I am 39. I have been living with AS since my early 20s but wasn’t diagnosed until about a year ago. I always remember not walking correctly and feeling mechanical when playing football (soccer) as a kid. On many occasions I felt exhausted as a young man walking around town, but felt better the further I walked and the more I did. The biggest two injuries I had and which may have made things as bad as they are now were when I dived off a high board and folded my legs behind me and really hurt my back as I hit the water. Another time I tore the shoulder blade away at work and it took 3 years to heal. I took ibuprofen for the last 17 years and now I have ulcerative colitis and meds for this mean I can’t take NSAIDs anymore so the pain is quite severe. My wife and I suffered infertility combined with the health problems but we never gave up and following treatment we have little angel twin boys who are now 8 months old. Having the boys has made the pain more bearable and I feel like we are lucky despite health problems I have.
I was given a different diagnosis for some years and for about ten years believed I had scoliosis but this was a misdiagnosis. Maybe this is a normal path to diagnosis. Like MS we get a lot of don’t knows before get the definitive diagnosis.
I have had to leave my job as a desk based computer engineer due to the AS. I am not giving up and am now trying to start my own business buying and selling bric a brac. I have experienced such pain recently. Being fro the UK means NHS and free treatment without boundaries so I was given Enbrel a few months ago and after one day I had no pain and very little stiffness. I thought I was cured until 6 weeks later I suffered a week of trigeminal neuralgia, forcing me off the Enbrel. Three weeks on and the AS is back with vengeance. Those with As know that this means a flare up – one of many. I have 2 baby boys and the 6 weeks free of pain showed me how different I am with them and how much I can help my wife when well. I am never going to give up, but some days I wish people would be understanding of my condition. That makes me feel down. I am considering trying Humira and have been offered this but am not sure and am worried about side effects.
This is a nice forum, giving the chance to tell others with AS that we are not alone in this and we will work together to make sense of it and to do what we can to get better together.
England, United Kingdom