Hi Suz and Welcome,
It's good you are reading a lot, The part called Introduction is real good at the top of this forum. I went into remission after a year of physical therapy for frozen shoulder. It came following breast surgery. Besides physical therapy to get range of motion back, I did massage therapy. I didn't know I had RSD for 4 years. I got full range of motin back and stabing pains went away. But my pt told me it might go to the other side. I thought that sounded odd, but I was happy I had most of range of motion back. Well, after I was well and recovered, it did move to the other shoulder. We had moved from Oregon to Arizona, so I found a physical therapist and massage therapist . Also went to a orthopedic surgeon who gave me cortizone injections. Got almost full range back again and I was in remission. (still no one had ever mentioned rsd) Had another year with no symptoms. Then was water skiing at the end of summer, and felt a pull in my left hand ,swelled up. Went to a Dr. and he diagnosed me with Rheumatoid Arthritis. Was on meds, but didn't get any better and it didn't make sense, because I didn't have the RA in my blood test. Went to Oregon to Orthopedic Group and in 1 minute the hand specialist said I had RSD. He sent me for neuclear med test and was positive for RSD. He orderd a Tens Unit (which was good) and started therapy back in Oregon. Came back to Arizona and found a neurologist, that did more RSD tests, confirmed. Saw a Orthopedic Hand Specialist and he confimed RSD and oversaw my pt next door. RSD used to be called Hand Shoulder Syndrome. My Hand was frozen straight as a board. Thru a lot of therapy, I only got half use back, thanks to the delay of the first Dr. I went to after the ski accident.Something good they did in therapy was desensitization. They run your hand thru different textures. I did it at home 7 days a week also. You take maybe 7 pastic bowls and fill them with different things. Like cotton balls, rice, sand, beans, popcorn, You run your hands, feet thru the different textures and you get de-sensitized. I also did stretching at home. When I began p.t. in Oregon they gave me a cylinder about8-10 inches in diameter and about 5 ft long made of styrofoam. You lay on it with your arms stretched out and roll back and forth. It stretches out your muscles,nerves in back. Helps keep your range of motion. My opinion is physical therapy and massage therapy are huge in the recovery of RSD. But not overdue. Another is swimming. The water needs to be 86 degrees or warmer. There are public pools, ymca, health clubs, I have a heated pool in back yard, and it has literally kept mobile. My toes started to curl up off the floor and my Dr. I've had for the last 5 years had me start right away with therapy in pool and curling my toes. I also did it in the bath tub first thing in morning. After a few months, my toes touched the ground again.
I have full body RSD. After the water skiing thing, it also went to the other hand, then down to one foot and then the other foot up the legs. I have a lot of skin rashes and have had a couple of lesions.
In my opinion, it imperative to keep calm- not anxious. My Dr. has me on a low dose anti=anxiety med -lorazepam I do get flares, when sick, sinus infection, extra stress. I personally feel couseling is good. My Dr. the past 5 years is also my PM Dr. He is a Psychiatrist, Neurologist, and Pharmacologist. I also take a lot of vitamins, and eat really healthy. Basically, am a vegetarian. Was on 3200 mg. of Neurotin to stop the jerks, electric shocks, spasms, etc. but gained weight, so asked my Dr. if I could gradually go off if my symptoms didn't come back. So I've lost 30 lbs. and have 30 more to go. I've only had a couple mild episodes.
To answer another question you had, Bio-feedback is a great too be in touch with your body symptoms and relax. A lot of hospitals have classes. I also use aromotherapy, scented candles, happy music, journaling is a wonderful emotional release. Do you have a local support group. You can go to RSDSA and type your zip code it, and they give you a name and phone number of a contact person. Another site I've learned a lot from is www.rsdrx.com Dr. Hooshmand is retired now, but site is still up. Under puzzles, is about 140 questions from patients and his answers.
Visualization is good therapy, meditation, prayer. I keep in touch with good friends in Oregon, Washington, We have visitors every year. We only say yes to those we are close to and it's a wonderful time with friends, not stressful. We don't feel we have to 'entertain'. The ones that come and visit, really just want to lay around the pool and read. They cook for us-that's a switch huh. We have 4 bedrooms and 4 baths, so everyone has privacy and I don'[t get up until I feel like it.
I hope something I've said helps you. I'm going to read a motivational book by Michael J Fox called Always Looking Up It's about his trials of coming to terms with his incurable disorder. Dr. Hooshmand also has written books about RSD. He is retired now.
I wish you well, and hopefully a full remission. It DOES happen, I haven't increased in meds, in fact have decreased, and don't have spasms anymore. The depression is still there, but not as bad. I've gone from two double dosed anti-depressants to 1, Cymbalta. I'm not decreasing in pain med, vicoden from 6 a day to =4-5 Also since I'm losing weight, am decreasing high blood pressure meds. Wish you well- keep in touch, your friend, loretta