RSD Helpline Support Group

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i had severe juvenile rheumatoid arthritis as a kid. Then on June 13 my left hand was crushed in a work place accident. I had to wait 18 months for surgery on my hand. By this time I had advanced to rsd without me knowing. I finally found a doctor who would finally listen to me after going through as many as 20 doctors. I knew I wasn't crazy from the burning pain my arm had. It felt like I was getting electricuted and my skin was wrapped in barb wire. If I did anything it felt like battry acid being ejected in to my skin. My pain doctor had me on 3600mg of gabapentin, 50 nortripltine, 50mg seroquel, 360mg morphine. Everything was going good until a 17 yearold ran a stop sign and hit me. This caused it to spread to my lower leg. I was rearended a year later by a 22 yearold girl. The RSD has spread to al 4 of my extremeties. I can barely do anything. Can anyone give me suggestions on what they are doing. My skin has gone shiney and yellowish, plus all my nail are deforming and the swelling doesnt go down. Thank you very much for your time.

Hi Steve, I'm sorry to hear about all that has happened to you. I'm 48, and have had RSD since 2002. Originally it started after my 2nd surgery for a torn bicep tendon. It started in my shoulder, then worked its way down the arm into my fingers. Then eventually it spread to all four limbs like yours. The best treatment that I've found for RSD is Electro Convulsive Therapy, ECT. The only place I now have problems with is in my legs, but its nothing compared to what it was. A lot of people disagree with this treatment. The doctor gives you an i.v. and puts two electrodes on your temples. It lasts 5-7 seconds. I've tried all kinds of things, but this one is the BEST. The pain releif you get is instant. I did treatments for about a year. I hope this has helped you. I understand your pain.

P.S. I have no swelling anymore either.

Too Bad young driver's don't have to wear a sign. I can only share what works for me. Now understanding that all I had to do to develope RSD is fall on my arse. Course I fell from the hood of a SUV. I'm not letting anyone give me shots. They give me other area's of concern with pain. I just take my Lyrica. I use a Ten's unit. Lidoderm patches and some Voltaren Gel. I do take codeine but not often. I to take some meds now for my bones. The main thing I can say is that you must lay down. I understand exactly about the electricity you speak of. I tell folks it's like slamming your funny bone 24/7. I also feel like I'm sitting in a Bee hive all day and night. No barbed wire here....lol. I make myself get up and do stuff. Don't really leave the house now. Aqua therapy is a charm. I need, we all need a pool at least 2 times a week. The lack of gravity in a pool is AWESOME! That is one thing I had for a year and now do not have. Just get in up to your neck. It's fantastic!. I would recommend it to anyone. And you gotta remember. "pain does not mean anything's broken or going to break". Famous RSD moto. Heard it on one of Dr. Swartzman's tapes. Gotta keep on keepin on. I'm working on building my pain sensitivity. If one can do mirror therapy I've heard it's good. I can't cause both of my legs look like crap...lol...Keep on smililng. xoxoxoxo to all. Diana

Fireball, you have a great attitude, and that surely helps. Just wanted to let you know that during the ECT you are asleep. I was about a month away from a wheelchair. I had full body RSD. You do have to keep active, that helps a lot. I have a stationary bike I ride. Even warm baths help the pain. I also use the Lidoderm patches. They work well. I also have a tens unit, and basically that's the same idea in using Electro Convulsive Therapy, but on a larger scale, helps rewires the nervous system.

Have a good day!

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