Hi MsL,
I'm so sorry you are in this intense pain. I have had the stabbing intense pain, electrical jolts and jerks thru my body & brain. The only thing that completely took them away was high dose of neurotin and then later changed to lyrica. 3200 mg. a day of neurotin and 400 mg. of lyrica-not both at same time. the lyrica seems to help more with the pain. I was also on two anti-depressants for depression and nerve pain. I was on the high dose of neurotin for 4 years. Just a few months ago, I went slowly off the meds and just one 120mg. of cymbalta now. What has really lowered my pain level is sleeping a restorative 10 hrs. a night-300mg seroquel. When I started sleeping 10 hours every night, I was able to cut my lorazapam-anti-anxiety med from 2mg 3 times a day to 1 mg 3 times a day. An anti-anxiety med calms the sympathetic nervous system , thus lowers pain level. I also went from 6 5/500 mg vicodin to 3 5/500 a day. I'm also on two blood pressure meds. Because of the sleep, my pain level is drastically dropped. When I got the flu last month, I did have a bad flare and went back up on meds, but now am back down. I feel like I'm getting my life back, but still need to be on half amount of drugs. My Dr. just completed a 200 person trial on seroquel and the results were a high percentage of help on fibromyalgia and sleep. When it is published, I'll post it on the board. I've had RSD 14 years, now full body and internal. This has been a gift. I've been seeing this Dr. 5 years and feel I'm in a better place than I was a year ago. I follow a healthy high anti-oxidant diet. I am 61 now, mobile with exception of one hand partially paralyzed-wasn't diagnosed for 4 years and delay of treatment.
I did not have a recurrence of stabing pain when I went off the meds. I'm grateful of the progress. I have a very low immune system. The internal RSD is tough to deal with. For me, the bad part of being on high neurotin was the weight gain, which is now slowly coming off. The sleep -fibromyalgia med causes weight gain also.
My RSD quickly followed breast surgery and underarm benign tumor. Swelling and frozen shoulder.
I hope some of this is helpful. I've been thru different treatments. One that was really helpful was desensitization by my hand Dr. Also, even though I wasn't diagnosed with rsd, I immediately had physical therapy and massage therapy on my shoulder, then remission, then more therapy on other shoulder that became frozen. For me the above drugs and methods helped. I know we are all different, I have both hot and cold rsd. My Dr. of the last 5 years, is a neurologist, psychiatrist, and pharmacologist. He is envolved in trial studies-just built two clinics that have hbot in each of them. That is my next treatment. Take care,loretta soft hugs
p.s. I realize all meds have negative reactions, so a knowledgable Dr. is important and weigh the pros and cons. I was awake all night, not getting to sleep till 5-6 am, so the pain was unbelievable and quality of life was poor, not leaving the house for weeks and weeks. I'm grateful for the change.