Face 1903

My story isn’t special or extraordinary, but I have taken so much strength and inspiration from the stories from so many other fellow suffers that I felt I should add mine in the hope that it might help encourage others.

I didn’t have many signs of AS growing up but as I got older, I was occasionally very stiff or achy but put that down to sitting in an office all day. For much of my life I was generally quite inactive, and a little overweight. But I discovered running in my 30s, inspired by the London 2012 Olympics, and found something I loved and happened to be good at. Then one run, I ended up having terrible hip pain and had to hobble home. It didn’t go away, and throughout the winter, I suffered hip and back pain. For a couple of months I slept on the floor in an attempt to stop the pain and took ibuprofen like sweets. I visited the doctor and suggested it might be Rheumatoid arthritis, which runs in the family, but the tests for that came back negative. The doctor did mentioned that I tested positive for something else, but dismissed it as very uncommon, and told me to come back if the pain didn’t go away. With rest (and as Spring came), my hip got better, I got back to running and forgot all about it. But on some days I would feel like the Tinman and have no energy, and started having occasional night sweats. When I looked up on wikipedia what the doctor had mentioned I tested positive for (HLA B27), I discovered AS, and the list of symptoms felt as if it could have been written about me. Another trip to the doctor, a swift referral to a Rheumatologist, and an MRI scan lead to a positive diagnosis, all within 6 months. I has early signs of sclerosis, but prompt diagnosis and swift Rheumatology referral by the NHS was invaluable. But while my pain, fatigue and exhaustion now had a named cause, the diagnosis felt like my life was over. The first AS leaflet I was given told me to prepare for a life in a wheelchair. I stopped exercising and started eating more and generally felt very sorry for myself.

Then I discovered the UK’s National Ankylosing Spondylitis Society (NASS), which has fantastic advice and guidance. Recent advances had made the outlook much more positive for suffers. This, combined with a prescription for anti-TNF from the rhumey (embrel) really helped and then I discovered some truly inspirational AS suffers. There is Isabel Lanssens who runs for a cure, Helgi Olafson who managed an ironman triathlon despite AS and Steve Jones, another AS triathlete and fundraiser. The chairman of NASS, Raj Mahapatra is also an AS sufferer as well as ultra-distance runner. They showed me what is still possible. I might be as fast as I once was, but I can still enjoy a sport I love, and being active helps AS, both physically, and coping mentally.

And I learned that we don’t have to suffer with this disease alone, Faces of AS, Facebook support groups and Spondyville exist to help us be part of something bigger, that helps us share the ups and downs and means we never have to suffer alone. I’m also grateful for a patient and understanding wife, who knew about my AS before we got married and did it, nonetheless.

A move from the UK to the Netherlands for work means I now have to get used to calling AS Bekhterev’s disease, but I have a rheumatologist here who has continued to prescribe my Embrel and I try and run as often as I can, for body and mind and am reading up on the role of gut and diet in AS.

I hope this inspires someone to get up and out, even for a walk, but to show AS doesn’t control you, it just makes it harder but not impossible to what you once took for granted.

Netherlands, United States of America

One Response to “Matt”

  1. Dear Matt,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

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