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Awake in the Dark: Navigating Nighttime Pain With Axial Spondyloarthritis

Broken sleep and nighttime pain are challenging aspects of living with AS. Over time I’ve developed some strategies that help me manage when these symptoms crop up.

It’s usually the first sign my inflammation is spiking again when I get that tell-tale stirring around 3am. I toss and turn in my sleep and eventually wake fully from the pain in my lower back and legs.

Disturbed sleep used to upset me a lot

I’d feel panicked about how I would manage the following day after a bad night. There would be frustration and resentment, along with the fear I was entering another cycle of worsening pain.

I guess the upside of having the same thing happen repeatedly is you eventually learn some coping strategies. That’s certainly been the case for me with interrupted sleep. Its been happening for so many years now that I switch into auto-pilot and know what I need to do.

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Learning acceptance rather than worry

Probably the biggest difference these days is I no longer catastrophize.

Thoughts always feel heavier in the dark, and I would instantly go from zero to worst-case scenario.

Now I try to remind myself that I have AS, and this is just part of it. Yes, I’ll be grumpy and less capable the next day, but the world won’t end because I’m tired. (I wrote about how I manage on a tired day here).

Its easy to over-analyse your pain at night. Sometimes I can identify what’s caused my pain. Often I've lifted something heavy, or neglected my daily stretches. Inflammation spikes if I’m stressing over something or straying too far from the diet that works for me.

But sometimes the pain just comes back for no reason, and that’s part of AS too. I no longer lie in bed obsessing over what went wrong.

There are a number of other things I try when I wake with pain

The first is a mind-control exercise I would never have believed possible until I experienced it. I came across a pain-relief meditation a while back. It involved focussing on the location of your pain then consciously reassuring your body it was safe and could relax.

I was very cynical but gave it a go. After I practiced this several times I found it did actually help. Now I will often spend just a couple of minutes thinking these thoughts and my pain will dramatically reduce. I know this sounds far too simple to be true, but I’m constantly surprised by how effective it can be! I know my pain is real, but I also believe pain and fear are closely linked in our brain and we do have a level of control over what our body perceives.

If the pain persists, I’ll try some simple stretches while I’m lying in bed. Stretching my ultra-tight hamstrings will often release some tension and ease the pain in my legs, buttocks and lower back.

If I still can’t get to sleep after about 45 minutes I know it’s time to get up and move. I try to keep myself warm during this time, so I rug up and put slippers on before doing more stretches and walking some laps of the house.

While I’m up I might top up with some over the counter pain relief or rub magnesium cream into my lower back. I’ll apply a heat pack and drink a hot cup of tea. If all else fails I’ll try a hot shower.

I keep an eye on the clock and try to get back to bed before 90 minutes have passed since waking. This is the average sleep cycle most people operate under and gives me the best chance of getting a few more hours before morning.

Most of the time these strategies work. Sometimes they don’t, and unfortunately that’s life with AS.

What have you found helpful in navigating nighttime pain?

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