Hi Kim and Welcome to Neurotalk,
I am so sorry you have RSD-you will find many compassionate, kind, and educated friends here.
I have no knowledge of WC, but know it's important you get long term compensation. This is a very expensive disorder -meds, tests, over the years. Many get an attorney and feel in the long run, it's worth it. I believe in getting a specialist in any field, WC attorney, RSD Doc etc. Some states have an unlimited time for compensation for your work injury-in other words lifetime medical. Science is coming up with new things all the time. The national organization for RSD is RSDSA. They had their annual meeting here in Scottsdale, AZ in the spring. I attended. I do know they had a DVD made of the meeting to be made available to all later. 135 attended Sat. and Sun was for the Drs. and professionals. By going to that site, you can put your zip code in and get the name and phone number of a support group closest to where you live. We have a meeting once a month here in Phoenix. We have RN's , nutritionists, pharmacologists, drs. speak. Very encouraging.
I personally could not tolerate having a Dr. that doesn't show respect or compassion to me. I've had this 14-15 years now. Full body and internally. RSD is an autonomic disorder, meaning it affects the involuntary organs, like heart, lungs, bladder, colon, circulation, blood pressure.. Besides high blood pressure, we can get low blood pressure, which we can pass out from. I usually have high blood pressure on 2 meds, but woke up one morning and passed out-low blood pressure.
My family did some research of their own, and are compassionate. I know it's been a loss for them too. We were such an active family. Thankfully, our daughter was 15 when I got it following surgery. I had a lot of physical therapy and massage therapy, densitization is very important! I had a good orthopedic hand Dr. Was misdiagnosed so have a partially paralyzed hand.
I have a neurologist, psychiatrist, and pharmacologist. I call him my 3 in 1 Dr.
I'm grateful to be mobile, Insomnia is an issue with a lot of us. My Dr. did a 200 person trial study on seroquel for it's affects on fibromyalgia, which I also have. It had a positive response on sleep issues. I take 300 mg and sleep 10 straight hours of restorative sleep. Because of good sleep, I was able to cut pain meds in half and anxiety meds in half. When I have a flare, I have to go back up.
Dr. Hooshmand, a retired RSD DR. from Florida still has his website up. rsdrx.com Under Puzzles List are 146 questions with his answers. I think it is very good.
I'm so sorry you have this- You are welcome any time to ask me any questions. PM means private message. Take care of yourself. I'm on a high anti-oxidant diet. stretch, as much as I can do.
Oh, the desenstizization is get about 6 bowls-put cotton balls in one, rice in another, sand in another, fabric pieces in another, coffee grounds in another. Run your fingers-hands in each one-feet-toes in another one. And just go thru them so you get used to touch. It will help you in the long run.
Distraction is a huge help. Music, scented candles, journaling, reading, meditation, prayer, visualization, biofeedback. I had frozen should twice-physical therapy and massage therapy helped me a LOT-I'm mobile because of it. Have a tens unit too. It was 4 years before I was diagnosed. But I did go into remission twice after each frozen should treatment. I took 100 treatments each-physical therapy, massage therapy. When I have a blood draw, I get a butterfly draw-small needle. Before dental work, take anti-biotic, laughing gas, take a lorazepam to relax.
Take care, I'm 61 married 42 years, 1 daughter 30 married, wonderful son in law. and glad we moved from Oregon to Arizona. I'm, like most others, are affected by the weather.
I'd encourage you to read read read, and we deserve respect and be treated with dignity. I've dropped a few Drs. for not observing those basic principles. Your friend, loretta soft hugs