Hi tjbird,
Welcome to Neurotalk. I'm so sorry your RSD is spreading. It seems most that get RSD has some spread. I have it full body now and also internally. Also agree with everyone above. Have fibro too. Yes the SCS is a spinal cord stimulaor. I would just say really check it out. I've read many negative accounts of ones getting worse with procedure. A some have been helped. I just attended the national RSD annual meeting. It as here in Scottsdale, AZ. Was so interesting. About 135 of us attended and then the next day was for medical personnel. There will be aDVD by the RSDSA association a little later. They say about 50,000 people every year get RSD. Education for diagnosis and just getting the name and symptoms out there is so important. It's a devasting disorder , as you know. It is a 47 on the mcGill Pain Scale. The most painful chronic pain disorder.
Keeping mobile is one of the most important things to me, so I keep moving as much as possible. Have a wonderful pain Dr. that is a neurologist, psychiatrist, and pharmacologist. I'm excited he is building two new clinics here with HBOT treatments. I'm anxious to try it. Others have had good success with this form of treatment.
I've been on here for a long time, but lost my password and somehow my posts got started over. I'm getting afull body bone scan next week. This does cause the bones to deteriorate. I had a neuclear med test on my hand when I was diagnosed 4 years after I got RSD following surgery. Physical therapy was h----, but I got full range of motion to both shoulders and partial to my hand. My therapy started real soon after the surgery and frozen shoulder. I've had probably 200 between the 3 areas. And more massage therapy than that. Swimming has keep my feet mobile and from turning and putting me in a wheelchair. Dr. was on the ball. Also, I attribute all of that to getting desensitized, as hard as that was. Most cities have pools like at the y etc. It's supposed to be 86 degrees or warmer.I even use the bath tub to do exercises on hands and feet. I use our pool in the summer, too expensive in winter to heat. We had company for a week from the west coast and we heated it for a week, the heating bill was $400! But we always do that for our company, they appreciate the break from snow and rain and we are close like family. It was a wonderful visit. We grew up next door together, lived together after high school and married best friends, our daughters are 3 weeks apart and real close too.
We moved from the west coast to AZ. for our daughters college and ended up permanent move. I found out after we moved, I had RSD.
You'll find a lot of support here. When I get to feeling a little bit better, I'll most some notes from the conerence on here that were very encouraging. Take care, loretta