RA Fatigue Is Not the Same as Being Tired

Fatigue from this disease isn't the same as missing sleep last night. Here's what it really feels like.

by Lene Andersen, MSW Patient Advocate

Profound fatigue comes hand-in-hand with my rheumatoid arthritis (RA) and it is with me always. No matter how long I sleep, it’s there when I wake up and there when I turn on my computer to do some writing. It follows me throughout the day to lunch, makes me fuzzy-brained during a talk with friends, weighs me down as I try to keep up with the tasks of the day (and usually fail), and it haunts my every step until I finally fall into bed. You, too? Let’s take a look at how to explain this bone-crushing exhaustion to others and some workarounds so you can actually focus on your life.

I am not alone in being tired. Up to 80% of people with RA experience some level of fatigue and over 50% live with severe fatigue. The inflammatory response of RA is one of the main drivers of fatigue, but even people who are in remission from RA may have it. It’s far more complex than simply being tired: An article in Rheumatology described it as a combination of lack of physical and mental energy, emotional fatigue leading to frustration and depression, as well as living with pain and exhaustion while you perpetually try to catch up to your life.

Think of anything battery-powered, such as your phone. A brand-new phone (a.k.a. your average healthy person) will last through an entire day of YouTubing, but with an older phone (a.k.a. your average person with RA), the battery doesn’t hold the same kind of charge, even if it has been plugged in overnight. In human terms, a person with RA may move more slowly and runs out of steam in less time than someone without it.

The stats and the facts don’t explain just how much this exhaustion interferes with enjoying your life. It’s why many in the RA community will say that the fatigue is worse than the pain. On most days, I would agree, and here’s why it feels that way: You have tools to chip away at pain—medication, ice and heat, gentle stretching, physical therapy—but there are fewer obvious remedies for fatigue. There are days when I feel utterly hopeless and doomed to lifelong exhaustion, but at other times, I remember that I do have a few tricks up my sleeve to help me fight back. These are the workarounds I use:

Face the facts. Fighting against your fatigue spends precious energy you need for other things. There is a profound relief in accepting the fact that not only do you have a chronic illness, but that it’s actually changing how you lead your life. Acknowledging this is the first step to unapologetically do what you need to in order to feel as well as possible. It’s also a bit of a journey that can be greatly helped by some counselling and checking in with the RA community to connect with others who know how you feel.

Stay as healthy as possible. Ironically, my RA meds come with side effects that include fatigue, but that tends to last just a few days. My overall energy levels are much better when my RA is suppressed, as are my general health and pain levels, so I am diligent about taking my meds. RA isn’t the only condition that can cause fatigue, so I try to stay ahead of the usual exhaustion suspects. This includes regularly getting a full panel of blood tests to check that my iron, thyroid, and sugar levels are where they should be. I also find that taking certain vitamins, such as vitamin D and B complex (B12 shots are my not-so-secret weapon)—it might be worth asking your doctor about whether these might help you, too.

Taking care of your health also includes staying hydrated and eating a healthy, balanced diet. For me, that means leaning into diets that have been shown to fight inflammation. I combine the Mediterranean diet—loaded with fresh vegetables and fruit and omega-3-rich foods like salmon—with gradually increasing the number of my meals that are plant-based.

Get more rest than you think you need. People with RA often need more sleep, so consider going to bed earlier. As well, if you can squeeze in a nap during the day, don’t listen to that inner voice telling you that is unnecessarily indulgent. It isn’t when you have RA—in fact it can be very necessary—and it could make a huge difference in how tired you feel and likely also how much pain you have. But if there isn’t room for a nap, there are other ways you can build in a moment of rest. Take 10 minutes between tasks to breathe and make a cup of tea, try meditating, have a chat with a friend, read, stretch, and linger over a meal. Basically, take your time and slow down a little, which might improve the quality of your life.

Be loud, be proud. It’s normal to feel shy, even slightly guilty, about openly admitting you just don’t have the energy you once did. But remember there is nothing shameful about having a chronic illness and you don’t have to make apologies to anyone. That said, it might help the people in your life (yes, even your doctor) understand if you get very specific about how fatigue affects your life. Use the phone-battery analogy if that makes sense to you or try out the Spoon Theory.

Explain that you’re a zombie if you go out in the evening, that hosting a few friends for Sunday brunch takes you three days of recovery time, or that you don't have the stamina for a long walk anymore. Talking about the impact fatigue has on your life will help your surroundings adapt to the new reality and perhaps start a conversation with your doctor about tweaking your treatment.

Let’s get real: Managing RA fatigue can be very similar to managing chronic pain—it’s about chipping away at the problem until it gets small enough that you can live your life around it. Getting there takes time, experimentation, patience, and the willingness to shift what you do and how you do it to something that supports creating a new way of life. Perhaps like me, that includes a daily nap, or maybe you get there in other ways. In the end, slowing down to reduce your fatigue might be just the thing you need to get more enjoyment out of your life.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.