Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

 
 
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Old 11-06-2009, 11:04 AM #5
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ali12 ali12 is offline
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Join Date: Jul 2007
Location: Yorkshire, UK
Posts: 2,463
15 yr Member
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I'm SO sorry to hear that your daughter suffers from RSD and really hope that you can find something to help her real soon! You are both in my thoughts!

I developed RSD when I was 12 years old after an ankle sprain (am now 14) and that was hard enough but I can't imagine having it at just 10 years old ... I really feel for your daughter! The RSD started in my left leg and has since spread to include both arms unfortunately after further injuries. I spent13 months in a wheelchair after a nerve block caused me to lose my coordination and had to undergo an Intense PT Program to learn how to walk again. I can walk short distances now, however I still have to use my wheelchair long distances.

Have you thought about trying to Intense PT Courses to see if they'd help your daughter? I've spoke to quite a few kids before who have said that they have really helped them. I've been on 2 before and they hurt a LOT but they did work, though I am a far way off being 'cured'!!

If you and your daughter have concerns that it isn't RSD, I'd go and get a second opinion and have further tests run. I had a second opinion but my RSD was confirmed by about 6 different doctors as I had all of the symptoms unfortunately.

As the others said, try and not lose hope. I know it's really hard but your daughter is fairly new into the diagnosis (RSD is best caught within 3 months) so there is a real chance of finding something to help her.

For me, no medications really helped. I have tried everything nearly. The only thing that helps is Ketamine however I only take that when I am in a really bad pain flare as my Dr was concerned it could cause more problems than enough. I am currently undergoing PT and considering seeking further options as a last resort to try and help with the Dystonia (movement disorder) I also have. I've tried mirror therapy to try and learn how to get my RSD limbs moving correctly but it didn't help me. Everyone with RSD is different unfortunately and that makes it hard to determine what will work and what wont.

If you or your daughter ever want to talk, please know that I am here for you as I know first hand what you are going through!!!

Take care and keep us posted,
Alison
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