The Pain That Wasn’t AS

Last updated: June 2022

It had been a year without a flare, the first I could remember in more than a decade.

The years of fine tuning, taking care of my health, figuring out a customised lifestyle for myself finally seemed to be coming together.

The tragic and unexpected death of my brother came just as 2021 was drawing to a close. It was the first in a series of deeply upsetting events involving my family that continued into the start of the new year.

Suddenly, the pain was back. So often stress and grief have been my great undoing and it looked like this time would be no different.

I began going through the motions of adjusting to life with a flare. Back on the medication, avoiding walking up hills, fine-tuning my diet, checking my supplements, trying to meditate.

Six weeks later nothing had shifted

The pain stubbornly persisted. The carefully customized self-management plan I’d grown so confident in had stopped working. Had I just lucked out during the last year? What if everything within my body had begun to rapidly progress?

These thoughts signaled another level of stress, along with the realization I wasn’t as in control of my health as I’d thought.

I lost the motivation to exercise and eat well. The pain was gaining ground and I was running out of ideas. By the last week of March things reached crisis point and my normal life ground to a halt. Stuck in bed, I was no longer able to tolerate the pain of standing or sitting and could barely shuffle to and from the bathroom.

Stuck in that quiet room by myself, away from the busy-ness of the outside world I had lots of time to think. Resisting the urge to panic, I tried to analyze what was going on.

The more I thought about this flare, the more I realized there was something different about it

For starters, I was able to sleep, which was unusual. Pain would begin from the moment I stood up and got moving, but would subside soon after lying flat on my back. Not the usual presentation of AS at all.

I managed to get to my local doctor and in spite of what I had to say he felt strongly that I was in a flare. He ordered blood tests and referred me to my specialist for further advice.

It was when the blood tests returned no evidence of inflammatory markers that my rheumatologist ordered me to get an MRI. The results came back revealing no further disease progression, but a very obvious prolapsed disc. Getting told that it wasn't my AS was the best news I could have received.

A few months on I’m recovering well following a course of steroids, exercise and physical therapy. I’ve learned a lot about my body and why the injury occurred, much of it due to muscle weakness which I’m now keen to correct.

I’m back on track with the self-management plan of movement, nutrition, mindset and medical care that I now know actually does work for me.

I’ve also gained a new understanding of how important it is to trust my instincts and to listen carefully to the messages my body is sending me through my symptoms.

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