NeuroTalk Support Groups

Hi! My name is Michele and I am a 36 year old single mother of three children. I have recently been searching for a site where I can maybe get some feedback on my recent diagnosis of RSD as this is all new to me. I sustained what I thought was a minor injury (broken finger) at work last year in Sept. which quickly progressed into RSD in my left hand and arm. I have gone through extensive trials of several different pain management remedies: narcotics, nerve blocks, I-flow catheters and all were temporary relief until I had a trial of the spinal stimulator for one week. That was the most effective and really seemed to help me to some extent so my doctors elected to have the stimulator permanently implanted in my hip in which it tunnels through my spine and electrical leads into my neck to stimulate my sympathetic nervous system which is out of whack. This in turn sends a vibration in my left arm to help with the agonizing muscle spasms & muscle tension that I endure on a daily basis.
I had the surgery in Feb. 2008 and it was a very evasive surgery. I was laid up for almost twelve weeks and it was very hard on my body. After that time, I did get at least 50% relief in my arm as it is NOT a cure unfortunately. That to me was so worth the surgery!! However, I experienced really bad headaches daily and had difficulty charging the device in my hip so just recently in August my neuro-surgeon...which by the way is the absolute BEST...elected to move it to try and alleviate the new pain I was suffering, he moved the device from my hip to my right side of my belly and the leads in my neck to my right shoulder blade...to date I still have headaches as I am still recovering from the surgery.... but I am able to charge myself better. This still amazes me, I go from completely healthy to all of this and all triggered by a broken finger...how does that happen? I am post surgery about 6 weeks now and feeling ok, this is just a very depressing and life altering change for me. I sleep terrible, I am lucky if I get 4-5 hours of sleep at night, I awake easily with spasms and don't have any clue what triggers them???I have been off work for over a year now and not sure as of yet when I will be returning. Most recently I have been experiencing some pain in my left thigh, almost similar to what goes on in my left arm...can this actually travel there, does anyone know? I know RSD can travel but I thought maybe from arm to arm or leg to leg...not arm to leg?? This is all so new to me and I have tried to do my homework on it but it's hard to get all the answers as this is a hard disease to diagnose. I am very nervous to return to work and not sure at this point if I can do it. When I have spasms which I still have at least 4-5 times a day it's very debilitating, they usually last anywhere from 10-15 minutes and my initial reaction is to cry so in the comfort of my own home, I can deal with it as painful as it is however, when I am in public it's new for me, I wear a wrist brace that goes up to my elbow and when I start to claw (have a muscle spasm) the brace restricts me from doing it, but I still have them and I carry a mechanism that allows me to put up to the device in my stomach and crank up the frequency in which stimulates my arm....but nevertheless it's very embarrassing for me and people don't understand!! I am trying so hard to stay positive but I am so scared that this is traveling or something weird is going on....I almost just want to stay at home all the time so I don't have to deal with this in public. Those who have it can relate but those who don't it's hard to understand. It took my whole family time to see how it has affected my life. Thank god for my very supportive family, friends and most importantly my children and my boyfriend who have stuck by my side, helping me and caring for me at times during all of this. I consider myself a very strong person as I have hurdled many obstacles in my life but I do know without all of them, I don't know how I would of made it through this far! Anyways, I would love to know if anyone knows more about RSD and how quickly it can spread...that is my main concern right now!! I look forward to getting to know you all!!:)