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Hi I am 28 years old. I was diagnose with ankolosing spondylitis when I was 20. I take humira but still suffer with neck greatly sometimes it a struggle to swallow. I also had both hips replaced totally in the last three yeArs. I was just woundering does anyone else feel isolated and can t do the normal things like play football with friends or go and have a drink cuz it make you ill. Just woundering if people feel as isolated as me?

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8 Replies

  • Posted

    Sure Darren you are not alone on that one....I was a busy nurse until a few years I just sit at home alone with my pain. I find it difficult to even get into the car and can't get around unless someone offers to wheel me in my wheelchair. My daughter has to cut up my food often when my fingers are swollen and wont bend. Like back to babyhood..!! This disease is sooo isolating and that is the hardest part. Hugs to you.

    • Posted

      Sorry to hear you feel as isolated to as me to go from being a busy nurse being isolated must be hard. I find myself feeling guilty as I get so fed with this horrible disease but there is so many people suffering with such worse thing. How long have you been suffering for. Do you know any good forum to talk to people struggling or is this the only site?
    • Posted

      Dont be too hard on yourself Darren...we all understand and empathize with you. It gets us all down from time to time. But then we bounce back on good days. Look for the good days....can you read books or can you take up a gentle hobby just to pass the time away. I do crosswords if my fingers will work...and read all the crime stories I can find. and I cook a bit...only can stand up for ten minutes at a time...but sit down when the pain starts to get to me. Do you have pain meds ?  Can you challenge your friends to a chess match or cards ?  How about writing a book to help others who have AS....We need to chat to others on a regular basis...can you start a blog somewhere ? Let me know your thoughts on all this....catch you soon....G
  • Posted

    So sorry to read your message, l was diagnosed about the same age as you but that was 50 years ago, l was 40 when had both hips replaced but now booked for revision. I do understand your feelings of isolation but as an only child of an only child and childless guess been easier to cope.Have always felt different thoughout my life and of course look different. Have tried to be very focused and stocic, but very difficult at times particularly when faced with many more health problems than A.S. have total fusion including neck ribs pelvis but don't take any drugs. I wish you all the best and hope you have lots of friends and family to support you, Tony

  • Posted

    Im 28 too and i know exactly what you mean all i do is stay in bed at home or at hospital and i have uveitis and vitalago from the as so i cant stand light and i live right next to the beach.

    I was the most social person ever and i trained everyday and was a dancer.. now im sitting at home on a long weeknd while my bf and everyone i know is out camping and partying becasue im so hypersensitive i cant stand to go in a car.

    It takes 30 tablets a day to get me to the bathroom with a walker.

    I have been doing those adult colouring in books when my hands arent swollen and i can see i guess making something pretty in a sh*tty situation is a posotive.

    I hope you manage to get out soon

  • Posted

    Hi Darren, I feel that I am isolated a lot. I can't do my normal everyday things without stopping & starting. I am on Simzia ANTI-TNF for my AS, & now they tell me my Achilles may be over stretched and need an ultra sound. I have had this since I was 25yrs old I am now 48yrs old and have other illness along with this. Hope you feel better soon, stay strong.

    • Posted

      Yea it a daily struggle. I am on humira and methotrexate. But still take a lot of codein. Had both my hips replace at 25. I just find hard to socialise as I can't drink or do sports any more as the pain to much. How do you keep busy?

    • Posted

      I just start my day mainly woken by stiffness and pain, but try and get myself motivated which seems to take for ever. Then I just go about go into town have nosey around, out & about with my mum, then about 1pm & 2pm I am exhausted so I have a test. Lost a lot of my confidence but trying to get myself out & about with friends, sometimes it's easier said than done.

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