Hi Texas Athlete,
I can imagine as a young person, the devastation of the prospect of losing your health in this way. I do hope for remission for you. Younger people have a better chance of remission-don't remember where I learned that. Even though I wasn't diagnosed with RSD for 4 years, I did start physical therapy immediately after having surgery with resulting frozen shoulder. I also did massage therapy weekly before pt. I feel the massage therapy, though painful, was good for me. It warmed up my muscles to make the pt. go better.
I did go thru 3 remissions of each over a year. The remissions were wonderful. The RSD that started in left shoulder eventually moved to right shoulder. More pt and massage therapy-eventually a 2nd remission. Then while water skiing, felt pull in left hand-misdiagnosed-went to a University Town-Eugene, Or and went to the sports injury group of Drs. The hand orthopedic Dr. diagnosed me in 1 minute. Tests confirmed. Started in pt and he ordered Tens Unit. Came back to Arizona and found neurologist and Hand Ortho. both confirming RSD. Started pt and massage therapy and a BIG IMPORTANT Part of the ortho therapy was desensitization. My hand was put in warm glass jar with warm air whirrling sand around. Then both at pt and at home I had 5-6 plastic bowls filled with cotton balls, coffee grounds in another, pieces of fabric, beans, sugar, just anything of different textures. Putting your foot in each of these bowls are good for desenitizing your nerves. Because of delay of treatment my hand didn't recover completely. My fingers are curled like a claw, but they aren't sensitive anymore. I can cut my own food, peel potatoes, drive my car with both hands etc. I did have another remission of over a year, but moved to right hand, both feet, full body, called generalized RSD and now internal RSD and affecting scalp with lesions, rashes.
I belong to a local support group in Phoenix, AZ. The annual RSDSA meeting last year was here in Scottsdale. 128 attended Sat. then next day was for Drs.
Because RSD is an autonomic condition, meaning affecting our involuntary organs like regulation of our body temperature, both hot and cold. regulation of involuntary organs like heart, lungs, blood pressure and go both high and low. Too low can cause dizziness and passing out. And the third area is our immune system. An excellent website is rsdrx.com puzzles list Dr. Hooshmand practiced 40 years in Florida, mainly RSD and recently retired, but has website up. The puzzles are actually question-150 and his answers. Very Good.
RSDSA is a national organization. If you put your zip code, they will tell you closest rsd support group.
When I was diagnosed full body, my neurologist suggested seeing a psychiatrist to help deal with the life altering disorder. I found the most wonderful psychiatrist who also is a neurologist and pharmacologist. He brought me out of a big black hole. This life altering disorder is like a death-grieving over the loss of good health, the sports that you love, your dreams of a healthy life-and who knows may still be possible if you go into remission. Those that get therapy the first 6-12 months have an advantage of remission. Even a grief couselor would be good. After my parents died when I was 25, I had a wonderful couselor for 2 plus years.
I'll still seeing my psych- 6 years now. I'm so grateful to find such a gifted Dr. He put me on a 200 person trial study and I'm sleeping 10 hrs a night, and before I couldn't hardly sleep at all. I haven't been on anything stronger than vicodin. Because RSD affects the Limbic part of your brain-that affects anxiety-depression. I'm on an anti-anxiety meds called lorazepam. When I first got this I couldn't understand my anxiety and panic, as i never experienced that before. But RSD causes that. I'm on Cymbalta, an anti-depressant, which works on nerve pain. I had spasms, electric shocks jolts, thru my whole body, thru my brain, would raise my head off my pillow while sleeping. My Dr. raised my neurotin to 3200 mg. and they stopped. I did try Lyrica 400 mg. but gradually went off the anti-seizure meds and it is very seldom I have a spasm, nothing like before. This drug does cause weight gain. I'm now working out with 1 lb weights and other exercise to lose the weight and tone up again.
Since gradeschool,I was in track and field, thru middle school and high school. State medals and National. trained at U OF O Hayward Field while in High School. I still miss water skiing, snow skiing, used to play tennis 5=6 days a week. My daughter and I won a doubles tournament just before I got RSD. The US OPEN starts soon and we attended 12 days one year. I guess you could call us fanatics. One of our family trips was the Indian Wells, Ca. tennis tournament every year.
I know you have a chance at remission. Have you ever checked out HBOT -It's Hyperbaric Oxygen Chamber like the deep see divers go into. It promotes circulation. My Dr. has two clinics with HBOT in each of them.
He had another neurologist call him and asked my Dr. to treat his patient in the HBOT. She was driving on the freeway and was in an accident. A car hit the metal fence and one of the metal poles became a missle and went thru her windshield and impaled her thru the shoulder into the back of her seat. After her surgery, to help her regain range of motion, she was treated in the HBOT and after 6-7 treatments she was waving to the TV station camera crew with her arm after getting out of the HBOT.
I have full range of motion ,except my left hand, due to my Dr. My toes started curling up off the floor. He had me get in my pool (water needs to be 86 degrees) and while swimming curl my toes. In 4 months, my toes were touching the ground again. I never missed a day and am no grateful I can walk. YMCA I believe keep their pools warm, Swimming everyday is one of the best forms of therapy. Epsom Salt Bathes are good.
As a young man, it's natural to want to be like every one else and how you used to be. Please don't give up. Do as much research as you can. Please try the desenitizing-light massage.
I'm 62 and young at heart. I hope with all my heart you can find a way to go into remission. One of your new friends on NT, loretta