Originally Posted by Imahotep

I got it in mid-'98 but at first it was nothing of note. I was strong as a bull and as active as a small herd and RSD was just an annoying pain in my hand. But it kept getting just a little worse and started causing fits for my digestion since this pain was so stressfull for me. After a time I started realizing the pain was associated with usage. If I took it easy with the hand then the pain was better and digestion OK. It was all downhill from there.
Over time everything started falling apart and my life just started imploding as I had to give up one thing after another. I still worked for a long time but used one hand almost exclusively. Eventually the symptoms and pain expanded and got worse and working became most problematic. I wasn't diagnosed until mid-'03 however. The doctor told me that the prognosis wasn't as bad as I might think and that most patients eventually get on the right combination of drugs that they can function.

My symptoms have been far too numerous to even attempt to list and there are some new ones that are in themselves disabling but I'm still active for up to a few hours per day. I still have some strenght on my right side and can be very productive when I work. I have nearly as many bad days as good ones and I'm finally learning what will set me off so don't get the most severe symptoms and pain as often as I used to. Memory was a problem early on but was probably caused by medication. It seems to be returning a little but might not be caused by the RSD or the meds this time.

I try to go out every morning but only make it four or five days a week. On good days I'll swim and try to maintain a schedule with this as much as possible.

I do a lot of reading and surfing now and find the pyramids extremely fascinating. This interest is expanding a little to include more early history and late prehistory. I take care of my mom's house and all my own chores. There's not much social life left but there's still family.

The biggest problem recently tends to be stress and, in a way, it long has been. Depakote keeps me on an even keel and helps with the pain a little. Neurontin helps with the pain a lot. Tizanidine allows me to sleep because without it fine muscle spasms keep me awake. Seroquel helps me to sleep. Norvasc keeps the blood pressure down even when pain levels are high. Keeping the blood pressure down prevents headaches and other problems. I have a few meds I take in the event of emergency. Some of my specific symptoms are overwhelming. I also sometimes need additional help getting to sleep and get side effects from too much seroquel.

Pain killers never really worked for me. Methadone helped me not care about the pain but it didn't really ease it. Even a large quantity of morphine just got me to quit screaming though the pain was little different. I got this when I wakened from an unrelated operation. My hand hurt so badly that I woke up to my own groans and it got worse from there.

The worst thing about this is the feeling of powerlessness and the lack of control over anything. I was once almost fearless and micromanaged my world and now I'm afraid of the dark and can hardly manage what little is left of it. I suppose the best thing is that it has slowed me down so I can appreciate parts that were invisible to me in the past. My greatest hope is that someday I can get off the neurontin since it affects my mind quite a bit.