Hi, Charlie!!! You found a good site here. My name's Kath, am 45 and have been battling this horrible disease since 1989. I know and understand all you've been through and are feeling since reading your post, I felt I was reading about myself. It's a shame that we RSD patients have to educate the doctors. I started with RSD in just my arms and hands and since then it has spread to my whole body. I haven't been able to work since 1989 and every day, I struggle and battle the "work demon". My husband battles the battle every day now, too. Yeah, we do look normal and that really confuses people. They look at me and say, "Oh, you're not disabled...you're not in pain, etc" which really makes me mad. I was very lucky in '96 and '97 finding 2 people who saved my life...1 is my husband and the other I consider my sister and best friend. She's been battling this disease far longer than me. If it wasn't for them, I probably wouldn't be here today. I've had 4 nerve blocks in my neck which made matters worse, extensive surgery on both hands which did no good and only made them worse. As far as you having a sympathectomy, I would think twice about it as I know of many people and doctors who don't recommend it. One dr. wanted me to have it in my neck...luckily for me, my insurance co. decided at the time that I didn't need anymore treatment (work comp). From what I've been told by them, it can cripple a person much faster than RSD. Have you checked out
www.rsdrx.com ? This dr. is one of the best in the US and, in my opinion, the leading expert on our life. Another great site is
www.forgrace.org My mom sent me a newspaper article about it and RSD. What meds are you on? Have you tried the Lidoderm patches? I can't live without them. My husband is also disabled now and I know he has RSD (just from what him telling me how he feels) but so far, his drs won't make that diagnosis. Crappy, huh? Just know that you're not a burden to your family. A suggestion: Check out those 2 sites, especially
www.rsdrx.com and have your family take a good look at them. I know it has helped a lot of people who don't know too much about living with pain every minute. Any time you want to talk, just let me know. We all know and understand what this has done to our lives. We all need a good ear and shoulder, so don't hesitate. Even get the family involved...I did and it has been a blessing and HUGE help in my life. Hope this helps.