Hi, my name is Bluey32!

Bluey32
Bluey32 Community member Posts: 34 Connected
in Start here and say hello!
Hi all 

Comments

  • steve51
    steve51 Community member Posts: 7,122 Championing
    Hi @Bluey32

    Good Evening it’s great to meet you today.

    I am one of the Community Champion’s here at Scope.

    Please let me know if you require any further help????

    @steve51
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    Thank you steve51 I will keep you in mind ?
  • Ami2301
    Ami2301 Community member Posts: 7,879 Championing
    Hi @Bluey32 welcome to the community! Would you like to tell us a bit about yourself? :)
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    Hi ami2301 I don't know where 2 start lol
    I'm 51 female. I've must been diagnosed with abdonino phrenic dyssynergia I have had to stop work as it's too my h for me x
  • Ami2301
    Ami2301 Community member Posts: 7,879 Championing
    You're the first person I have come across that has abdonino phrenic dyssynergia! I've just read your other post where you explain a bit more about it, it sounds very painful! Are they able to help with the pain at all?
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    I take 8 50g tramadol a day &  8 30g codeine a day. 
    There is no cure as yet just pain relief. X
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    It is a rare condition &  I don't know if anybody in the UK has it apart from me x
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    I have put my profile pic up so u can see my big belly x
  • Ami2301
    Ami2301 Community member Posts: 7,879 Championing
    I've just had a look online, I've found the IBS Network which may be of use to you :)
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    It's nothing to do with ibs or bowel. It's my diaphram. Z
  • Ami2301
    Ami2301 Community member Posts: 7,879 Championing
    One of the points they make mentions Abdonino Phrenic Dyssynergia
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    Yes I've just read it. My specialist said I don't have ibs/crohns. There are only 2 specialist for my condition in the UK. London & newcastle upon Tyne. I just wish they Cud find a cure for me as I'm in a lot of pain most days x
  • Adrian_Scope
    Adrian_Scope Posts: 11,554 Online Community Programme Lead
    Welcome to the community @Bluey32!
    I've never come across Abdomino Phrenic Dyssnergia before. Have you spoken to anyone about better pain relief?
  • Bluey32
    Bluey32 Community member Posts: 34 Connected
    No my GPS are scratching there heads Cus they have never herd of my condition. I'm going 2 ask my specialist about better pain relief Cus when I'm really badly in pain I go 2 the gp & they send me 2 hospital & they give me morphine then discharge me after a couple of days x

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