Hi Jay, this is a concern that I share, and although I obviously don't know your history, my guess from the little bit that you've written is that any PT diagnosing you with a 'lumbar sprain' that was 'out of alignment', clearly must have had it wrong, it seems to me. The problem wasn't that your SI joints were 'out of alignment' and no amount of realigning was likely ever going to help the situation, not when all along the problem you were suffering was AS attacking your SIJ! I am sorry for your added hospital nightmare. That sounds like a horrible time you went through.
Like others here, I am grateful for the help I've received from physiotherapists too but recognise that mine is there to help to improve my range of motion and mobility, not to diagnose but to assess my limitations and offer ways to help me.
It would certainly be awfully confusing if a PT was saying something contrary to what a rheumatologist was saying, and especially if trying to provide useful guidance in absence of a diagnosis... I think the point however, is that their level of training doesn't approach what a rheumatologist specializing in AS has behind them and perhaps should be taken with a grain of salt?
Sue, I think being lost without a diagnosis would be incredibly difficult to deal with in so many ways. I only spent 2 & 1/2 yrs before a dx and I remember that feeling of not knowing too well. It was not fun. If I'd never been diagnosed and was still suffering as I was back then, I can guarantee you I'd still be looking..!
And Karen, yes, KickAS does exist to provide info and support for folks whether they are diagnosed or not - absolutely!! There is a wealth of info here.
Like Michelle said, instability of the SIs is not one of the symptoms of AS and could be an important clue. In fact, I remember that last discussion mentioned and asked this very question of my rheumatologist and two physiotherapists (who work alongside her in an AS clinic) just days afterwards as I just happened to have an appointment. All three confirmed that the SIs get stiff due to inflammation that surrounds and tries to protect a joint under attack and range of motion becomes more limited. That's one purpose of inflammation as an immune response - limiting movement to prevent further injury. In the process of erosion, as joint space widening occurs and bone remodelling begins, the sensation and experience is primarily one of stiffness and pain. That's my experience anyway and I believe it is a fairly universal one with AS. The SIJs appear blurred on xray. So, my thought process would be that either a PT has incorrectly 'labelled' it as instability when that isn't what is actually happening underneath, OR, it isn't AS at the root. From my view, it's doubtful that it's both AS and instability as these two don't jive... (with my usual disclaimer of, I am just a patient though, so another grain of salt.
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Because KA does have a bunch of folks, both with a dx and without, the beauty of gaining multiple viewpoints may also make it more difficult to sort through, as symptoms may seem even more wildly varied than they are and thus more complex to sort through, I fear.
Anyway, I hope this is helpful somehow!
mig
