my experience ....

L2L