How do you fight the fatigue of rheumatic diseases? You seemed to have so much energy at the ATRI conference.
I received this question from a person who I worked with at the Chicago Aquatic Therapy Conference last month. It’s a perfect thing to address for the month of May because it’s both Arthritis Awareness Month and Lupus Awareness Month. I live with both these autoimmune diseases as well as several others. I’m open with my diagnoses to help raise awareness about them, their impact on people’s lives, and how yoga has helped me. (I’m in no way suggesting yoga cures AI diseases and if you live with an AI disease and have been told you should try yoga I feel your pain and eye roll. I’ve gotten it too!!!! I’m not one of those, keep reading.)
How I manage my autoimmune fatigue
I exercise – not just yoga, not just yoga in the pool. As many ways as I can and as often as I’m up for. Even on a mediocre day, I can at least do something like a walk. That way, when things get really tough, it’s just a day off. I’m not losing strength or endurance because I have a strong baseline to start with. Plus for most people with AI disease, enough exercise, just not too much, reduces fatigue.
Research shows that exercise reduces fatigue for lupus patients, for example. “More time spent in moderate/vigorous physical activity was associated with less fatigue, less pain interference, and better physical function.” You can find the full open-access article HERE.
Research also shows Rheumatoid Arthritis patients with less disease activity, have less fatigue (1).
How do I keep my disease activity low?
I take my meds. I take both a DMARD (disease-modifying anti-rheumatological drug) and a biologic. I also take mountains of supplements and sometimes steroids. Talk to your health care provider about the right choices for you.
I watch what I eat. I avoid wheat and dairy as much as I can. They’re not my friends and we don’t play well together. Nutrition advice is outside my scope of practice but if you’d like resources on this, reach out to Autoimmune Wellness.
Therapy – seriously, the links between mental health and auto-immune disease don’t get enough attention. And I don’t just mean the depression or anxiety that might be a result of your disease, I mean the baggage you had before you got sick too. There are now lots of data on the links between childhood stress (Adverse Childhood Experiences) and AI diseases. Before COVID, I saw a therapist. Online didn’t work for me so I’ve produced mountains of journals over the last two years.
I have fun. I can work like a dog so I prioritize stepping away from the computer. Having fun with my husband and kids is higher than almost anything on the list. Laughter actually reduces your inflammatory markers (2).
And it’s important to say, I’m a high-energy type-A person to start with. I’ve been called the energizer bunny more than once, so imagine if I didn’t have all these diseases? We all are hard-wired in a certain way. Since my default is towards a higher energy place, I have more wiggle room when things get tough than someone who is naturally more sedate.
What can you do to manage your autoimmune fatigue?
By now you might be thinking, this is all great, Christa, but you haven’t been super specific and yoga’s only been sprinkled in. What this person was really asking for were ways she can have more energy too. I’ve saved my actual advice for last. Work on the things you can control – your own attitude and your self-efficacy skills.
Your attitude about autoimmune fatigue
We can’t control what life throws at us, like auto-immune diseases, but we can control how we react to it. This is where you get to apply yoga philosophy in real tangible ways in your life. Research tells us when you focus on your symptoms, your symptoms are worse. It’s called the nocebo effect. In yoga philosophy, you are always more than your disease.
It’s absolutely a challenge to manage your attitude when you’re tired of and from your chronic disease. I think of it as trying to balance the twin ideas of Dylan Thomas and grace. I rage against the dying of the light, but my anger isn’t out of control. I use it to get back up again.
For example, naps. Most people love naps. They spend afternoons daydreaming about drifting off. I actually hate naps. Naps to me represent high disease activity. They are those days when I have to go back to bed before 10AM because I feel terrible or I fall asleep on the couch at a social event because I literally can’t keep my eyes open. They are not moments of glorious self-care.
I use naps as a reminder of the importance of yoga philosophy in my daily life. Taking a nap is not a weakness. It does not mean I’ll lose hours of every day from here on out because I have a chronic disease. It’s a Santosha practice. It requires me to come to terms with the fact my body needs rest. I have to accept my disease and apply discipline (Tapas) to rest instead of pushing through. I’ve had to work on my attitude about rest as a weakness.
There is much more to me as a person than the fact that I sometimes take naps. It sounds obvious to say and not even that yogic. But it’s also easy to internalize rest as a weakness in our always on culture and see myself as less than for needing a break. Then I’m a person with so many crazy AI diseases I can’t even take care of myself or my family. I can focus on either idea. I choose to turn my attitude towards the yogic path of a person who is a great many things, not just one who is sick.
Your self-efficacy skills
Self-efficacy is your belief in your ability to get things done. Like your confidence in dealing with your daily life despite fatigue and pain. It’s basically how good are your coping skills. Not surprisingly, people who live with AI diseases, who score higher on measurements of self-efficacy, face less fatigue (3).
Very well and good but how do you improve your self-efficacy?
- Do things you enjoy and you’re good at. Try something new that’s fun. You can’t fail at having a good time.
- Set realistic goals. Pretty much no one decides to run the Boston Marathon tomorrow. They train and practice, often over years. Break big goals down into smaller goals that include sure-fire wins.
- Recruit help. A friend who cheers you on about your accomplishments will help you reach bigger and better goals next time.
Leave me a comment below. I’d love to hear your thoughts on how you manage your autoimmune fatigue.
Do you want to read more about yoga for arthritis?
I’ve written a lot about aqua yoga for arthritis that you can read:
- A yogi with arthritis and her journey with yoga
- Aqua Yoga for Arthritis Podcast
- Aqua Yoga for Arthritis Research
- Why an Aqua Yoga for Arthritis Course
Do you want to read more about yoga for lupus?
Since having lupus sucks, I’ve produced an aqua yoga for lupus class you can download for free HERE.
- Predictors of Fatigue in Rheumatoid Arthritis Patients in Remission or in a Low Disease Activity State. Olsen, et al. https://pubmed.ncbi.nlm.nih.gov/26555897/
- Laughter and Subjective Health Among Community-Dwelling Older People in Japan. Hayashi, et al. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4892770/
- Fatigue in rheumatoid arthritis: the role of self-efficacy and problematic social support. Riemsma, et al. https://pubmed.ncbi.nlm.nih.gov/9825741/