CRPS anyone?

[woosey35]

My daughter is 8years old and has recently been diagnosed with CRPS and fixed dystonia. Has anyone got CRPS or can help on the subject? She has had symptoms that have come and gone (3 months on, 3 months off etc) for about 3 years now. She's always had it in her right leg but her left leg is now showing signs. She can be wheelchair bound although this recent episode has seen her refuse her chair..she simply drags her leg! Her leg goes purple and has gone really hairy. Poor girl is so young and copes with so much. Really proud of her strength. Just horrid for her. Has anyone got this?? I was told by her neurologist that it's incredibly rare in someone so young.

Hi There

My husband has had CRPS for the last three and a half years in his left arm/wrist. I won't lie, it's a terrible chronic illness for him. There is information online if you dig (including a forum called Burning Nights) and dig you must as it's rare and poorly understood. He takes medication daily and is under a pain management team. There is no cure at present however there can be periods of remission. I do know that the quicker the diagnosis is made and treatment given, then better the chances of improvement. Hope that helps and sorry I can't offer anything more positive.