How I Beat Post-Exertional Fatigue

A month ago, I decided to change up my workout routine. Instead of my usual Pilates and light weight-lifting, I searched YouTube for workout videos and stumbled upon a beginner Barre routine. The pace of the workout was quick and I soon found my lungs burning slightly. Cardio wasn’t a type of exercise that I did frequently. After I finished the video, I felt a rush of endorphins and pride that I had made it through. I felt great for the rest of the day.

The next day fatigue hit me like a block of cement. The fatigue lingered for about 3 weeks until I finally went on steroids for a few days.

If you have lupus, you have likely experienced post-exertional malaise. The CDC described post-exertional malaise as "the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks."

Because I live with some level of fatigue every day, I have to pay close attention to my energy, sometimes every hour. If I don’t the fatigue might turn into post-exertional malaise, which could lead to a flare. Here are some methods I use to keep my fatigue in check:

Tracking my activity level

One of the first things I learned about lupus is that every activity comes with an energy price tag. Chasing my dog around the neighborhood when he escapes out the front door? A few hours of rest after. Cooking a dinner for friends and then cleaning up after? Resting for the remainder of the evening. Spending time with family members who stress me out? Days of stress-induced fatigue.

Other activities give me energy rather than take it away. Light exercise will leave me feeling energetic for the rest of the day. Eating healthy foods that are low in sugar gives me as much of a boost as caffeine. A good conversation with a friend I love can carry me through the rest of the day.

I keep track of which activity level number results in fatigue or pain the next day. I try to limit the activities that take energy and fill my life with activities that give me energy.

Activity and symptom journal

Everyone with lupus has different triggers for the post-exertional malaise. When I was first diagnosed, I had no clue which activities were causing my severe fatigue. The fatigue I was experiencing didn’t behave like normal tiredness. Sometimes the fatigue didn’t show up until a full day or two after I participated in the activity that caused it. By keeping a spreadsheet of activities as well as symptoms, I was able to decipher what food or activity was causing me to feel so terrible.

Knowing my boundaries with fatigue

During my first few years with lupus, I would push myself to study, practice viola, or stay out late because even though I had a chronic disease, I didn’t want to miss out on life. I’ve learned the hard way that by pushing myself when I really need to rest, I end up missing out on much more due to post-exertional malaise. Taking it easy when I’m tired leads to far more enjoyment than pushing through ever did.