Hi Cheryl and Sharon
It's been a while since I last posted. New Dr for RSD has me busy with different meds. Finally got a handle on some of the symptoms. Dr Michael Weinberger in NYC is a PM doctor highly recommended by the Cornell Presbyterian University Hospital Neurology Head for the treatment of CRPS.
I've been seeing him once a month since November. He had me titrate my dosage of Neurontin up to 3600 mgs a day seeing that I had no adverse affects from it and told him the 1800 mgs I was on helped but seemed to be not enough. So up I went (over a three week period). The burning got under control. Put it this way its bearable most of the time.
He also had me start Trizanadine (Zanaflex) for the stiffness and it puts you to sleep within 1 hr. Then he had me begin taking Mexilentine (Mexitil) which is an anti-arrithmic now sometimes used for joint and muscle pain.
I am also continuing with Vicodine for general arm/hand, leg/feet, back and neck (2 surgeries: cervical and lumbar) and headache pain. I don't take as much vicodine as I did several months ago. I used to take 3 - 6 a day! Thank God I was able to wean off them slowly over a 2 month period by taking 4 one day then 2, then 3, then 2 for a while til I changed to 3, then 2, then 2 to 1 over the 3 months. Nowadays I take 1 a day, occasionally I'll need a second one. But some days I don't need any at all! Maybe every 3 days I can skip. This is good because I know I am less dependent on the Vicodine because the Neurontin being so high really helps me! And the other meds are helping too.
I asked Dr. Weinberger what I should do for the deep bone pain I get during the day sometimes. He told me to see how it goes with the newest med (Mexilentine) which he said should help me feel better (and it does??) and then when I see him this month he'll talk to me about the bone pain which feels like a car just rammed into your leg or arm and makes you yell and sometimes cry and I still get those times during the day when I feel like someone is ripping my fingers or toes out or a hot poker is going thru my hand or foot or leg but it doesn't last that long. If it does I take a warm bath, pop a vicodine and then if I still have it I take the trizanidine which knocks me out!
Sorry to be this long winded. Just figured it might help if other RSD sufferers know of the treatment plan my specialist is having me try. He did suggest the antidepression route but I don't want to do that. I've had my years of that a long time ago and coming off can be very depressive! Ha Ha
Well I began all this to tell you that prior to my RSD I was going thru menopause and had the hot flasshes to the point of soaking the floor with sweat. The Neurontin has gotton rid of the sweats. Yes, I still get the "hot then cold" feeling mostly as the day starts winding down but not as bad since I upd the Neurontin.
The only reason I am awake at this time is because I did not take my trizanidine last night which would have put me to sleep. In fact as many of you know, insomnia is one of the symptoms of this monster. My neurosugeon had given me Valium to help me rest, but Dr. Weinberger said it would be better to use the Trizanidine for the stiffness and it would help me rest as well. He has been such a God-sent doctor! I pray you all can find some relief. Again I hope my story helps someone.