Hi momzpeachy,
I am so very sorry you have full body. I remember how scared I was when I was diagnosed full body. My neurologist suggested I see a psychiatrist. I knew I needed help to adjust and cope with this overwhelming feeling. RSD already is difficult because of what it does to our memory, grasping for words while talking, difficulty in making judgment decisions.I didn't like the 2 names I was given, so I found the most amazing psychiatrist in the yellow pages. He also was a neurologist, & pharmacologist from New York and studied at Cornell. I made an appointment and immediately knew this was the man I could trust,and respect. I have been seeing him once a month for 5 years. My husband and daughter have also been with me once.
I've had RSD for 14 years-it's been full body 8 years. I have one crippled hand, but thru therapy, it went from frozen solid to being able to bend the fingers partially, which I am so grateful for. At one time, my feet started to curl up off the floor. My Dr. had me get in the pool dailey and swim and exercise my toes. After 4 months, I had full use of my toes and they were touching the floor again. I've had two totally frozen shoulders, and thru about 150 physical therapy sessions, got full use back. I also on my own, did 150 massage therapy. Massage therapy, helped me get the use of my arms back faster. I still believe in massage therapy and stretching. Swimming is the best exercise and keeping us mobile. The water needs to be 86 degrees or warmer. The YMCA is a low cost way to get your exercise. The pool has literally kept me mobile and out of a wheel chair. I'm 61 and am so grateful for the direction from my Dr. and family. We live in Arizona.
My Dr. manages my pain and RSD. There is a strong connection between pain level and lack of restorative sleep, and pain level and anxiety. So he put me on lorazepam 2 mg. 3xday. Pain med is Vicodin 5/500 I take 2 tablets at a time 3 x a day. Cymbalta 120 mg. is an anti-depressant that works well on nerve pain. I'm on 2 high blood pressure meds double dosed. Sleeping pill was ambien cr 12.5 mg. I was on neurotin 3200 mg for several years. I had violent electrical jolts, jerks, spasms. Changed that to Lyrica 400 mg. But I gained 60 lbs. (had always been thin) I felt the weight gain contributed to high blood pressure) So my Dr. let me go off gradually and I lost 30 lbs right away. Was able to lower one of my blood pressure meds. I felt clearer in the head. In the last 7 months I've only had a couple light jolts. I'm working on the 2nd 30 lbs. and still feel I'll be able to lower blood pressure med.
For weeks and weeks my Ambien was useless. Wouldn't get to sleep till 5-6 a.m. and sleep till noon-1pm. Life was just passing me by. My Dr. was doing a study for a pharmaceutical company on seroquel. On higher doses, it's used for bi-polar disorder and schizophrenia. The study of 200 patients was for a low lose for fibromyalgia, which I have. So he switched me to seroquel 300 mg. I was to go to bed for 3 days. It felt strong. But I slept 9-10 hours. Took it at 7pm and slept from 10-11pm to 8 .a.m. Felt wonderful to get that restorative sleep. He lowered my lorazepam from 6 2mg. a day to 3 1mg. or cut in half and sometimes I only take 2 a day. He left the vicodin up to me. I was on 6 5/500 pills a day. I took 2 at a time 3x day. And I went down to2-3 pills a day. Because of the restorative sleep, my pain level is way down and my anxiety is down too. It's amazing.
I've got the flu right now so am in a flare. 102 fevor etc so I'm back on full
dose meds.
If you don't have a YMCA pool, some local resorts may allow swimming for a small fee or even free. Sometimes Easter Seals have pools. Also the city recreation has pools and classes you can sign up for, It is such good exercise and a way to connect with people.
I got RSD the day following breast surgery. My arm swelled up at least double it size. couldn't move my arm or bend it. It became frozen. My surgeon went on vacation and his partner withdrew excess liquid, which was lime green (meant infection) but of course no one mentioned that. Sent me off to a rehab Dr. for overseeing physical therapy. Took 100 treatments, and I went to massage therapist just before the torture of pt. Even the massage therapy was torture ( which I paid for) I took pain med and then they would strap me down. But I got the use of my arm back. We then were getting ready to move to Arizona for our daughters college. The pt told me not to be surprised if the other shoulder froze up. That sounded strange to me. After a year in AZ, guess what, my other shoulder froze up. More pt and massage therapy. cortisone shots. Got most of my arm back. Then another year of remission, still no diagnoses. Was water skiing and felt a pull in left hand. RSD used to be called hand shoulder syndrome. I was diagnosed rheumatoid arthritis, that didn't make sense as my tests were good. So I flew back to Oregon to a sports injury group. The hand specialist looked at me and said I think RSD-had tests at hospital and it was confirmed. Came back to Arizona with a Tens Unit and more therapy. Because of the delay, my left hand is like a claw, only partially usable. But I'm very grateful, can cut my own food.
Physicall Therapy is extremely important to keep joints moving and from freezing up. Sports Injury Doctors in my Opinion are great.Eugene, Or has the University of Oregon there so a great group of Drs. Scottsdale AZ has Diamond Back Baseball Team. That's who I went to to oversee my right shoulder and I had the physical therapist who had just come off the pga tour and started his own therapy business work on my right shoulder.
We have two mayo clinics here and the ketamine study was done here with Dr. Swarztman, Dr. Harbut, Dr. Correll and others.
My Dr. just finished building two clinics and each of them has a hbot in them. When we get on our feet financially, I'm going to try the hbot. Hope to take several sessions and then weekly maintenance.It's just 5 minutes from our home.
SLEEP IMPERATIVE, CALMNESS-Anti-Anxiety MED< Bio-Feedback helps with calmness, Meditation, soft music, essense, candles Whatever we can do to make our own endorphins work, exercise, stretching, swimming, being around positive, calm family and friends. It's not easy, was the days in which we live are hectic, stressful, confusion, etc. But as far as it depends on us, be peaceful and try and surround ourselves with calmness.
How are you affected internally? What are your symptoms for internal RSD. I believe I have internal issues.
I'll be thinking of you and hope you get the help you despartely need.
Take care, loretta soft hugs