The Link Between Lupus and Insomnia

I'm not alone in struggling with lupus insomnia. Insomnia can majorly impact patients’ quality of life, especially since so many of us already live with chronic fatigue.

In the months leading up to the most severe flare I've ever had, I'd get ready for bed each night. I'd shower, put on my pajamas, and turn out the lights. Then I'd stare at the ceiling for hours, trying to coax my brain into letting me sleep.

I'd usually drift off around 3am, then sleep lightly until 7am. After 7am, I'd try to catch a few more Zzzs until 11am, at which point I'd pry myself from the mattress completely exhausted. Each day stretched before me like a marathon with no end in sight.

Lupus insomnia

Joint pain can interfere with the ability to fall asleep and stay asleep. Some of the medication we take to control our illness, particularly corticosteroids, can leave us feeling “wired” and alert rather than sleepy at the end of the day. Unfortunately though, insomnia in lupus patients has not been as extensively studied as more widespread symptoms, like joint pain or kidney disease.

My insomnia was a contributing factor in the severe brain flare I experienced in 2014. Fortunately, my doctor and I were able to get my insomnia under control with medication. A decade later, I still take medication to help me sleep.

Like lupus fatigue, lupus insomnia is a part of my disease that I need to manage on a daily (and nightly) basis.

Lifestyle adjustments for insomnia

While my medication has greatly improved my sleep quality, I have also adjusted my lifestyle to encourage my body to fall asleep faster and stay asleep. My activities during the day often determine whether or not I’ll sleep well at night. In order to combat insomnia, I do the following:

Fit light exercise into my daily routine

Cardio or intense exercise often leaves me exhausted for days. However, I’ve discovered that light weight-lifting or Pilates energizes me rather than drains my energy. I never exercise after 7pm because I want the boost of energy I feel to fade well before bedtime. A little careful exercise during the day helps me sleep well at night.

I use a blue light blocker on my phone

Staring at screens wakes me up, even if it’s late at night. I use a blue light filter called Twilight on my phone to help me sleep better.

I follow a strict bedtime routine

I plan to be in bed and take my nightly medication by 11:30pm and definitely no later than midnight. Around 10:30pm, I start winding down. I wash my dishes, let my dog out to use the bathroom, then take a shower. At 11:30pm, I’m in bed reading by soft lamplight while I wait for my sleeping pills to kick in. I used to rebel against the bedtime I set for myself. I often have more energy at night than during the day, and it used to feel like I was ending my day right when I finally felt well. Keeping a good book on my nightstand helps me stick to my bedtime routine. Because I love to read, going to bed has become something I look forward to.