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Or Axial Spondyloarthritis, as my rheumatologist told me they now prefer to call it.
I know there are a few AS sufferers here (and spouses of).
I seem to be relatively early into it - 18 months or so of symptoms, and it hasn't progressed too far. Which I'd like to keep to a minimum! Have you found dietary changes and stuff to be helpful? Supplements like Turmeric etc? What do you wish you had done earlier?
Unfortunately I've still got Long COVID so that (severely) limits the amount of exercise I can do. But I am doing as much as I can.
https://www.nhs.uk/conditions/ankylosing-spondylitis/
for anyone like me, that doesnt know what this is.
I used to get lots of pain in the back/hips, can remember having the kids (when very small) walking un my back in an effort to sort it out, osteos etc were a waste of time. I finally got on presccription anti-inflams (ketoprofen SR) which sorted me out, been on them for about 12 years, anual blood tests to ensure nothing is going pear-shaped. Luckily the symptoms seem to have burnt out in me and if I keep up the anti-inflams have no problems. Do lots of cycling (road and mtb) and despite breaking myself badly don't seem to have too many problems (although I have shrunk a little and have some verterbrae fusions). I know others have used disease modifying drugs, I've been lucky not to need them.
See now 'verterbrae fusions' sounds like a terrible thing to me. So they haven't affected you too badly? The Ketoprofen you mention - is that the one you take once a day? He said he'd get me on those for when I need them. They sound good - I would really, really like to be able to spend 8 hours lying down in bed without waking up in pain in the early hours!
Couldn't sleep though the night when it was bad (driving any distance also left me in pain).Probably got two fusions, dad had a few (he also had alk spond). Probably haven't been helped by seriously breaking myself on the mountain bike about 5 years ago (lesson head doesn't make a good brake), and tearing my rotator cuff this year, mtb again. I've hadno issues with the anti-inflams, been lucky. Saw a specialist rhuematolist who got me onto them, and had 5 year follow ups, he was happy with how things were going (about 7 years ago).
THe diagnosis isn't the endo of the world, I'm still very active and ride alot more than I used to. Gave up any type of running though and canoes/kayaks lost their entertainment value. Indoor climbing kept me flexible though
I'm in Humira (brand) injections every two weeks - that is what allowed me to get back to relative normality. At the onset I couldn't even shake hands with people due to the level of pain in hands. Hips were also bad. None of that now.
I'm also shrinking however!! Maybe 2cm in ten years.
I've also lost a few centimeters. Thing which I think really helped was moving from a lab research job into secondary teaching (which I generally really enjoy), never sitting down now but not heavy labouring.
I don't have this condition but I do have another Chronic illness. As a result of this I have looked at the impact of supplements generally so my response to this question
Have you found dietary changes and stuff to be helpful? Supplements like Turmeric etc? What do you wish you had done earlier?
would be that Turmeric is lovely in food but of no actual use in treating an actual medical condition.
But I am doing as much as I can.
This is probably the most important thing. Keep doing as much as you can no matter how little it is.