A woman with axial spondyloarthritis peering up through a crack in the surface of hardened quicksand.

Caught In The Undertow: Fatigue Caused By AxSpA

It’s late afternoon. My day has been great so far — my pain is low and the sun is shining into my kitchen, tinting everything gold. I start to gather my ingredients to make dinner. I plan to cook, clean, and get some work done before hanging out with a friend.

Fatigue takes hold

Then, my evening plans are suddenly put on hold — a heavy feeling starts to unravel in my body, starting from the center and making its way to the tips of my fingers. I start to feel weak, like I might faint. Thoughts in my head become slow and disconnected. All I can do is go to my bed, lie down, and allow the wave of fatigue to engulf me. I want so badly to get up and continue my day, but I’m caught in the undertow and my limbs aren’t strong enough to fight it. My ingredients for dinner sit on the counter, untouched.

Fatigue is one of the most common symptoms of AxSpA. As I described, it affects me physically and mentally. It feels like moving through thick mud or quicksand while wearing ankle weights, while also fighting the flu. It coats my brain in a fog that leaves me exhausted and scattered. It forces me to rest when that’s the last thing I want to do. And this isn’t a fun, relaxing, Netflix-watching rest — it’s physically uncomfortable, so I can rarely do anything else while waiting for the fatigue to pass.

I can't fix it

Fatigue is particularly frustrating because there is nothing I can do about it. It’s not the same as being “tired,” so no amount of sleep, coffee, or willpower can eliminate it. The usual “fixes” that help tiredness are powerless against the fatigue caused by an autoimmune disease. And although I try to prevent fatigue by exercising, eating healthy, and managing my disease with medication, it will always be something I deal with.

How do you cope with fatigue?
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It's unpredictable

Just like the joint pain of AxSpA, fatigue is unpredictable. For me, it is sometimes caused by a painful activity, like being on my feet for several hours. Other times, fatigue hits me hard after a day of doing absolutely nothing. Sometimes, I go for weeks without experiencing it and sometimes, I get “fatigue flare-ups” that knock me out for a few days. I never know when it’s coming; I can only accept when it does and wait for it to end. I am learning not to feel guilty when I am ambushed by fatigue; instead, I must take care of my body and remind myself that my to-do list can wait.

I still get frustrated, especially when fatigue disrupts my plans and productivity. It makes me feel defeated. But having a chronic illness means listening to your body, even when you’d rather not, so I have learned to settle in on the ocean floor while fatigue drags me down. Eventually, I'll make it back to the shore.

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