Hi RN Mom, I've had RSD 15 years, fibromyalgia and Trigeminal Nerve Pain. I take 4 vicodin, 4 Lorazepam , 120mg Cymbalta, 300mg seroquel xr 300-for sleep- used to take ambien cr, but stopped working and I couldn't sleep till about 5,6 a.m. My dr. put me in a 200 person study. It helps with fibromyalgia and sleep 10 hrs. I'm also on 2 high blood pressure meds-diovan 160 mg. and metoprolol succ er 50 mg.
I used to take 3200 mg of neurotin for electric jolts -full body and spasms, then tried lyrica 400 mg. they both worked in stoping the dystonia. But hated the weight gain and brain fuzziness. I gradually went off and didn't get the symptoms back. Been off 2 years now. Also was on two anti-depressants, paxil and wellbutrix, double dosed, but went off andjust on cymbalta. I current rsd dr. for the past 6 years is really like. He is a neurologist,, psychiatrist, and pharmacologist. Then I went off ambien and on the seroquel, besides sleeping so well, I was able to go down in vicodin and lorazepam by 2 pills each per night.Used to be on 6 each.
He just built two clinics and I plan on trying his hyperbaraic oxygen treatment chambers. He has had excellent results on other patients. We are in Scottsdale,AZ.
I have had a lot of physical therapy and massage therapy. I'm mobile with the exception of a partial use of left hand. Delayed diagnosis and therapy. I
m very cautions with my diet-high antioxidant foods. fresh fruits and veggies. Mostly vegetarian with exception of salmon and scallops.
Cymbalta works well for nerve pain. My Dr. would rather me be on a variety of meds that work on nerve pain and lower doses of narcotics. Also the Lorazepam-anti-anxiety med- lowers anxiety, thus lowering pain.
I'm sorry you are having a rough time. How old are your children? We have 1 daughter-married and wonderful son in law. She was 15 when I got RSD. But I went into remission twice for a year, Wasn't diagnosed for 5 years-about 3 months plus months after her wedding. We still miss many of the things we used to do together. But her husband is athletic and loving to do the same things and travel too. My husband has been so good to me-not at the beginning. He along with others didn't know what was going on, including myself. They both went to Dr. with me, and did a lot of research themselves.
I think that is so important for marriage mates, and older children. It's tough when they think you should be doing more, and you can barely get out of bed.
I attended the RSDSA annual meeting here in Scottsdale this past spring.
I know Medthodone was talked about in a good light for RSD. My Dr. however, doesn't want to see me go above Vicodin. And Vicodin 2 at a time, works well for me. I can drive after 4 hours and before taking my late afternoon meds. So I'm happy I can be partially mobile-driving. I take it seriously, not driving after taking meds.
Please let us know how you are, and what Dr. says. Your friend, loretta with soft hugs
