What I Thought Was Old Age Was Axial Spondyloarthritis

About two years ago I started noticing something was off. My body wasn't recovering the way it used to. I was active. I felt healthy. And so my first explanation — the reasonable one — was age. Things slow down. Recovery takes longer. That's just how it goes.

I told myself that story for a while. Then something happened that made it impossible to keep telling.

Twenty minutes of beach volleyball.

I played a casual pickup round with some friends. Maybe twenty minutes of activity, nothing serious — I walked away feeling completely fine. No injuries. No pain at the time. The kind of light movement that shouldn't register at all.

The next day, muscle soreness. Normal enough. But it didn't stop there. What followed was a flare unlike anything I had experienced. I was bedridden for a week. I could not move. I could not get up to use the restroom. The pain was so severe that I genuinely thought I had slipped a disk — that somehow in the middle of a casual beach game I had done serious structural damage to my spine.

Twenty minutes of light activity. One week unable to move. That ratio was the first sign that something was fundamentally different about what was happening in my body.

That disproportionality — a completely normal amount of activity producing a catastrophic response — is something I now know is characteristic of axial spondyloarthritis. At the time, I had no framework for it. It was just frightening and confusing.

The part nobody tells you about inflammation.

Here is the thing about the word "inflammation" that I wish someone had explained to me early on: most people, myself included, hear it and think of a specific kind of sick person. Someone with a visible, diagnosable, serious disease. Not someone active and otherwise healthy. Not someone like me.

So when I was experiencing inflammation, I didn't register it as inflammation. It was just pain. Yes, there was swelling. Yes, my joints were affected in ways that didn't make sense for the activity level. But I had so thoroughly separated my identity — healthy, active — from the concept of inflammatory disease that I wasn't connecting what I was experiencing to what it actually was.

That was a giant miss. Not because I should have known better, but because the language we use around inflammation doesn't prepare people to recognize it in themselves. It sounds clinical. Abstract. Like something that happens to other people.

The diagnosis that wasn't definitive.

Getting to a diagnosis was its own challenge. My CRP — a common marker for inflammation — came back low. In many forms of axial spondyloarthritis, particularly non-radiographic axSpA (nr-axSpA), CRP is not reliably elevated. There's no visible joint damage on imaging because the radiographic changes that define classical ankylosing spondylitis haven't developed yet. That's the nature of nr-axSpA — the inflammation is real and the symptoms are real, but the standard markers that doctors look for often don't confirm it cleanly.

My doctor wasn't definitive. He couldn't be, not with the test results in front of him. But I had been reading — deeply, carefully — and the symptom picture was unmistakable to me. The morning stiffness. The inability to pick things up off the floor early in the day. The inflammatory pattern. And then there was the HLA-B27 gene, which came back positive. HLA-B27 is present in roughly 90% of people with ankylosing spondylitis and is strongly associated with the broader axSpA spectrum. It isn't a diagnosis on its own, but combined with everything else, the picture was clear enough.

I knew before it was confirmed. That's a strange place to be — more certain of your own diagnosis than your doctor is willing to be.

What this means for people still in the gap.

Axial spondyloarthritis — which includes ankylosing spondylitis (AS), non-radiographic axSpA (nr-axSpA), and related forms of spondyloarthritis — takes an average of seven to ten years to diagnose. Part of that delay is clinical: low CRP, absent radiographic findings, and symptom patterns that overlap with other conditions make it genuinely hard to confirm. But part of it is the gap between what people experience and what they think is worth reporting.

If you are reading this because something in your own experience resonates — the disproportionate flares, the morning stiffness, the inflammatory back pain that nobody has been able to explain — I'd encourage you to keep pressing. Track what's happening in your body carefully. Note the timing, the triggers, the recovery. That information matters, and it's often the clearest picture of what's actually going on.

That's part of why MyAxSpa exists. Not to replace the diagnostic process, but to help people build the kind of longitudinal record that makes that process possible — and to help those already diagnosed understand what their body is actually responding to.