I hate the pain,” said Marcie, a 44-year-old mother of two, to her rheumatoid arthritis (RA) support group. “But if I had a choice, I’d rather lose the fatigue. I can fight through pain, but with this, it’s like I can’t be a real mother, wife, or friend. I’m so tired all the time. I feel like I can’t keep up with life.” Marcie’s sentiments will be familiar to most people with RA. Rheumatoid arthritis fatigue does not seem to be just a side effect; it’s a basic symptom of RA. One study of people with RA found that 80% experienced clinically significant fatigue, with 50% experiencing severe fatigue. In an editorial in the journal Rheumatology, rheumatologists Selwyn C. M. Richards and Sarah L. Westlake 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.”
As Marcie described, fatigue can be disabling. A study published in the journal Arthritis Care & Research found that less fatigue was among the top five outcomes that people with RA regarded as priorities. (Other priorities were less pain, being able to do everyday things, and having more mobility.) But what actually causes RA fatigue?
RA is an inflammatory condition, and scientists used to think that inflammation caused all the fatigue. Some inflammatory chemicals called cytokines make you want to stay in bed. That’s why having the flu knocks you out; inflammation wants your body to rest so it can fight the infection. Some of these same cytokines can increase pain, probably for the same reason, to get you to slow down.
More recently, Canadian researchers experimenting with mice found that inflammation in a mouse’s body could cause white blood cells called monocytes to enter its brain. The monocytes seem to tell the brain, “We’ve got a problem. Keep the body in slow motion until we can get it under control.”
You may have noticed that your fatigue is worse during an arthritis flare-up. That connection would also hint that more inflammation causes more fatigue. But fatigue turns out to be more complicated than that.
In a recent study published in Rheumatology, French researchers reported that the level of inflammation in the body had only a weak connection to levels of fatigue in people with RA. Some people could be highly inflamed, with significant joint damage, and still not feel very tired. Other people could have much less damage and inflammation, but feel exhausted.
By analyzing several large studies of biologic drugs (such as adalimumab, brand name Humira) the researchers showed that these drugs usually reduce inflammation and joint damage, but they have only a small effect on fatigue.
In their editorial discussing this study, Richards and Westlake commented that “It is a mistake to think of fatigue in RA as being a direct result of disease activity.” So what else could be causing it?
Other causes of rheumatoid arthritis fatigue
Many other medical problems besides arthritis can cause fatigue. Examples include the following conditions:
- Anemia, or low red blood cell counts
- Underactive thyroid (hypothyroidism)
- Low testosterone levels, especially in men
- Undiagnosed heart disease
- Side effects from drugs, especially pain medicines
- Diabetes (Research has shown that people who have RA are 50% more likely to develop diabetes than people who don’t have RA.)
- Adrenal insufficiency
It’s relatively easy and worthwhile to be checked for these potential causes of fatigue. In most cases, some simple blood tests will show whether any of these conditions may be affecting you.
If these medical causes of fatigue are ruled out, you’ll have to look at other potential causes, such as your environment and the way you live in it. In the editorial in Rheumatology, Richards and Westlake wrote that “Persistent or chronic fatigue is largely driven…by factors [such as] anxiety, depression, pain, sleep disturbance, and disability.”
Those causes usually can’t be cured with drugs, but they need to be treated and managed. But what can be done about them?
Because there are so many causes of fatigue, there are many ways of treating it. It’s certainly worth trying some different arthritis drugs to see if one or more of them helps. You might ask your pharmacist or rheumatologist which ones might be right for you, because studies haven’t yet shown a clear best choice. Until you try, you don’t know whether a high-tech biologic, some other prescription medicine, or an over-the-counter drug will perk you up the most.
