The Struggle for Sleep With AS

My AS has caused endless disruption to my sleep. At my worst, I couldn’t sleep for more than three hours at once. I’d wake up with so much pain and stiffness in my joints that I had to walk around the house for about half an hour until the intensity subsided before heading back to bed. The sleep disruption wore me down both physically and mentally. It was one of the main symptoms that pushed me to seek the medical help which eventually led to diagnosis.

One of the main factors supporting me with getting good sleep is that I'm now on biologics which are working. Throughout my sleep struggles I have found some other things which help me to sleep better and cope with disrupted sleep.

Making a comfortable sleeping space

I try to make my bed as comfortable as possible. I can’t control my pain levels, but I can control the space I’m in. I invested in some pillows which support my neck, and I got a specially shaped pillow which rests between my knees and reduces my back pain. I changed my mattress for a firmer one and added a mattress topper, so it still feels soft while giving good back support.

Sleeping space doesn’t just include the bed. I have a low, warm colored lamp on my bedside table. This can help in the night when I get up in pain but I’m trying not to wake up fully in case I can’t get back to sleep. I also find it useful to have anything I might need close to the bed, like painkillers, water, or muscle rub creams.

Heat

I’ve always found that heat reduces my AS joint pain. On my worst nights, I’ve even ended up having hot baths in the early hours of the morning. Hot water bottles and heated blankets really help too, though I’ve found it difficult in the summer trying to balance managing pain with not overheating.

Communication

Being awake at night in pain can be a lonely experience. When my nighttime waking was at its worst, I was living in a house share and everyone else would be sound asleep whilst I paced around the house. Communicating to the people around me about what I was experiencing helped me to feel understood.

It felt so repetitive to keep saying, night after night, that I’d been up several times and was exhausted. But it was comforting somehow to know that although no one witnessed my pain, they knew what was happening. My lack of sleep was impacting me mentally as well, and I think it helped the people around me to know that I was struggling.

Routine and relaxation

When I’m having difficulty sleeping I hate the feeling of dread I get in the evenings. The thought of another night of being unable to comfortably lie down, feeling desperate to sleep and worrying about waking up. I’ve found having a routine and reading before bed helps me to distract myself from that dread and stops me from catastrophizing about the night ahead. I also do things like having a bath or some light stretches to help my mind and body relax before sleep.

Has your AS impacted your sleep? Do you have any coping strategies to sleep well with AS?