HNNP

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lee1971
lee1971 Online Community Member Posts: 6 Connected
edited October 2017 in Everyday life
I suffer with hnnp. Just recently had genetic test which was positive. Just wondering does it get worse as I get older?
Im in a lot of pain when u get an attack.

Comments

  • CaderMac
    CaderMac Online Community Member Posts: 103 Empowering
    Hello @lee1971! Welcome to the community. 

    I know there are some other people on the community with experience of HNPP who may be able to help you - @firegem71 and @amandawisehall are you able to offer Lee any words of advice or support? 
  • lee1971
    lee1971 Online Community Member Posts: 6 Connected
    Thankyou. Much appreciated
  • amandawisehall
    amandawisehall Online Community Member Posts: 2 Listener
    Hi Lee, can I ask how old you are? How long did your first episode last for?  Amanda
  • lee1971
    lee1971 Online Community Member Posts: 6 Connected
    Hi Amanda, im 46. My first episode lasted 3 weeks or so. At the moment im in no pain. Then it can come anytime with no warning. Lee
  • amandawisehall
    amandawisehall Online Community Member Posts: 2 Listener
    Hi Lee, thank you for replying...you will find that as you get older you will have more episodes, even if they only last a few moments.

    Did your doctor talk to you about sitting positions etc? I find gentle swimming helps relieve some muscle pain. 
  • steve51
    steve51 Online Community Member Posts: 7,121 Championing
    Hi @lee1971

    Welcome to our online community/website.

    I do hope that we can help & support you.

    I have found you some info on our site that might be ok for you ??????

    https://community.scope.org.uk/discussion/35857/new-to-this-forum-hnpp

    Please Please let me know if I can help you further ???