Does anyone else suffer with complex regional pain syndrome? — Scope | Disability forum
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Does anyone else suffer with complex regional pain syndrome?

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DeeOxnard
DeeOxnard Community member Posts: 20 Connected
edited November 2021 in Rare, invisible, and undiagnosed conditions
 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_Scope
    Tori_Scope Scope Posts: 12,492 Disability Gamechanger
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    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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  • DeeOxnard
    DeeOxnard Community member Posts: 20 Connected
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    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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  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    Hi @DeeOxnard :) 

    I just wanted to check in to see how you're getting on with things? I'm sorry that we couldn't find an answer with regards to your toilet needs and CRPS. Have things improved at all for you?

    I'm really sorry that you have to deal with a lot of pain with CRPS. I can imagine it can be frustrating and overwhelming on some days. It's great that you have a supportive pain management team, I'm sure that makes such a big difference to your care. 

    I know it's easy to feel guilty about relying on your partner a lot, but I'm sure he is happy to do those things for you and supports you, as he knows this is a challenging time for you too. In life, support is never going to be even between partners and other relationships and it's always about doing the best you can, with the resources that you have. Which I'm sure you are doing :)

    If you have any other questions or need further support, please just let us know. 
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  • dittydora
    dittydora Community member Posts: 13 Listener
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    Hi there i have crps on my right wrist and hand...i understand how you feel its true i feel stuck at home too. I feel older than my age 51 and use aids too one for bath and one for the loo my husband has to dye my hair unzip my coat.but i do set small goals daily if possible... today it
    will be how to open my bottle of rose... and tomorrow have to appeal a pip decission..
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  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
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    Hi @dittydora I glad you can share your experiences of CRPS with Dee. How are you feeling about appealing the PIP decision?

    Let us know if you need any help or support, and you can always visit the PIP category on the forum for advice :)
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  • Lottipops
    Lottipops Community member Posts: 1 Listener
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    Hiya @DeOxnard
    first post so I hope I'm doing this right.. Sorry to read you have CRPS I have lived with RSD, reflex sympathetic dystrophy which they now call CRPS for 17 years in my right ankle and part of my lower leg.. the constant scalding pains are horrendous and nothing I'm prescribed ever leaves me pain free. I have learnt to manage it and live with it now, but since my stroke my health has gone downhill but again I've learnt to adapt and do things my way.

    I'm currently fighting breast cancer which was diagnosed in December. Due to start my radiotherapy next week if we can convince my GP I need additional pain relief for my other conditions, so that I can get into the right position and hold it still whilst I'm given the radiotherapy.

    May I suggest for your toileting needs you speak with an occupational therapist, as they may be able to help you with a bio bidet, which is a portable bidet that sits on your loo and replaces your toilet seat. It has a handset which allows you to choose the setting that you need.

    In 2006 which was a year after my accident that disabled me and left me with RSD, I had a stroke which caused left sided weakness. I am left handed and it was near impossible for me to manage my toileting needs. Had to have help from my partner etc which wasn't ideal.. The bio bidet is perfect and may benefit you loads.
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  • Biblioklept
    Biblioklept Community member Posts: 4,682 Disability Gamechanger
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    Lottipops said:

    I'm currently fighting breast cancer which was diagnosed in December. Due to start my radiotherapy next week if we can convince my GP I need additional pain relief for my other conditions, so that I can get into the right position and hold it still whilst I'm given the radiotherapy.

    That was such a kind and helpful post @lottipops <3 I don't have anything to add to the discussion but I wanted to wish you so much love and all the best for your radiotherapy this week. I hope it goes as well as could be <3 
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