A man with axial spondyloarthritis hunched in the fetal position in a dark room.

How My AxSpA Symptoms Suddenly Deteriorated

I consider myself relatively lucky. My diagnosis did not take decades, compared to the averages and anecdotes I’ve come across, I’m one of few who got the fast nr-AxSpA diagnosis.

That doesn’t mean I’ve found it easy.

Within months of my diagnosis, my body regressed. Medications that had previously worked were not and everything I did caused debilitating pain.

At my worst, I was nearly useless. I couldn’t think straight, I could barely get off the couch, and the simplest tasks like doing dishes or making dinner would take everything I had within me to complete.

My normal exercise became difficult

Small changes in my body made me seek a diagnosis. After exercise, I felt muscle fatigue far longer than normal, and I noticed increased difficulty in doing activities I had done for years. The most obvious changes were that I could no longer bear the weight of a barbell on my shoulders for squats, I could not run on pavement and my muscles would seize up so badly after exercising walking was difficult.

I could not do even the most basic of exercises, despite having drastically improved my physical fitness over the past few years. I had been regularly doing hour-long yoga sessions, but suddenly I couldn’t get through 15 minutes without searing pain. Never mind high-intensity activities.

If I did the dishes, I would finish barely able to stand upright and drenched in sweat.

I also had serious foginess

Cognitively, it was equally hard. I could barely form sentences in conversation. I could be in the middle of a task, like preparing a meal, and completely forget why I was there and what I was doing.

I was resigned to doing things in 20-minute spurts. Any longer and my body would force me to stop. My abilities went from high-intensity exercise to only being able to walk up the block and back.

My routines compeltely changed

My daily routine was diminished to almost nothing. I began baking sourdough, like so many people during pandemic shutdowns. It provided a structure to my day. I did the dishes and made dinner.

Most importantly, I went for my walks. Every day, to the stop sign and back. On a good day it takes about 15 minutes, but for so many days it would take up to half an hour. Regardless, I did it every day because it kept me moving.

In total, my task list would probably take an hour or two to complete. It would take me the entire day.

The mental anguish was just as tough as the physical struggles. I’m used to being busy, it’s how I thrive. To be reduced to simple tasks really took me to a dark place mentally.

There were days that getting out of bed became a struggle. My body ached and I had nothing to get up for, leaving me feeling utterly useless and feeding symptoms of depression.

Things are slowly getting better

Today, I can feel my medications gradually helping, and I continue to push my boundaries. My days are not back to being full, but they feel productive again and mentally that has been a huge relief.

As I write this, I have exercised for four days in a row. Hour-long activities, not as high intensity as I’d like, but a far cry from the walks to the stop sign. On day five, my body is finally saying to take a break. I’m not back at full force yet, but I can see the light at the end of the tunnel.

Twenty minutes is no longer my limit, and I can hardly wait until I can go full throttle again.

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