You wake up exhausted, drag yourself through the day, and keel over into bed with nothing left. This is rheumatoid arthritis (RA) fatigue. Many of us have been known to say that the pain is bad, but the fatigue is almost worse.
We are not talking about just being tired. RA fatigue is pervasive. To make others understand what it feels like, you can liken it to the fatigue that people feel when they have the flu. An editorial in the journal Rheumatology defined fatigue as “physical and/or mental exhaustion that leads to a marked impairment in normal activities, whether mental, physical, domestic, social, or occupational. It is not improved substantially by bed rest and may be worsened by normal levels of physical or mental activity.”
Living with a chronic illness is exhausting, and chronic pain certainly contributes to feeling like a wrung- out dishcloth. However, there is also a biological reason for RA fatigue.
Understanding RA fatigue
Previously, it was thought that the inflammation of RA causes fatigue. Cytokines—proteins involved in the inflammatory response—essentially make you want to rest. It’s a normal function of inflammation — it’s easier for the body to heal when you’re resting. The theory was that this caused the “sickness behavior” — fatigue, malaise, avoidance of social interaction — that many people with chronic illness exhibit. Especially relevant to those of us with RA, the tumor necrosis factor (TNF) is a pro-inflammatory cytokine with many functions and has been implicated in autoimmune diseases.
At the 2015 annual Congress of the European League Against Rheumatism (EULAR) it was reported that not only is there a biological basis for the fatigue experienced by people with rheumatic conditions, such as RA, but that this fatigue is also gene regulated. A Norwegian researcher presented the results of a study, stating his belief that interleukin 1 beta (IL-1-beta) is the fatigue cytokine.
New research shows that there may be more to the fatigue picture. It’s been believed that inflammation does not cross the blood-brain barrier, but a recent animal study is showing a different result. In a study of mice with inflamed livers, monocytes—a type of immune cells—were found in the brain. When the researchers blocked these monocytes from entering the brain, the mice were more mobile and sought more social interaction. That is, their sickness behavior improved.
Research that shows the biological and even genetic causes of the fatigue involved in RA is exciting news. Many people with RA fight against the fatigue, and the stigma associated with it. Knowing that there is a physiological reason for your exhaustion can be very empowering. It doesn’t make you feel less tired, though. So what can you do to combat the fatigue?
What you can do about RA fatigue
Traditional RA medication doesnt’t do much for fatigue, but the new biologic medications do have an effect. A UK study of over 6600 people with RA showed that 38.8 percent had a baseline of severe fatigue. When given anti-TNF therapy, 70 percent of these reported an improvement and 66 percent moved all the way to non-severe fatigue.
Anti-TNF medications are particular biologic drugs, such as Enbrel, Humira, Remicade. For many people who take these kinds of Biologics, one of the first signs that the medication is working is an increase in energy. Other biologics may also have this effect.
But this isn’t the case for everyone. In fact, levels of fatigue are not always associated with the level of inflammation.
Other causes of fatigue may include anemia (common in people with RA), side effects of pain medications, such as opioids, or diabetes. A fairly high number of people with RA also have fibromyalgia, which is characterized by chronic fatigue, as well as chronic pain. If your RA is under control, but you’re still tired, talk to your doctor about running some tests to see if you have any other medical conditions.
A big part of living well with RA includes managing your energy. Working within your limits, getting as much rest as your body needs, and being physically active can all contribute to preventing extreme fatigue. Other techniques include meditation, gentle exercise, such as yoga or tai chi, and regular vitamin B12 shots.
Do you experience the fatigue with your RA? What helps you manage the fatigue?
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s 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. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.