ankylosing spondylitis — Scope | Disability forum
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ankylosing spondylitis

deb74
deb74 Member Posts: 767 Pioneering
edited March 2018 in Coffee lounge
hi. does anyone have ankylosing spondylitis and how does it affect your everyday life? today i have had a particularly bad day struggling to get up and down the stairs. i managed to go for a walk this morning but i was in agony everytime i put one foot in front of the other. it doesn't matter if i sit down stand up or go for a walk when i feel like this nothing makes it better.  

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,799 Disability Gamechanger
    Hi @deb74, you may like to meet @Foxylady1961, @DIB19631 and @Deanarae who have all discussed ankylosing spondylitis on the community before!
  • deb74
    deb74 Member Posts: 767 Pioneering
    thanks. it would be good to talk to other people with the same condition as mine
  • Deanarae
    Deanarae Member Posts: 5 Listener
    hi, deb 74. I use to and still have problems with walking. I have walking problems and now in a wheelchair full time as the pain is too much. it does affect me every day but I battle on to keep the little bit of mobility I have left. I'm here anytime you want to have a chat. keep smiling 
  • deb74
    deb74 Member Posts: 767 Pioneering
    hi deanare. i don't feel too bad today. just had ti go into to town to the jobcentre. managed to walk there and back very slowly but i am now in a lot of pain. i have got an appointment with my dr next wednesday to discuss it. i am only 44 but feel about 94 sometimes. especially on tuesday when i could hardly put one foot in front of the other. i don't like to moan about it but sometimes you have to. thanks for getting in touch with me.
  • deb74
    deb74 Member Posts: 767 Pioneering
    hi Deanare. i was wondering if it only affected the lower half of your body. i am really having problems with my wrists and hands. i stuggle to hold a pen and i find it hard to wash up.
  • Deanarae
    Deanarae Member Posts: 5 Listener
    hi, Deb. it does affect my whole body. have you been tested for Raynaud's disease? I have that problem and was diagnosed with this and carpal tunnel.I know how you feel age wise. when I had an x-ray done on my back I was told I had the back of a 72year old and that was in 2010 so would hate to think what age it is now and I am 45 LOL.  
  • deb74
    deb74 Member Posts: 767 Pioneering
    hi. it is probably nothing to do with the spondylosis i have also got ME which causes all sorts of wierd things to happen to my body. sometimes my hands shake and i have got wrist straps with metal plates in that i wear when that happens. my dad has raynauds disease but it doesn't affect him apart from when his hands get cold and  then his fingers go white.
  • zoro
    zoro Member Posts: 66 Courageous
    You don't realise you have a spine till it gives you grief.
    I have a different spondy ...... recurring Spondylolisthesis.
    This is where one of the vertebrae moves out of place .... moves inward.
    Very very painful.
    Why my writing has gone bold I know not.
    Has the vertebrae dragged two discs with it or just one?
    Are they going to scrunch up as my body sets about dragging the stray bone back into place?
    How much stretching of the spinal cord is taking place?
    Not happened for a while so I must be due.
    When it happens I can barely shuffle half a foot next to the other so just stay in bed with very hot hot water bottles to try relieve the pain a little.
    My homemade music .....   thirty odd tunes ..... https://www.reverbnation.com/jackbackband
  • deb74
    deb74 Member Posts: 767 Pioneering
    hi zoro. i have not been too bad for a few days. i usually walk at least a mile a day with my dog which although it often hurts does help to keep me moving. just been out wity the dog and wished i hadn't my phone says it is -6 outside but it feels more like -15

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