Two drugs to consider may be modafinil (Provigil) and armodafinil (Nuvigil). They are approved for treating sleepiness in people who have sleep disorders (such as narcolepsy and sleep apnea), but many people with arthritis and other inflammatory conditions find that these drugs greatly improve their energy levels. One user on an arthritis forum commented, “I have had RA for 27 years…I was always exhausted and would sleep 16 hours a day, and a nap or two in addition. The doctor gave me [modanifil] samples, and what a turnaround.” Another wrote, “This medication has brought my mind back to me and energy that I have not felt for a very long time. For anyone with RA…I would recommend this to help them make it through the day.”
There are lots of nondrug options available for fighting fatigue as well. Nutrition is one key to energy level. Refined carbohydrates have been shown to cause fatigue after providing an initial energy rush. Try eating more vegetables and nuts instead. Ronenn Roubenoff, MD, Adjunct Professor of Medicine and Nutrition at Tufts University, recommends taking vitamin B6, vitamin B12, and folate supplements. Many experts also recommend fish oil for increasing energy, and a recent study showed that breast cancer survivors who consumed more omega-3 fatty acids — at least partly from fish oil supplements — were 23% less likely to feel fatigued than those who consumed less. Studies have also linked skipping breakfast and dehydration with increased fatigue, so making sure that you eat breakfast every day and drink plenty of fluids can help keep you energized.
If ordinary tasks such as getting dressed or climbing a flight of stairs are tiring you out, physical therapy (PT) or occupational therapy (OT) may help. A physical therapist can help you increase your strength and flexibility with exercises tailored to your needs and abilities, and an occupational therapist can show you better ways to accomplish daily tasks or get you assistive devices to help. Although PT and OT appointments can sometimes be tiring themselves, learning easier ways to do daily activities can save a lot of energy over the long term.
In their editorial, Richards and Westlake point out that research has shown some benefits for using cognitive-behavioral therapy (a form of psychotherapy) and gentle, “graded” exercise to combat fatigue. Cognitive-behavioral therapy can help you deal with stressful thoughts and emotions that can contribute to fatigue. Graded exercise builds your endurance slowly and gently over time — see the “Try graded exercise” section below for more details on how it works.
Self-managing rheumatoid arthritis fatigue
For most people, the best treatments for fatigue involve steps they can take to help themselves.
Get more sleep
Getting enough sleep is a critical factor in combatting fatigue. Studies have shown that 30% to 75% of people with arthritis report difficulty sleeping, and that people who couldn’t sleep were twice as likely to visit a doctor about their pain. Getting more and better sleep often lessens both pain and fatigue.
According to sleep expert James Maas, PhD, most people in modern societies do not get enough sleep. Before the electric light was invented, a person’s average sleep time was 10 hours a night, which Dr. Maas’s team says is “ideal for optimal performance.” The average sleep time has dropped steadily since then. Now Americans average seven hours a night, and fully one-third of them sleep six hours or less.
When you have arthritis, sleep becomes even more important, but many people feel guilty if they sleep more than eight hours. Or they may feel that needing more sleep means admitting they are really sick. If you can manage it, though, it might be helpful to embrace the idea of sleeping 10 hours a night or even longer.
But what if you have trouble sleeping? It may help to try to relax before going to bed. It’s very hard to sleep with stress, tension, anger, fear, or pain hanging over you. The saying “don’t go to bed angry” isn’t just marriage advice. It helps to have a routine for settling yourself down before bed (often called a “bedtime ritual”). If something is stressing you at bedtime, ask yourself if you can resolve it, write it down for consideration tomorrow, or meditate or pray about it before trying to sleep.
If you still have trouble falling asleep or staying asleep, you might want to consult a sleep specialist. Get tested for sleep apnea. Make sure that you have a comfortable bed and a quiet, dark room. If you can’t make it quiet, consider wearing earplugs.
You may also want to start your day an hour or so later in the morning, if possible. The extra time will allow you to sleep longer. Naps are also helpful. In 2009, Harvard Health Letter reported that “new research suggests adding daytime sleep to your schedule as a way to make up for the normal, age-related decay in the quality of nighttime sleep.”
