Undiagnosed and rare conditions
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Does anyone else suffer with complex regional pain syndrome?

DeeOxnardDeeOxnard Member Posts: 8 Listener
 Hi my name is Dee I have complex regional pain syndrome I’ve had this condition for nearly 2 years does anyone else suffer from this condition
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  • Tori_ScopeTori_Scope Posts: 4,959

    Scope community team

    Hi @DeeOxnard :) This isn't something I personally experience, but I believe we've had other members on the forum who've also been living with the condition. 

    From what I've read, it looks as though they don't know much about the condition at the moment. How have you found living with CRPS?
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  • DeeOxnardDeeOxnard Member Posts: 8 Listener
    I found living with CRPS a complete nightmare it started in my left hand & wrist but now I have it in my right hand and wrist but not as bad as the left.
    it just limits everything I do, I’ve gone from 3 jobs to being trapped in my house while my husband has to work to cover the lost of income, I feel guilty at times as he comes home from work to start again as I can’t cook I struggle with house work & washing, he says he don’t mind but I do.
    my hands are angry red swollen and lumps sticking out everywhere certain pressure points send me into burning pain, my nails just tear down the sides and bleed, it feels like my hands are going through an old fashioned mangle and having the life squeezed from them but I’m not actually doing anything for them to be experiencing this pain it comes from no where.
    I do have a good pain team but some days my medication takes longer too kick in, but my biggest problem it toileting I cannot grip or bend my wrists or hands so pulling underwear down is horrible at 58 I don’t want to become incontinent, so not going into too much detail I just don’t wear underwear which stops me venturing out.
    I just wondered if anyone had the same condition manage their toilet needs as I can’t stay indoors for the rest of my life.

    thank you for asking, technology is wonderful if they did not have the option off speaking your messages and wonderful people like you I think I would pretty much be on my own.
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