What initial symptoms did you experience with AxSpA?

My earliest symptoms were having back pain and tightness which the doctor at the time told me was muscle related. It wasn't until I woke up one day completely unable to move and in agony that I had to be hospitalised where they first suspected I had AS.


Although looking back now I remember being told my a co-worker that I was walking funny. At the time I thought she was just mocking me but it was probably a sign too!

I had early symptoms explained away by a few different things. IBS since an infant (I was a difficult child) and TMJ (a complainer) as a teen. And, always tired and cranky. Then in my 20s my body just started 'crashing'. A disc in my neck burst, the full-body aches and pains came and never went away, exhaustion set in (mother of 2 why wouldn't I be tired ?) the back pain and ligament/tendon issues followed. It was progressive over decades. Rebecca (community advocate)

Hi Nicky
I had lots of symptoms for a good few years. Aching limbs, stiffness, always feeling tired. But I really started to notice it in my late 20s. At that time, I was working on building sites and so the work I did was very physical. But there's a tendency to blame early symptoms on other things as mentioned by in her post.
It was too easy to do so. I'd tell myself, of course your bones hurt, you're doing a physical job. And of course you feel exhausted all of the time, for the same reason.
I also had bouts of IBS which went unexplained for such a long time.
Go steady
Steve - Community Advocate

I chalked up my early symptoms to growing pains, period pain, my mental illnesses, or just tiredness.
I had pain in my lower back and buttocks. I thought maybe I needed to exercise more. Or that maybe it was from the minor car accident my family and I were in years ago. I also began feeling pain in my feet, especially my heels. I thought that maybe I was just wearing the wrong shoes or maybe spent too much time on my feet.
In hindsight, the biggest symptom I ignored was the eye issues I experienced. Ever since I was a kid, I always experienced light sensitivity and eye pain. I just thought it was normal until I realized other people don't experience this. Then I told myself that maybe this was because of my high astigmatism and tried not to think about it anymore.
After being diagnosed, I realized that the health issues that I had experienced until then were all connected. I had thought them to be isolated incidents and learning this helped me to recognize future symptoms and use that knowledge to minimize pain and reduce the frequency of flare-ups.