Along with increasing sleep, reducing stress can make a major difference in your energy level. Engaging in daily relaxation, meditation, or prayer for at least 10 minutes can reduce stress. Getting help with difficult situations — whether it’s practical help or just a shoulder to cry on — also makes it easier to cope.
Try graded exercise
The other crucial element in the fight against fatigue is moving your body. When you’re fatigued, the idea of exercise may seem frightening. And actually doing it may be counterproductive, leaving you feeling weaker and in more pain. But without movement, joints and muscles get stiffer and lose strength. To solve this “damned if you do, damned if you don’t” problem, rheumatologists recommend graded exercise.
Graded exercise is exercise that starts out slowly and increases in very small steps. Engaging in graded exercise means that you have a plan for keeping your exercise gentle and that you stick to it, even when you’re having a good day and feel like doing more.
An example of a graded exercise plan, offered on the WebMD Chronic Fatigue Syndrome Health Center, is to “start by walking, bicycling, or swimming as little as five minutes every other day for two weeks. Then, if you feel strong enough at the end of two weeks, adding two to five minutes to your exercise for another two weeks, and so on.”
According to a University of Georgia study, low-intensity exercise can reduce fatigue in people by up to 65%. In fact, the study found that gentle exercise was actually more energizing than more vigorous exercise for people who had not previously engaged in exercise regularly.
Gentle exercise could include tai chi or qi gong, water exercise, yoga, walking, seated exercises, or anything else that feels good. All of these activities can be modified for your personal condition. Walking in a warm pool can be gentle, supportive, and energizing. Make it pleasurable. It’s even better if movement gets you out in nature and out in the sunshine.
To feel better, you don’t even need formal exercise. In her book Arthritis: Stop Suffering, Start Moving (Walker & Company, 1995), author Darlene Cohen (who has RA) writes that housework can be turned into a form of exercise by concentrating on the movements as you do them. Even the warm water for dishwashing can feel good on your wrists and hands.
Taking steps to reduce your pain — especially before and after exercising — may also help increase your energy. University of Iowa researchers studying mice have found that muscle pain and fatigue are biologically linked and may not be independent conditions. You may want to consider using nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen (Advil, Motrin), heating pads or warm water therapy, an electrical stimulation unit such as a transcutaneous electrical nerve stimulation (TENS) unit, or massage when you are feeling pain. Applying cold to joints after using them also helps some people reduce pain.
Choose your company
Fatigue has a strong social dimension. Some people can make you feel more alive, while others make you want to crawl into bed and pull the blankets over your head. When you’re fatigued, you have to learn to say no to people and requests that wear you out. And you’ll want to ask for help from the people you like to be around.
Of course, it helps to be pleasant to them, too. Cheri Register, author of The Chronic Illness Experience (Hazelden, 1999), suggests, “Be specific about requests for help, and try not to ask for all your help in one place.” You don’t want to burn out your supporters, but if you keep requests simple and specific and keep a positive attitude, people will want to help you.
Keep records of your symptoms
A basic self-management skill is keeping a log of your symptoms. Keeping a fatigue diary can help you discover the causes of your fatigue. Two or three times a day, record your energy level and what has been happening at that time. Note the times of the day or week when you feel fatigue and what seems to trigger it. You may see patterns involving activity, medicines, food, stress, or other factors you can change.
The operative phrase in managing fatigue is “gentle persistence.” Fatigue teaches you to be gentle with yourself and with others. When you have arthritis, you can’t push too much. If you only slow down when your body stops you through fatigue or pain, your symptoms will increase until they make you stop.
But while you may have to slow down, you can’t give up. Fatigue eases when you learn to regulate your activities and not do too much, while continuing to do what you comfortably can with gentle but consistent effort. By being good to yourself, by adopting a rhythm and activities that are right for you, and by taking some steps like the ones described in this article, you can rebuild your energy.