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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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#1 | ||
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Hello,
My name is Mariah and I just turned 16. I’ve had RSD in my left Arm since April. We've tried just about every Treatement in the book, but with no change in the horrible pain. I was thinking... maybe if we got like a brace for the arm (elbow down) and I wore it on the arm it could help desensitize it, because as of right now it has had no movement since the injury. However, the arm can’t even be touched without sever pain so I would have to work my way towards this. Let me know what yall think!! ![]() |
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#2 | ||
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Welcome! I also have RSD from a elbow injury and went through at least 5 or 6 braces. If you have injury to your elbow or below you should consult with a orthopedic/hand surgeon before trying any braces or splint etc. Hand surgeons study from the elbow down and are the doctors that helped me. My problems was in my elbow and a very serious problem and a lot of pain so I can totally understand how you feel. When I got hurt I was told that I had some 1 in a million situation occur and there was only about 5 doctors in the country who could fix it correctly. Actually one was is in Texas. I had absolutly no range of motion in my arm, after much treatment I would say I have about 90% range of motion which has stayed for 4 years. I stuggle with endurance, meaning I can't push a vaccum for more than 5 minutes, or sweep more than 20 strokes. But at least I can move my arm instead of it being stiff, which was unbelievably uncomfortable. I I live on the east coast and my doctor is 2 hours away in NYC. But the doctor I mentioned above was in TX, I believe in San Antonio. If you are interested have your parents or guardian get on and I will be more than glad to give them the information. I hope this helps. And keep the faith. I can relate to a arm issue it's just terrible. Gabbycakes |
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#3 | ||
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Magnate
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I am not sure what type of brace you are talking about but with rsd I have always heard it should not be in a brace. Before my dx I was in an airboot for about 3 months and it made my condition worse cause I lost range of motion and it became so sensitive too. My rsd areas I don't let anyone touch even doctors. When I was at the pain program there were type of treatments to help desensitize slowly. Like taking different materials to the area. I did a fluidtherapy etc. Talk to your doc cause everyone is different in terms of treatments
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#5 | |||
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Magnate
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I agree with Gabby. See an Ortopedic Dr. and/or a hand surgeon.
I had ulner nerve surgery about 6 years ago and have had 2 rotator cuff surgeries, and triggerfinger surgery along with TOS surgery all on my right arm and hand. I first went through PT, and I had a brace for my elbow and I have braces for both right and left hand for CTS and RSD. They were special made for me. I still use my right hand brace every once in awhile due to I believe overuse of my right hand. It gets everything going but when I wear the brace, it seems it gives it time to settle down from over use. By seeing these speicalist you might find out you have other things going on in that arm besides just the RSD. I had blocks before my surgeries so it kept the RSD from getting worse or coming out in other areas. Glad you found the forum. You will learn a lot and get a lot of support here. Ada |
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"Thanks for this!" says: | gabbycakes (10-14-2010) |
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#6 | ||
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I can feel your pain. Radial Head Fracture,radial head replaced with titanium, ulnar nerve transposition, 2 contracture releases, 2 manipulation under anthesthia, and 1 collateral ligament repair. Oh and lets not forgert the many RSD procedures,PT for 10 months,torture, 14 stellate blocks, 3 - 5 day inpatient ketamine infusions w/boosters and one more surgery call a cryo.......,they try and freeze the nerves. But after all said and done I do not wear any braces and have about 90% of my motion and use the arm normally. Pain is my biggest issue which is almost constant but ofcourse better than when I got hurt and endurance is a big problem, I just can't seem to sweep,vaccum, garden etc. and if I do do it I have to work in 5 minute intervels. I mention the above because I was not with the proper doctors in beginning and I almost really had a disaster with my arm. What I did not realize is that once you start with surgeries like ulnar nerve surgery, implants, etc. you really need someone who only does that kind of work, which is very hard to find. I was told about 5 doctors in the whole United States could do work like this and do it right, NYC, Boston, Minnasota, Texas, and Maryland. I live 2 hours for NYC so I choose there. Good Luck Gabbycakes |
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#7 | ||
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Hi Mariah, I injured my left arm (distal radius fracture) over 8 years ago. I have been in a cast, custom brace or wrist cock-up brace ever since. If you are able to go without a brace, it would be much better for you. A brace leads to a reduction in the wrist movement and muscle atrophy. The brace does protect the skin but it also causes all kinds of skin irritations. You did not say what type of injury or treatments that you have had. If you want more info you can PM me cause I have been through it all. Of course I am left hand dominant too. Lisa
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