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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Im 14 yrs old & was just diagnosed w/ RSD. They told me the best thing I could do was to exercise 5-6 hrs a day & to get in PT. What exactly am I in for? What type of exercises and things do you do when you have RSD? How long does it typically take to be cured?
[QUOTE=KatoK93;3430629]Im 14 yrs old & was just diagnosed w/ RSD. They told me the best thing I could do was to exercise 5-6 hrs a day & to get in PT. What exactly am I in for? What type of exercises and things do you do when you have RSD? How long does it typically take to be cured?[/QUOTE]

I think exercising that many hours a day is a bit excessive, especially when you have RSD. Overdoing it is a really bad thing. PT is always good, as long as it's gentle and doesn't have you overdoing it. Doing too much just makes you hurt worse. Keeping your body part with RSD moving, keeping range of motion and strength is the key.

Along with this getting a sympathetic block is also very important. The longer it goes on, the less chance you have for remission. Now comes the part I really don't like, but there is no cure. There is remission, which means having no pain or any other symptoms. As with cancer, if you are injured again there is a chance it will come back. Getting sympathetic blocks and following that with PT gives the sympathetic nervous system a chance to calm down and hopefully reset itself and get you into remission. I would talk to the doctor about getting these going as soon as possible.

Since you are so young I'm not sure if or what medications the docs would give you but it's essential really that you have some kind of pain control so you can get through PT and well, everyday life. A gentle massage of the limb with RSD helps to keep the blood flow going. RSD affects the blood flow to the limb which is why the color changes and the temp as well.

If the doc you see now doesn't know much about RSD then call Pain Management docs in your area to find one who does know what it is and how to treat it, or get your current doc to refer you to a pain management doc who knows RSD. Pain docs are often the ones who also do the blocks.

There is a small window of time in which there is the greatest chance of remission, between 3 and 6 months from the onset of symptoms. Most of the time it's difficult to get a diagnosis in the first place and then often there is a delay in getting proper treatment. That's a big reason you don't hear of many people who go into remission.

You're young and that's on your side. I really hope you can get the care you need quickly and I hope, doubly hope you're one of the success stories and get into remission. If you have any more questions feel free to ask and I'll do my best to answer. I've had RSD for 5 years and have it full body, in all 4 limbs. My youngest daughter will be 14 this month and it would kill me for her to have it. I believe in being very honest when it comes to dealing with the issues that RSD gives us. Knowing is better than not knowing and at least if you know the straight facts you can advocate better care for yourself.

Hugs,

Karen
[QUOTE=KatoK93;3430629]Im 14 yrs old & was just diagnosed w/ RSD. They told me the best thing I could do was to exercise 5-6 hrs a day & to get in PT. What exactly am I in for? What type of exercises and things do you do when you have RSD? How long does it typically take to be cured?[/QUOTE]

OMG I'm 14 but I have had RND since I was 8 but dianosed when I was 12. I went through the program and it is very hard. You do lots of excerise and desensitazation. I know you may want to quit the program but try to push through it. They try to make it fun with animal walks and pool time and other stuff like that but it still is hard. It didn't work for me. I'm going back to do the program again. This is my 4th "flare up" since I went there 2 years ago. But I have it all over my body and it was awhile before I was diagnosed so I hope things will be better for you. Please don't hesitate to post any questions you may have. i would be glad to anwer them. I know alot (too much actually. lol) on this subject. Also there is no cure....only a treatment. We won't get over this but with the right stuff, we can manage it. This past summer I did a triathalon!!!!!!!!!!!!!! I really did. It was hard but with all the therapy I do, I was in pretty good shape. Also ask about trying a TENS unit. It really helps me.





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