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I have lived with rheumatoid arthritis (RA) for over five decades and for me, one of the most debilitating symptoms is the fatigue. I’m not alone in dealing with this symptom. In fact, according to the Talk Over RA website, 79% of people who live with RA also have fatigue. RA fatigue is very much like what people experience when they have the flu — exhaustion that doesn’t improve with sleep, brain fog, memory issues, and more. In fact, one study showed that people with RA experience more severe physical fatigue than people who have cancer. (1) As you can imagine, this has a tremendous impact on your health and quality of life. In this post, I’ll discuss RA fatigue, tell you about a valuable tool to discuss fatigue with your doctor, and share Pro Tips for how you can reduce your fatigue and get back to your life.

Why RA Makes You Tired

The cause of RA fatigue is not clear, but it seems that several factors are involved. The first is RA inflammation, which is systemic and affects your whole body. Tumour necrosis factor (TNF) is one type of pro-inflammatory cytokines (small proteins that trigger inflammation) and it is believed they are part of the cause of RA fatigue. This theory has been supported in studies blocking TNF which resulted in an improvement in fatigue. (2). When you take a treatment that brings you into remission or low disease activity, you may find that your fatigue improves. This was my experience and I still fondly remember that feeling of gradually waking up again.

But RA is complicated. Even when in remission, it’s common to still experience fatigue. Some studies indicate that this may be related to biological factors. For instance, there is some interesting research that indicates inflammation may pass through the blood brain barrier (3). This has the potential to complicate treatment, as Biologics, some of the more effective RA medicines, cannot pass through that barrier. As well,other research discusses the pervasive fatigue is a sort of evolutionary response to being sick where Mother Nature wants you to sit still until you heal (hard to do with a chronic illness). (4, 5)

But many sources also consider pervasive fatigue as being connected to other factors in your life, including comorbidities, such as sleep apnea, obesity, chronic pain, depression, and more. I know my own fatigue is complicated by the fact that I also have fibromyalgia. This condition has many overlapping symptoms with RA, including brain fog, chronic pain, and deep exhaustion. (6)

Personally, I also believe that modern life plays a role in creating fatigue. When I look at my healthy peers, I see exhausted people. The pace of life is so hectic with work, family responsibilities, caregiving duties, and chores that many people are burning their candle from both ends. Add a chronic illness with all that it entails (day-to-day management, organizing medical care, dealing with pain) and it’s a surprise any of us are still standing. Addressing the problem of fatigue requires a whole-person approach, starting with medical care, but it’s important to also consider just how unreasonably busy our lives have become and making some changes to how to live your life.

Despite the intense impact of fatigue, it’s often not considered as a treatment target. This is a significant gap in rheumatology practice. Most of the studies I reviewed on this topic emphasized the importance of assessing for fatigue and including it as a target for treatment.

How to talk to your doctor about RA fatigue

Researchers agree that fatigue increases what’s called your “burden of disease,” that is, the impact it has on your life. (7) Your rheumatologist is your partner in the fight to get you back on track and it’s important that they know how fatigue affects you. Use the Talk Over RA Discussion Guide to prepare for your appointment so you are clear on your symptoms and how they impact your life.

Your doctor may suggest tweaking your RA treatment to get the inflammation under control, order blood tests to check for other conditions that may affect your fatigue, or refer you to other specialists. Keep those lines of communication open so that you and your medical team are on the same page in terms of what should be a priority in your care.

The following are some of the ways I deal with my fatigue. They may help you, as well.

Pro Tips to Manage Your RA Fatigue

Consult an Occupational Therapist (OT). An OT is an expert in how to help you do tasks more efficiently, conserve energy, and reduce pain. Ask your doctor for a referral to an OT and before your appointment, think about the tasks at home and at work is that make you hurt or drain your energy. Again, the Talk Over RA Discussion Guide may be helpful in this process.

Talk to a Therapist. Living with an unpredictable chronic illness that affects and changes everything in your life is difficult, both physically and emotionally. Talking to a therapist can help you work through your emotional reaction to RA and build coping skills. You can search for a therapist in your area on the Psychology Today website, including those who use a sliding scale, virtual therapy, and more.

Rest When You Can. If possible, I highly recommend including naps in your daily schedule, but you can also find rest in other ways. Taking a moment to stretch can reset tired muscles, taking a walk to the kitchen to make a cup of tea disconnects work mode for a few minutes, having lunch on a park bench or your deck/balcony can feel like a siesta, and so on. When you find a few minutes (or more) to yourself, protect that time as sacred. Prioritizing giving your body rest only works if you set strong boundaries to protect it.

