Hi Gravyboat and Welcome to Neurotalk,
You'll find so many caring, knowledgable, friends here. Please know we care for each other and are so sorry you have this diagnosis. It is good you good early diagnosis.
RSDSA-the national organization for RSD is great site for information. They had their annual meeting here is Scottsdale, AZ this year. It was wonderful to attend. You can go to their website and put in your zip code and you'll receive a name and phone number for closest RSD support group support leader. Our's meet one's a month, and this Saturday we had a RN speak on anti-oxidants and superfoods and importance of healthy diet. Another good website is rsdrx.com Under Puzzzles List is 146 questions about RSD and Dr. Hooshmands answers. He is retired, but this website has a wealth of good information.
I have had RSD 14 years and wasn't diagnosed for 4 years. But because of frozen shoulder following surgery, my surgeon sent me to rehab Dr. who supervised physical therapy for a year to get range of motion back. I also did a year of massage therapy just before p.t. I went in remission for a year plus then got frozen shoulder in other shoulder= more therapy and massage another remission another year or so. While water skiing pulled hand. Misdiagnosed, knew I didn't have rheumatoid arthritis-negative tests so went to a good sports injury group and saw the orthopedic hand Dr. who diagnosed RSD in 1 minute. nuclear med tests at the hospital confirmed it. Started me in physical therapy next day and tens unit. Came back to Arizona and found good neurologist and orthopedic hand Dr. more confirmed tests and physical therapy along with desensitization. Densesitization is VERY important. In addition, at home I took 6 plastic bowls and put cotton balls, coffee grounds, rice, beans, sand, & pieces of cloth and run my hands and feet thru the bowls. This is so important.
When I was diagnosed full body my neurologist suggested seeing a psychiatrist. I didn't like his two recommendations, so found a wonderful Doc in yellow pages. He is a neurologist, psychiatrist, and pharmacologist. I have been seeing him for 5 years and he manages my pain. I wasn't sleeping well at all, and that is extremely important. He was doing a 200 person trial study for a drug for fibromyalgia, which I also have. As an additional benefit, restorative sleep was a huge blessing. 87% outcome!!!! I started sleeping 10 hours and felt like a new person. I cut my vicodin in half and he cut my anxiety med in half. I'm in my 3rd month. When my toes started curling up off the floor, he had me exercising dailey in our pool. In 4 months, my toes were touching the floor again. So, I'm mobile, with the exception of one hand when I was water skiing, partially paralyzed-misdiagnosed and didn't get physical therapy soon enough.
For me, counseling was very helpful. It's a huge loss in your life, and I needed to grieve and learn tools to deal with the pain and loss of former life.
I use music, meditation, prayer, visualization, deep breathing, biofeedback, swimming, stretching, scented candles, journaling, reaching out to fell rsd friends here, and my family and friends. I tended to isolate myself early on and that for length of time is unhealthy. I am hoping to start traveling again. Short trips at first. I'm building up my stamnia.
Keep moving- read read read-Swimming water needs to be 86 degrees. For me, it was one of the best exercises. I still use massage.
Hope the best for you, you are in charge of your health and in charge of finding a good Dr. That's why a local group many times are aware of who is active in RSD and who is not. I'm forever grateful, I flew from Arizona to Oregon to the sports injury group and got my diagnosis. Most large cities that have national sports teams also have excellent sports Drs. When I came back from Oregon to Arizona, I found the physical therapist that had just come off the PGA Tour and opened his own business. Also used the Diamondback Ortho Dr.
Please keep in tough and let us know how you are-we care, loretta soft hugs