Ankylosing spondylitis / axial spondyloarthritis

[Poopgal]

Uffff where to start. Basically it is looking like I might have AS or some sort of axial spondyloarthritis and I have sent myself into a spiral of despair and terror reading reddit and other forums.

I am 40 and an avid exerciser. For the past 12 months I have had a weird lower back pain. Nothing awful but always there - a discomfort and irritation around my left SI joint. My bloods are all fine - inflammatory markers normal and all rheumatological markers negative. HLAB27 negative.

MRI shows mild bilateral sacroiliitis, more pronounced on the left. I have the odd ache and pain in other places but very mild, sporadic, and short lasting. Have health anxiety so half the time wonder how much it is in my head. Have only had a real need for pain relief (ibuprofen stick on patch) once before an international flight. It was amazing though, all discomfort was just obliterated.

Fast forward to now and have had a consult with a rheum who thinks I probably have some sort of axial spondyloarthritis. He thinks it’s atypical as I don’t really have stiffness or night and morning pain - my pain gets more pronounced throughout the course of the day. I have full range of motion and am hyper mobile in some joints.

Dr has asked for an xray to see if I have any damage and has put me on Celebrex in the meantime.

I am terrified. My own future I can handle but the thought of my two young boys getting this from me sends me into a spiral where I just want the ground to swallow me up. I have never felt an existential dread like this before. The thought of my boys spending their lives in pain makes me want to die.

Does anyone have any coping tips?

Sorry you are feeling so worried. The NASS charity will be able to advise and support you. https://nass.co.uk

Hi. I know this is 4 months late but I’m actually weirdly going through the same thing. I first had similar symptoms at 32 - 6 months after my first child and was told I have axial spondyloarthritis by one rheumatologist then was told by another that it was due to hypermobility and pregnancy but 1 year later and symptoms worsening to waking me up at night now, they are going back to atypical axial spondyloarthritis ( am also hlab27 neg and all bloods clear) and considering putting me on biologics. I also have health anxiety and am terrified of my daughter going through this and am scared to try for another baby in case I flare and then pass this on to another child. How are things with you now? Any progression to your symptoms or diagnosis? Have been trying to improve my diet and am seeing a physio for now but am booked to have a steroid injection in sij and will see if symptoms improve with this.

Your pains sound similar to mine. Always there low-level, move around, something always hurts. It started with my back as well.
I've recently been diagnosed with psoriatic arthritis