spikes coming out of a bed

Tips for Painsomnia

Painsomnia has been an issue for me since the onset of AS in 2001. Painsomnia can manifest at any stage of the sleep cycle, but finding a comfortable position is usually the biggest struggle. Pain in my neck, mid spine, and SI joints mean struggling to settle down and to fall asleep. Severe breakthrough hip pain can wake me up. My painsomnia symptoms tend to wax and wane just like all the other symptoms of AS.

Stress makes it worse

Painsomnia is worse with high stress and periods of increased disease activity. The worst painsomnia of my life happened while acting as my uncle's live-in dementia caregiver. It was a period of maximum energy output, stress, and uncertainty for our household. This type of caregiving requires a near constant state of vigilance about where the patient is, what they're doing, and their mood. Our family is small, leaving us with a small support system struggling to learn everything we needed to know in real time.

It hurts everywhere

By definition, painsomnia hurts. It hurts patients body, mind, and spirit. A night with painsomnia is spent in an aching body and worried mind, with the full knowledge that tomorrow's responsibilities won't evaporate just because refreshing sleep didn't come. I know that I'll wake up feeling like I’ve been run over by a train, this might improve as the day goes on, but it's equally likely that it won't. My brain might be foggy and my pain levels higher than usual.

It took years to break with the temptation to just push through my life, no matter that was happening. High levels of disease activity made it feel like sleep wasn’t important since I’d never feel well again, no matter how much rest I got.

Rethinking rest

Founding Spoonie Chat and working in social media health advocacy caused me to reconsider my relationship with rest, as modeling constructive health habits a matter of personal integrity. How could I tweet @ others about getting a decent night's sleep if I didn't bother to try it myself?

I made several important lifestyle changes to improve the quality of my sleep. The two main goals were to work with my the natural tendency to get sleepier with nightfall, and to implement constructive responses when painsomnia strikes.

Trying to prevent it

To work with the sleep cycle I do my best to avoid stimulating my body and mind in the evening. This means cutting off any stimulants used to fight my fatigue between 4-6PM. This includes coffee, caffeinated drinks or medications, and sports drinks. Consuming upsetting media or arguing on the internet before bed are also out. I've cut out most arguing on the internet because it's poor use of my time and very bad for me.

When painsomnia strikes

What helps me when painsomnia strikes:

  1. I check over my bedding and pajamas to see if everything's going as planned, and make any necessary adjustments.
  2. Get up to stretch, walk around a little, and see if I feel better.
  3. Apply heat or other topical remedies according to package instructions or in the manner my doctor and I have agreed to.
  4. Use healthy distractions like music, soothing sounds, looking at my picture books, or reading.
  5. Give myself a break. Painsomnia is not my fault or a failure.

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