How do you cope with fatigue?

Fatigue is tough. For me, coping with it is the most challenging symptom of axial spondyloarthritis. It can result from one symptom of the condition or be a combination of underlying events. Understanding how this disease affects me as an individual can be sufficient enough to thwart the lack of energy (and consequential low mood) and head me in a direction of feeling much better.

My go-to strategy when dealing with severely-low energy is by understanding what is happening and why I have the fatigue. I check in with myself, which is a key component in the severity and length of an episode I will have. Sitting on my yoga mat in a quiet room I meditate. I ask myself, “Have I been sleeping well enough the past week? Am I taking care of myself physically? or Did I overdo it yesterday raking the lawn?” Most of the time when checking in, I realize I need to slow down because maybe the kids and their activities are draining me more than I can handle or I do not have the “spoons” left to cook dinner tonight because I had too busy a day at work.

Learning to adapt my schedule and be flexible I allow myself to ease up on or cancel activities that are severely draining on a personal level. Priority is given to shifting my routine when symptoms of fatigue begin. Instead of going to the party with friends when I do not feel well, I choose to politely decline. Instead, opt to read a novel, watch a favorite movie, or head to my art room where my level of exertion is minimal. It keeps me engaged mentally, but I take the load off physically.

My fatigue begins to ease after a couple of days of taking it easy and having awareness. Being adaptive when fatigue hits, as it can be like running into a brick wall, breaks the debilitating cycle. This makes all the difference for me. It is manageable - stay strong!

asn’t formally diagnosed yet with AS, the doctors weren’t sure what was wrong with me, but they thought maybe there was some sort of systemic issue at play. I was young and had no other symptoms, so they really didn’t dig too deeply. I kept dealing with bouts of uveitis, all while going to graduate school and working full-time. I was utterly exhausted — way, way more than many of my peers, so I wrote the exhaustion off as “just life.” Deep down, though, I knew that my eyes were telling me something. There was something deeply wrong. “I shouldn’t be this tired,” I kept thinking. One of my PCPs even told me to eat and sleep better. Eventually, tired of getting sicker with uveitis and general exhaustion, I demanded to see a specialist. They finally started the discussion around HLA-B27 and looked into my family history (my father has AS) and made the connection. For a long time there was no radiographic evidence, but the assumption was that it was AxSpa. I got a formal diagnosis in 2017, with radiographic evidence. Before then, though, the AS started taking over. I was constantly exhausted — fatigue like molasses, like walking uphill, like sleeping and never being rested.

I discovered that a few holistic things were helpful. Primarily, movement and exercise helped. Daily workouts were by no means “easy” but any movement deposited energy into the energy reserve bank. Eating better helped, tremendously, too — especially plant-based foods. The cleaner, the better. Recently, I realized that alcohol was A CORE player in my fatigue. I cut back on 90% of my alcohol intake (going from drinking a few times per week to seldomly, at special occasions) and it gave me a new lease on life. Less flares, less exhaustion.

Sometimes, though, the best thing to do is to LET myself rest when I need it. Usually, if I spend a day in bed or resting (I am privileged to do so as I work from home), it helps me feel better for the next day.

This leads me to final point: I left my FT job 2 years ago (to now work full-time from home) because my fatigue was making it impossible for me to do my job. This was the number 1 thing that helped me get over the chronic, debilitating fatigue. But I know that very few people are able to actually leave their FT jobs.

is one of the most difficult symptoms that comes with AxSpA. It is very different from feeling “tired,” — fatigue feels like walking through thick mud and being pressed down by an invisible tidal wave, at any time of day, for no apparent reason. When my fatigue is bad, I have to lie down after a “simple” task like cooking or grocery shopping. To keep my fatigue at bay, I make healthy choices whenever possible, like eating foods that will energize me and exercising regularly. I also take supplements such as iron, B12, and magnesium, which I find help my fatigue. However, with AxSpA, healthy behaviors can only go so far — I still experience fatigue. I cope by resting when I need to and trying to let go of any guilt for not being “productive.” I also try to plan my days around periods of activity and rest, if possible. For example, if I know I will have a busy morning, I try to schedule an afternoon of downtime or low-energy tasks. It is important to learn which activities increase your fatigue so you can plan accordingly. This looks different for everyone — for example, exercising doesn’t lead to fatigue for me, but going shopping makes me feel like I’ve been run over by a train. Also, remember that resting may feel like a “waste” of time but it is so important; taking care of your body is the responsible thing to do.

I cope with fatigue by listening to my body and letting it get the rest that it needs. I suffer from severe fatigue flares and I’ve found the only thing I can truly do is rest. I’ve tried almost everything to help me but nothing does. I often find just listening to my body and letting the fatigue take over for a few days until it passes is the best thing I can do.