Dear GJmom -

I can't imagine how frightening this must have been, let alone that you've had the presence of mind to be on the computer. A number of threads have been put up over the last year on dystonia. Two of the better ones were posted by Sandra (Sandel) and open links to compilations of various drug therapies:

Dystonia medication facts.. resource guide @ http://neurotalk.psychcentral.com/sh...light=dystonia

and

NEW BREAKTHROUGH TREATMENT OPTIONS FOR PERSISTENT PAIN (dystonia etc) @ http://neurotalk.psychcentral.com/sh...light=dystonia

Of the drugs mentioned, I have never used any of the more interesting rheumatological agents. I have, however, used Baclofen with some success - although at the cost of short term memory. Klonopin is great for anxiety but did nothing for my spasms and while Flexeril was useless for me, I know others who swear by it. As with so many things, to each their own.

You should really be seen by a good neurologist. All the best.

Mike

ps Parafin wax is the old fashioned wax that my grandmother used to seal jelly. It's now used in a machine that heats it to variable tempratures in the 140 - 160 degree range. You quickly dip the affected limb in and out 5 times until a soft warming glove/boot/etc. forms, which you then keep on for a few minutes. Many people find it quite relaxing as did I, until one day I developed an incredible sensitivity to the heat, and that was the last of my parafin experience.

GJmom,
I was just thinking about your hand and what finally brought down the swelling on mine - prednisone. It took 3 rounds and the last round, high doses then tapered down, lasted 4 weeks. It brought the swelling down finally.
The parafin wax is what they use at nail salons. I bought mine at a department store. I have to go to a medical supply to get the wax but I think it originally came with some.

Linmarie

So SO sorry for your problem GJm. I don't actually HAVE that problem BUT once that DID happen to me.

I got a massage and the massuese Streched my hands sideways, both of them. I TOLD him that hurt but he said it was good to stretch all the tendons and ligaments in your hands so I allowed him to continue, STUPIDLY!! The next morning BOTH my hands were all swollen JUST like yours and I couldn't even move my fingers. it took a few days for the swelling to go down and I was totally useless in the meantime. I did soak them in cool water frequently because Obviously he did some minute damage in there and they HURT. SO if someone tells you HURTING you is good for you, tell them to STOP!!!! and get away from them. I should have sued him but he was a student and the massage was free and there was no lasting damage.

Hi

We treat my daughter's RSD in our home with a mild hyperbaric chamber. We have a wonderful neighbor who suffers from cervical dystonia, unable to straighten her head to a forward position. With the approval of her doctor, she tried our chamber with amazing results. Upon completing three treatments she was in tears when she came out and realized that she could straighten her head. She also suffered for 18 years with pain at the sight of her mastectomy. This pain also responded and was gone after the initial 3 treatments.

Her dystonia was not associated with RSD, but I wanted to share this for what it might be worth. If there is anyway that you could give hyperbarics a try, I would very much encourage you to do so.

Best wishes,

Jeanne

Yep, had the very same thing happen to my left hand about 11 months ago. I got to an occupational therapist right away and started soaking in Epsom Salts (103 - 105 degrees) four times a day for 15 minutes. Then in between the soaks, I kept my hand really warm by wrapping it in microwaved soft rice bean bags. The constant warmth, OT, and espom salts got my hand moving in about three days and it took another month of keeping it up to get about 70% movement back. Now, a year later I would say I have close to 90% back.

Good luck.

Geeze. What IS this?? I never heard of it and so many people have it??