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Acceptance of Life Changing with Ankylosing Spondylitis

From a young age, I knew I would at some point have problems with my back as scoliosis is quite dominant in my family.

However, I didn’t quite expect to have the problems I landed with!

I’ll keep it short and sweet.

The beginning of my AS diagnosis

Basically it started with mild scoliosis in my early teens, followed by an operation to insert two 9inch rods which now hold my head onto my body.

These were needed because part of my spine/odontoid peg was removed due to it being lodged in my brain stem. Yes, very dangerous!

But I’d managed to get to 30 without paralyzing myself.

Then the back, hip, bum and neck pain began.

It took a long time to receive a diagnosis

It took me 5/6 years to eventually get a diagnosis of AS along with scoliosis at the top and bottom, bone degeneration, fusing of the spine and a few other bits!

I’m still fighting to live a normal life as a SEN teacher with two grown-up children, but I’m slowly becoming aware I just can’t do it anymore.

I’m reducing my hours at work regularly and home life is leaving me miserable as I know I’m not me anymore.

What next?

I’m exhausted and grumpy all the time and always in pain. The anti-TNF meds, which I pinned all my hopes on and convinced myself were working, I’ve realized don’t do anything.

What’s the alternative after this?

I’m left feeling scared, hopefully, you can give me some hope.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AnkylosingSpondylitis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Auldyn Matthews-McGee moderator
    3 weeks ago

    Thank you so much for writing and sharing your story @claire. I know my husband accepting that he may never have a normal early adulthood was scary. He also had many years of misdiagnoses and told to just go to the chiropractor. That caused him years of pain that could have been relieved earlier. And possibly some of his bone growth stopped.

    Do you happen to have a pain management specialist? That helped my husband immensely. They gave him some non-opioid medication in combination with physical therapy and that seems to do more for him than just pain meds.

    All my best,

    Auldyn

  • Lawrence "Rick" Phillips moderator
    1 month ago

    Claire:

    I do not know about help, but I do know you have selected a wonderful caring place to share your pain, frustrations and cheer. We in this community understand. I hope that helps and for the days it doesn’t, we get that as well. Welcome to our community.

    rick – moderator.

  • Claire author
    1 month ago

    Thank you Rick, even just getting it all out seemed to help a little. I’m normally such a positive person and I know there’s 1000’s upon 1000’s worse off than me just feeling a bit sorry for myself I guess!

  • Lawrence "Rick" Phillips moderator
    4 weeks ago

    Claire, it is great to let it out. Be sure and share away.

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