Sue (USA)

I had carpal tunnel in my right wrist due to over use at work (over 8 hours on the computer).

After two years of trying to work it through without surgery I finally gave in and went for the carpal tunnel release (I had numbness and my thenar muscle which is located in the meaty part of your thumb was totally deteriorated to the point where I could not open jars).

After the carpal tunnel release the surgeon wrapped my arm in 3" thick wrapping (no way to control the swelling). She put me on Darvocets for pain which I took religiously. In one week I started getting really strange feelings in the hand; like really hot or really cold, like nothing I had ever felt before in my life. I mentioned it to the doc and she said something about "sympathetic". I had no idea what she meant by this. Two weeks later I could no longer stomach the Darvocets and told her I was in really bad pain and could not sleep at night. She wrote out a prescription for Elavil (I know now what this was for! She never mentioned RSD to me). I took it for a few days and had migraines so bad I had to stop taking it. By the time I went back to her several weeks later it was too late.

I had pain in my forearm that was so bad that I had no "on a scale of 1 to 10 how bad is it?" barometer. I had to develop a new barometer because despite being a college level athlete I had NEVER experiences anything like this!

So, I was diagnosed with RSD; had sweaty palms, blue fingers, shooting stabbing pain (not hot) up my forearm that felt like someone was jabbing a sharp knife full force directly up my forearm. Several time I almost blacked out; hyperventilating with tears streaming out of the corners of my eyes but I was not crying.... very strange. I would spring WIDE AWAKE in the middle of the night and could not get back to sleep. I felt so bad when the pain was at it's worst that I thought maybe I felt hopeless.... but then I realized that in order to feel hopeless one needed to be able to define hope and I could no longer do that.

This was in 7/2002. I was one of the lucky ones; stellate ganglion blocks worked and the cocktail mix of nortryptiline, Vioxx, Celexa, TENS unit, biofeedback (I HIGHLY RECOMMEND THIS!), mega B12, lecithin, REALLY good diet, excellent vitamin mineral supplement, and lots of support I am almost in remission.

My insights and learning for anyone that has the RSD experience:

1) Do ANYTHING AND EVERYTHING to learn as much about this disorder as possible.

2) Get angry, get mad, do everything you need to do to feel sorry for yourself and blame everyone in your path. Do this and do it quickly and thoroughly and MOVE ON. It will not be a part of your Chapter 2 which does not include the past; only YOUR FUTURE!

3) Do not expect family, friends, relatives, co-workers and anyone else to have a clue about what you are going through. Unless they have experienced a pain disorder they will have no emotional memory to draw from. This is actually a good thing, would you wish this on anyone? Just give them a break when they make stupid comments like "how is your phantom pain"? Or "It's all in your mind". Or "you need to just move on (actually there is some good truth in this one).

4) Forget about how you lived your life in the past. Your priorities will no longer be where you are going for vacation, what you are having for dinner, or what sport your kid will play in school. Your priority MUST be regaining your health.

5) DON'T try to BEAT your pain...you will not win this game (I chuckle as I type this). This is rather spiritual but you may figure out what I mean by this someday. The angrier you get at the pain the more cortisol your body releases (this is the thing that gets your RSD really roaring!) and the more the pain. When you figure out that you must trick your pain and your sympathetic system you will win! It's a great thing that the Cortex of the brain is still in ULTIMATE control.