My Ankylosing Spondylitis

I was diagnosed at 14 when one evening I couldn’t move. Since my original diagnosis and hospital treatment, I had no obvious problems/flare-ups from AS at all until 2011, I once again could not move. An MRI scan showed that I had slipped two discs. In the past six years, the pain has become increasingly worse, until it became unbearable. I was seeing my GP over and over and was prescribed painkillers that unfortunately didn’t work. During these 6 years, I was told to rest and not to exercise, perhaps this being the best advice for slipped discs, but unknowingly the wrong advice for AS. Eventually I was referred to an Orthopaedist who, after looking at the X-rays, could see that the slipped discs were not the main cause of the pain and that AS fusion had started. This being the ultimate cause of the pain. Perhaps the slipped discs being diagnosed had masked an AS flare up and the fusion starting.

I saw a Rheumatologist, after having a new MRI scan. The MRI clearly showed that two lowest vertebrae had fused completely. With the next two starting to fuse, with these vertebrae having no disc left between them. I have pain in my hands, sometimes in my feet, both hips and ribs and sternum, shortness of breath and sometimes, blurred vision, extremely light sensitive eyes and chronic fatigue.

I have now been in contact with many other suffers of AS on forums, Facebook pages and have looked into this condition as much as I can. I have now found a specialist in AS in Austria. The next stage is to find a medication that will help slow the progress of the condition and ease the pain. As of yet, there is no known cure.

I am now 48, married with 3 children. In the past I have always stayed very active, running in half and full marathons, fell running, Sprint/Olympic/Ironman triathlons, mountain bike and x-country biathlon skiing, all in my pain-free days. Perhaps being so active had kept the AS at bay. I have now returned to working in art and design, after running guest houses for 15 years. After what can now be seen as a flare up and fusion, the guest house became too much for my body. So now I work from home and am a stay-at-home father for my son. I try to fight my AS through cycling, medication, diet, and determination. I hope that working on the ‘Riding With And For Ankylosing Spondylitis’ project will help to raise awareness for AS and encourage others affected by this condition.

Austria, Europe

One Response to “Rob”

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

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