ankylosing spondylitis — Scope | Disability forum
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ankylosing spondylitis

J3nny
J3nny Member Posts: 1 Listener
edited March 2019 in Cerebral palsy
Hi there I've recently been diagnosed with ankylosing spondylitis and scholorosis of the spine . I'm only 27 and havr been on a infusion called infliximab but unfortunately my body rejected the drug and gave me a bad allergic reaction with tightening of the chest and problems breathing. I've now been offered a new drug called golimumab which is a self inject. Is anyone else on here have the same disedis as me and how have you managed to control your pain to get on with daily activities. I've had to stop horse riding cut my hours down at a farm where I work and having to claim benefits. My partner left me as I wasn't giving him sex any lomger due to the pain. 

Comments

  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @J3nny welcome to the community! I am terribly sorry for what you have been through! @AnkyieSpon may be able to share some tips and advice :)
    Disability Gamechanger - 2019
  • St3ve
    St3ve Member Posts: 9 Listener

    Hi @J3nny. Sorry to hear of your condition and how it has affected you.  Re the last point you made - people can be so selfish.  I hope you are managing to keep your spirits up none the less.


  • happy91
    happy91 Member Posts: 101 Pioneering
    Hi @J3nny best of luck with your claims and work. Sounds like good riddance to me if all your partner cared about was getting sex from you. Welcome to the community and hope you find a positive way to move forward.
  • CockneyRebel
    CockneyRebel Member Posts: 5,212 Disability Gamechanger
    A partner that leaves due to selfish reasons has probably done you a favour. Worse still would be a partner that stayed out of pity, who could end up bitter and resentful. You are young enough to find a new partner that is more understanding, if that is what you want
    Be all you can be, make  every day count. Namaste
  • Adam_Alumni
    Adam_Alumni Scope alumni Posts: 164 Pioneering
    I am sorry to hear that you are in such pain and what has happened to you. 

    You may find our Chronic pain discussion of interest. Our members may be able to provide useful tips for you 
  • mouse70
    mouse70 Member Posts: 4 Listener
    Hi I'm new today I also have ankylosing spondylitis I've fIled my first biological and I'm going back to hospital next week fingers crossed they can help me.
  • mike62
    mike62 Member Posts: 34 Courageous
    Hi @j3nny
    My back started aching when I was about 38 and I'm 62 now. I woke up aching, tired and got home aching/tired. Dr said it was spondylitis with no real cure. Keep body moving basically. I tried all the normal stuff that folk with this pain.

    Over the years i'm on the floor in pain taking time off work about once every two years then over the last recent years it happens more. My mild cp gave me shorter left leg bout 12mm and drop foot with bit of a curve on my spine. 

    I was ready to pay up to 10 grand for back op but surgen said might make it worse and refused to do it (at least he was honest and  didnt rip me off and do it). So the nhs are going to inject me with nerve numbing pain relief early November. If it works it may last a few months at which point I could go private and ask for a Rhizolysis injection that basically kills those nerves.
    Hence I won't feel the pain. Thats the theory anyway. 
    I have also been to a private limb/shoe clinic to get proper insoles and shoe raise because my walking gaite is not good.

    I'm not sure if any of this helps you but thought I'd tell you anyway. Hope you get answers and maybe they will discover better pain reliefs as time goes on.
  • WhileIBreathIHope
    WhileIBreathIHope Posts: 216 Connected
    J3nny said:
    Hi there I've recently been diagnosed with ankylosing spondylitis and scholorosis of the spine . I'm only 27 and havr been on a infusion called infliximab but unfortunately my body rejected the drug and gave me a bad allergic reaction with tightening of the chest and problems breathing. I've now been offered a new drug called golimumab which is a self inject. Is anyone else on here have the same disedis as me and how have you managed to control your pain to get on with daily activities. I've had to stop horse riding cut my hours down at a farm where I work and having to claim benefits. My partner left me as I wasn't giving him sex any lomger due to the pain. 
    I feel sad for you that your partner treated sex as a requirement, being Male and happily together with two children- my partner didn’t demand sex or feel bad that I couldn’t manage it at the time I ended up housebound and flat on my back.

    We held each other and hoped for better times, I’m male if it helps and don’t expect a sex rota from my partner or to be pencilled in for a time and date- should be spontaneous.
    Sounds like your better off without them.
    ?

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