Rsd/crps?

[Desnik]

My DD(13) has finally gotten diagnosed after 2 years of pain from an injury to her ankle/foot. She has been diagnosed with RSD and I was wondering if anyone here has it and can offer any advice, info, or books or websites with good info? I know it isn't life threatening but I am still very sad for her. I wish she didn't have to go through this but am happy to finally have a diagnosis.

 

[kim929]

I was diagnosed with crps after a fall. I have been told there is no cure they are trying to keep it under control with meds. I have to keep moving my leg/ankle to try and get my nerves to stop misfiring. Some days are worse then others. Every morning I wake up with my foot burning and we go from there. I really feel bad for your daughter.. hope she doesn't have severe symptoms. Sorry I'm not much help, but I am just learning to deal with it myself....

 

[WDWBarb]

After an extremely severe break in my wrist (I actually shattered it), and a surgery to attach an X-fix device for proper healing, I was diagnosed with RSD. My hand turned black, the hair on it turned black and it shrank in size a great deal. My doctor diagnosed me with RSD at that point.

I'm not sure what changed or why, but after that diagnosis, I got better. He explained to me that my injury was so severe that my mind basically "cut off" my hand and wrist, thinking that the injury was too severe for recovery.

But just when I thought it got as bad as it could (I couldn't let anyone even see my hand), it just started getting better. Today, besides some scarring, my hand is pretty much normal. I lost range-of-motion from the injury, but suffer NO symptoms of RSD (this is almost 10 years later).

Does your DD simply suffer from pain, or does she have physical changes in the area of the injury?

 

[Desnik]

DD has the pain, weakness, numbness, burning etc but the area also has discoloration. When it swells up it will turn blue/grey. The area is sensitive to touch and she can't even put all her weight on it. She basically can't stand on that one foot. She feels like it is asleep with pins and needles and the pain is constant. Sometimes it isn't as bad as other times but the pain is always there. She has seen a bunch of specialist, had every test, physical therapy and now they want to put her on a very low dose of Cymbalta. Then follow that up with exercises to strengthen her foot.

 

[cab0899]

We treat alot of CRPS in our therapy dept. Every case is different but options included physiotherapy, sympathetic nerve blocks, graded motor imagery.

 

[Witch Mountain]

I have it in my leg, and was allergic to the most common medication to treat it (gabapentin/neurontin). Lyrica also minimizes symptoms for some.

There's a website, butyoudon'tlooksick, which has message boards. A lot of people on there have RSD/CRPS. They're also on Facebook.

 

[Desnik]

Thanks for the info. I am so sorry for those of you who have this.