i had a SCS put in about a year after being diagnosed with RSD... the trial worked great for me, however the perminant one caused my RSD to spread and then failed to give me the pain relief afterward. Needless to say I had it removed about a year and a half after having it implanted.

If you scroll through a couple pages of topics on here there are some surveys I posted from a bunch of different people with RSD that i took for information for a paper I was writing (That as well is posted on here some where). But one of the questions on there asks about the treatments/medications they've tried. That may help you out some.

Hi New and Lost Jennelle,
Welcome to Neurotalk and a large family of compassionate, informtive, and friendly group. I have learned so much here, and hopefully have encouraged others. I know I don't feel misunderstood or alone. Most of us had no idea what RSD was or how our life was going to change. Sure, we all miss our good health, but have learned many ways to cope with disabilities and pain. I agree with all the above comments regarding SCS and Sympath.
I have been helped by physical therapy and massage therapy. I had frozen shoulder following surgery (really rsd, but wasn't dianosed for 4 years) Started therapy right away to get use of my left arm. took 100 massage therapies followed by 100 p.t. I paid for the mass. therapy, felt it would loosen up and help speed up recovery of range of motion. I never regret that. I have full use of arm. Then a few months of relief followed by sudden frozen shoulder in right arm. (They told me that might happen) More therapy.
Full use of right arm. Then left hand frozen from injury while water skiing. Wrong diagnosis. Changed Drs. and diagnosed with RSD in different state. Started therapy in hand and got partial use. It's permanently partially paralyzed. Have full body now. Both feet started to turn upwards, toes. Dr. had me start water therapy and in a few months, my toes were touching he ground again. My Dr. is a neurologist, psychiatrist, and pharmacologist, so he basically manages my pain and rsd.I've been seeing him for 5 years and it was this smart Dr. that told me my rsd started 13 years ago following my benign breast surgery. The next day my arm swelled and shoulder froze up. Not even the Rehab Dr. and physical therapists recognized the rsd. We desparetly need rsd education in this country. Every state needs new laws passed. I attended the national rsd annual meeting here in Scottsdale last week. There are 50,000 new cases of RSD being diagnosed every year now!! We can't afford for people to have 4 years pass before being properly diagnosed. More and more children and teenagers are getting it. If you go for water therapy, the water needs to be at least 86 degrees. Cold water is not good for us or ice.
I'll pm you an evening when I'm feeling a little better and share more information that has helped a lot of us. At the top of the page is a 4 page list of suggestions that Mom in Pain has started with a lot of good suggestions from different ones that has helped us deal. You can also read the introductions to learn more about each one of us. It takes time, but the more you can read, the more you can learn what helps us and avoid things that make our condition worse. I'll post some information about the annual conference soon.
Please take care, loretta

Jennelle,
hello I'm also one here who has had a sympothectomy done to me also and I live in pain still even worse on some days! I also asked for help with anyone who had a sympothectomy done years ago and no one had any answers for me. I can say please do not do it! I did it cause at the time I felt I had no choice and the pain so great as I was left for months and months without treatment as I was in work comp hell ! as some here understand how we get mistreated in that system I think worse at times... I regret what I did as it did not help me and now I have lost allot more as I do not sweat on that side anymore also and the sun burs me more also as well as losing motivation and some thing I cannot describe :(
DO not do a sympothectomy learn fro me too!:mad:

Dear Loretta

I have been keeping an eye on the RSDSA website for any information that may have come out of the Scottsdate conference - especially new treatments recommendations. Hopefully it will be published soon.

Sandy

Hello Jennelle,

Welcome, you will find a lot of knowlegable people here who are helpful and care.
It takes a great deal of time to find and assemble a medical team that you trust. Most doctors have heard of RSD and know enough to know it's complex and the same treatment plan doesn't work for any two people. We all have different nervous systems and RSD acts different for each one of us. Doctors are intimidated by it, after all they are in the business of helping people and this condition makes it hard to help you. I have a PM doc, chiropractor, pain management doc, physcologist, allergist (without medication my body itches out of control wherever pressure is applied) cardiologist (RSD effects my heart rate a very very small % of open heart patient get RSD)
I went through 17 doctors over an 8 year period.
So your medical team will have many doctors on it who should understand RSD.
I read somewhere early in my DX (I have only had RSD for 8 years)
Just as patients get frustrated with doctors because they can't help, doctors get frustrated with a patients health and their inability to treat them. My GP doc. gave me the never quit never give up speech. Several months later I was having trouble with my meds working together. He walked in the room the first thing he said is "I'm through we aren't doing this anymore". I left the office in tears because, up to that point, I really liked his approach with my health. After I cooled off I went home and wrote him a letter. Telling him he couldn't give up on me and he couldn't quit. I reminded him of his pep talk with me the first time he saw me. He called me after he read the letter. We laid out our expectations and agreed he was having a bad day that day. He has been treating me for the last 6 years .I have also had disappointing appointments with my pain management doctor. Keep the communication lines open. That's what it takes in any relationship and that's what is really needed when you are living with and trying to get help managing a complex health conditon like we all have.
I had a SCS for 2 1/2 years. It stimulated my arms, legs and low back (I have full body RSD). The programmers from the the manufacture couldn't get it programmed. Ask for it to be explained to you how they program it and how many hundreds of combinations there are. The last year and 1/2 it was in I didn't even have it turned on. I was having awful low back pain and all my doctors agreed it should come out. My low back pain has improved since it was removed.
Sorry to ramble so, I hope you get some information from us that you can talk with your doctors about.
Take care,:grouphug
Sherrie