5 Ways Our AxSpA Community is Coping with Chronic Fatigue

We recently asked our email newsletter subscribers one question, and our community answered:

What kind of content are you most interested in on AxialSpondyloarthritis.net?

About 1 in 3 respondents told us they're interested in learning how to cope with chronic fatigue.

What is fatigue, and how is it related to AxSpA?

Fatigue is an extreme feeling of tiredness that does not go away no matter how much sleep you get, and AxSpA can cause fatigue in different ways. It may result from inflammation or stem from other health conditions that are common in people with AxSpA.¹

How does our community cope with chronic fatigue and AxSpA?

Coping with chronic fatigue and AxSpA is not a "one-size-fits-all" journey.

Below, several of our Community Health Leaders share how they are coping with chronic fatigue in different ways.

1. Sarah Lee: Reduced screen time

"On the worst days, sometimes all we can manage is laying in bed and watching Netflix. However, it’s in times like those where I find myself struggling to do even just that. I’ve learned that instead of watching a movie or TV show, I resort to listening to a podcast...so that I can keep my eyes closed but still have something to pass the time."

Read more on Sarah's perspective here: Combatting Chronic Fatigue: 3 Different Types of Rest and Combatting Chronic Fatigue: 4 Ways to Cope with Physical Symptoms

2. Steff Di Pardo: Mobility aids

"My walker is everything I need on my bad days. It helps me get in and out of bed and to the bathroom and back. As hard as it is needing a walker at such a young age, it’s provided me with a lot more mobility than I had before I got it."

Read more on Steff's perspective here: I Started Using a Walker for My Fatigue

3. Julie Vallortigara: Pacing myself

"Pacing basically gave me back control over my life, a way to plan and decide what I can do each day with confidence and with a feeling of accomplishment at the end of the day. It has made a huge difference for me to be able to do that. Slowly and steadily, I have been able to reach a good level of energy again so I could work, have hobbies, have a social life, and plan trips and holidays."

Read more on Julie's perspective here: Learning To Pace Myself Has Changed My Life and I Am Giving Acupuncture a Shot for My Chronic Pain and Fatigue

4. Jessica Gama: Biologics

"I’ve been taking my biologic injections every other week consistently for nearly 3 years now, and I can’t imagine going back to my days of draining, uncontrollable fatigue and joint pain."

Read more on Jessica's perspective here: My Decision to Stick With a Biologic, and How It’s Helped

5. Lisa Marie Basile: Creativity as self-care

"No amount of green juices or hot yoga classes are going to magically cure our disease, but sometimes a bit of distraction as you wait out its wrath can help. I like to paint. I'm bad at it (writing is my only skill!) but I pull out a canvas, my paints, and paint until I've calmed myself down. Instead of ruminating on the pain and feeling anxious about the disease, I try to let the colors work their magic."

Read more on Lisa's perspective here: Mind and Body: Flare-Up Coping Methods

Honest, open communication about fatigue with your doctor

While there are physical, mental, or emotional ways to cope with chronic fatigue, open communication with your doctor is essential.²

Dawn Gibson, one of our Community Health Leaders, shares:

"Be honest with your healthcare team about fatigue - tell them how often it happens and what makes it better or worse. Keep track of your activity levels. If anything you’re used to doing is harder or impossible, speak up. Keep up with screenings for common causes of fatigue like anemia, thyroid dysfunction, vitamin deficiencies, and allergies. Try to stay open to a new diagnosis. It’s normal to bristle at the idea that something else could be wrong, but ignoring it won’t help."

Read more on Dawn's perspective here: Fatigue, The Mother of All Calls From Inside The House

How do you cope with chronic fatigue?

Are there other ways you cope with chronic fatigue? No matter how big or small, your perspective might help another person living with AxSpA.