Try Meditation. Meditating can be a surprisingly effective way to rest and rejuvenate at the same time. If you haven’t tried it before, you can find free programs and guided meditations in apps like Calm, Headspace, and Insight Time.

Create an Energy Analysis. Think of your energy as you do your finances and create a budget. One of the first steps is to track where your funds are going or, in this case, your energy. For a week, set a reminder every hour and write down what you’ve been doing in a note app on your phone or a small notebook. Knowing what you do and when you do it is the first step to make the changes in your schedule that can help reduce your fatigue.

Do Less Than You Can. When I do less than I can, it helps me do something not just today, but also tomorrow and the next day. I also try to spread out tasks and make sure to include buffer zones between each. This creates room for my RA to be its unpredictable self without messing too much with my obligations.

Use Technology. Technology can help ease strain on your body and reduce pain, which in turn reduces fatigue. Try using voice recognition software to write (both Microsoft and Google Docs have built-in voice typing). Look for electronic tools that can help in your home, such as a battery-operated jar opener or a Roomba vacuum cleaner. If finances are tight, use birthdays and holidays to ask for help with the cost.

Automate Tasks. Technology enables you to “set it and forget it.” If you are a frequent social media user, use a platform such as HootSuite or AgoraPulse to schedule your content in advance so you only have to deal with comments on a day-to-day basis. Automation also works in your home, such as using a dishwasher or crockpot to do the work while you sit down and rest.

Ask for Help. Asking for help can be an act of love. The people who care about you want more than anything to make your life easier, but they can’t take RA away from you. Asking for help with an errand, a drive to the doctor, or decorating your living room for the holidays can make a difference for both of you.

Prioritize Your Life. When energy is limited, we eliminate tasks and events that don’t feel “essential.” But doing only the necessary — work, chores — can remove the parts of your life that help you keep going. It may take energy to spend quality time with friends and family, but it also gives you energy. Make sure you prioritize the things in your life that make living worthwhile.

Addressing the causes of your fatigue and finding a way to reduce this symptom can take time. As with many other things related to RA, coping with your fatigue is a marathon, not a sprint. Developing a toolbox up tips and resources can help you find a way to manage fatigue see you can have more life in your life.

I am a partner in he Talk Over RA event. That means I was paid for my work, but all content and opinions are my own.

Sources:

(1) Müller, Karolina, et al. “Self-reported fatigue in patients with rheumatoid arthritis compared to patients with cancer – results from two large scale studies.” SSRN Electronic Journal, 2021, https://doi.org/10.2139/ssrn.3848513.

(2) Druce, Katie L., et al. “Patients receiving anti-TNF therapies experience clinically important improvements in RA-related fatigue: Results from the British Society for Rheumatology biologics register for rheumatoid arthritis.” Rheumatology, vol. 54, no. 6, 13 Oct. 2014, pp. 964–971, https://doi.org/10.1093/rheumatology/keu390.

(3) Pardridge, William M. “Blood-Brain Barrier and Delivery of Protein and Gene Therapeutics to Brain.” Frontiers in Aging Neuroscience 11 (January 10, 2020). https://doi.org/10.3389/fnagi.2019.00373.

(4) Society for Neuroscience. “How Inflammatory Disease Causes Fatigue.” ScienceDaily. Www.sciencedaily.com/releases/2009/02/090217173034.htm (accessed October 16, 2023).

(5) Collins, Thomas R. “Eular 2015: The Biology of Fatigue.” The Rheumatologist, 28 Sept. 2023, www.the-rheumatologist.org/article/eular-2015-the-biology-of-fatigue/.

(6) Arthritis Foundation. “Fighting the Fatigue of RA.” Rheumatoid Arthritis Blog, Arthritis Foundation, 2 Aug. 2017, blog.arthritis.org/rheumatoid-arthritis/fighting-ra-fatigue/.

(7) Hammer, Hilde Berner, et al. “Fatigue is cross-sectionally not associated with objective assessments of inflammation, but changes in fatigue are associated with changes of disease activity assessments during biologic treatment of patients with established rheumatoid arthritis.” Clinical Rheumatology, vol. 40, no. 5, 11 Oct. 2020, pp. 1739–1749, https://doi.org/10.1007/s10067-020-05402-y.