Hi sarah m and welcome to our friendly group.
I'm so sorry you have RSD. It's so good you are able to have p.t. and the desensitizing too. I started that right off, even though it was 4 years before I was diagnosed. I've had this 13 years and now full body. About 5 years ago, I found a great Dr. neurologist, psychiatrist and pharmacologist. See him once a month and he manages my meds. I switched from neurotin to Lyrica and felt I got better pain relief with Lyrica. Was on 3200 mg of neurotin and 400 of Lyrica. About 8 months ago I went off gradually and my electrical jolts, spasms, and shocks did not come back. There is a part called puzzzles that are questions and answers from different patients. I almost went to him when I found out I had RSD, but found a good Dr. here.
My neuro-pychiatrist just build a couple of clinics with hbot in them and I'm going to try the hbot soon. I've talked to a couple people that have a unit in their home and they are off their meds. One is on this forum and one I met at the annual RSDSA meeting a couple months ago here in Arizona. I'll let you know how it goes. Take care, loretta
I had CBT after my parents died for 2 years and helped me a lot. Also had biofeedback for migraine headaches. I still use it for RSD. I just wanted to say a neuro-psychiatrist is a wonderful combination. Like all of, the adjustment from being healthy and active to high pain, disability, for my partially crippled, depression, anxiety , I was helped soooooo much by this Dr. I am on an anti-anxiety med. lorazepam that I feel helps me keep the pain levels down by keeping the sympathetic nervous system calmer. RSD affects the Limbic part of brain, so depression is common with most of us. Antii-depressants are used because of their effectiveness in nerve pain.
I never had any of the blocks, as I was misdiagnosed, and then correctly diagnosed 4 years after the surgery the brought on the RSD the following day.
I did try accupuncture, but couldn't handle the pain.
Massage therapy was something that worked very well for me. I had 150 treatments right along with the p.t. actually just before the p.t. to get further along with the p.t. My private insurance didn't pay for it, but felt it was really helping me and still get massage therapy, but not as often.
Swimming has literallly kept me walking and mobile. My toes started to curl off the floor and my Dr. had me dailey exercise while swimming, working on my toes, and also massage therapist working on my toes and after a few months, they were back touch the floor and walking. I live in Arizona, so a pool is wonderful therapy to keep everying loose and moving.
Welcome again to our family. There is information on a website from a retired Dr. with lots of experience. www.rsdrx.com I don't know how I got this mixed up, but don't know how to get it straightened out. Sorry, Your friend, loretta