Hi Gymjunkie,
I think I've written to you via this forum about your condition. I'm sorry you continue to run into dead ends for help for your movement disorder. I've had rsd for 12 years and now is full body. The last 6 years it started into movement disorder, myclonic jerks--severe and violent. electric shocks and spasms. I don't have the extreme that you and Ali have-The jerks, shocks are totally under control and have light spasms ocassionally.My Dr. is from a prominent New York City Hospital and experienced in rsd. He is a psychiatrist, neurologist, and degree in pharmacology. My meds for the jerks, etc were neurotin 3200 mg a day. Was on that for 4 years or so and then decided to switch to lyrica after it was on the market for a while. I'm on 300 mg of lyrica-was on 400. It also helps better for pain level and fibromyalgia, which I have too. I'm on Vicodin for pain, Lorazepam-an anti-anxiety drug, sleeping pill ambien cr , one anti-depressant cymbalta 60 mg.
I went thru a rough time with depression and adjustment to this disorder. I was like you-so very active in so many things physical, the gym, tennis, water and snow skiing, biking, short runs 10k, swimming. I still enjoy swimming- it's the best therapy and has kept my feet and toes from turning, my Dr. gives me exercises. It was too late (before I found this Dr. and was misdiagnosed with RA rheumatoid arthritis for my left hand. It's like a frozen claw, permanent loss of range of motion for the four fingers and knuckles. So I work hard on keep my other 3 limbs moving.
I'm also on two high blood press. meds . I've had one seizure, where I passed out for over an hour and pressure down to 40. icu for 4 days. I monitor my pressure every day. It generally stays ok, sometimes a little high and sometimes a little on low side, but nothing like the passing out, like I did one morning when I got up out of bed. I'm 60 years old.
I'm so sorry you have this, do you have skin problems? The meds have affected my short term memory and weight gain. I'm working hard on that, it's distressing as I was thin my whole like till I had surgery and next day had this, but didn't get diagnosed for years. Being positive is the only way to get thru this and a good support system-an experienced Dr is so important. I just found out last month, my Dr. is moving in 2 years. I'll get his help for a replacement. We have some good hospitals here in Phoenix, AZ Mayo Clinic and Barrows Neurological Institute.
Is there a RSD national organization there un UK? Hopefully the new Dr. will work out well for you. I'm grateful to have had my Dr. this past 4 years- I hate the meds, but the myclonic jerks were so violent, they would lift my head right off the pillow, and the electric jolts-scarry. Dr. said if I go off the lyrica, they'll come back. Take care and let us know how your appt. goes? Loretta Jewell