Understanding Fatigue in Lupus - and What Can Be Done

Special Report

Roberta Horton, LCSW, ACSW
Director, Department of Social Work Programs
Hospital for Special Surgery
If you have lupus, you probably know how bad fatigue can be. It's one of the most common symptoms reported by people with lupus. Most lupus patients suffer with it. But exactly what causes this fatigue that goes far beyond just being tired?

A study done at Hospital for Special Surgery some years ago suggested that depression and sleep problems might contribute to fatigue in people with lupus.[1] But in the women studied, those who had lupus did not have more depression than those who did not. However, those who had lupus took longer to fall asleep - and slept for longer periods of time.

Over the years, other researchers have also tried to figure out how sleep and depression might play a role. Others have suggested that lack of exercise might be involved - because exercise can actually give you energy when your muscles get fit.

New Research

A Canadian group of researchers explored the question and reported at a meeting of the American College of Rheumatology.[2] They studied 100 women with lupus. The women were given a series of different tests to look at:

  • the type of their fatigue,
  • how bad their fatigue was,
  • how bad their pain was,
  • whether they were depressed - and if so how badly,
  • how well - or poorly - they slept,
  • how much physical activity they did in their leisure time,
  • whether they were satisfied with the support they received from family and friends.

Finally, the women were examined by a doctor to see the level of their lupus disease activity and the impact lupus already had on their bodies.

What They Learned

As in other studies, they found that people with lupus have much more fatigue than others.

Fatigue can be influenced by everything they explored and more: depression, pain, quality of sleep, quantity of sleep, exercise, severity of illness, and satisfaction with your social support network - as well as flares, medications, and stress. And it varies from one patient to the next.

Because fatigue arises from so many different factors, they said treatment should try to find out what factors were involved in the patient being treated - and treat all of them to get at the fatigue. These factors can be treated - modified - changed.

Two Types of Fatigue

One thing that was different about their study was that they separated physical fatigue from mental fatigue. Many other studies have just looked at "fatigue" as one thing.

Think of physical fatigue as "I'm too tired to stand up," or "I just can't walk another block." That's easy to recognize - and you should listen to it. Rest. Sit down or just collapse in bed for awhile.

Mental fatigue can be more difficult to get a grasp on sometimes. "I can't think straight" or "I can't concentrate" or "I keep rereading this paragraph again and again" may be mental fatigue. Or it may be a sign of the cognitive (thinking) difficulties that are part of neuropsychiatric lupus. So any changes in your thinking or concentration should be reported to your doctor - because a change in medication may help. In the meantime, again, rest. Put the book down. Veg out in front of the TV. Cuddle up with your pet. (Studies have proven that stroking a pet can be very relaxing.) Or take a nap.

Physical Fatigue

It was not a surprise that people with more pain and poorer sleep were more likely to have physical fatigue.

Lots of research - in people without lupus - has shown exercise helps reduce depression. But this study had an interesting surprise. Only the lupus-fatigued women who did not score high on depression tests seemed to be helped by exercise. Lupus-fatigued women who were depressed did not get an improvement in physical fatigue from exercise. Does this mean you shouldn't exercise? No! You need exercise for heart fitness, muscle strength and to keep up your energy. It may even help your physical fatigue - because a finding from one research study doesn't apply to everyone.

But look to other means as well. Talk with your doctor about ways to improve your sleep and lower your pain level, especially by reducing your disease activity.

Mental Fatigue

The factors most related to mental fatigue were slightly different. They were clearly:

  • greater pain severity - again, talk with your doctor about how to reduce your pain level;
  • higher levels of depression - ask your doctor about referral to a licensed psychotherapist such as a social worker or psychologist. In some cases,r antidepressant medication may also be useful.
  • lower satisfaction with social support networks - talk with family and friends about what you need from them. Often they may not be aware of how you are feeling inside. Let them know what can help. Establishing an understanding together of the impact of fatigue and how to problem-solve around this is important.

How Do You Cope

Fatigue is profound. It touches you to the core. It can totally disrupt your life. Fatigue itself can be stressful and fatiguing. Because you cannot "see" fatigue, and it can change so much from hour-to-hour and day-to-day, your fatigue can also be confusing to those with whom you live and work. But it's not something you can point to like a swollen joint or a rash. You can be exhausted with fatigue and your friend or family member says, "You look great."

This can be very frustrating. You feel that others just don't get it. Over time, see if you can learn to respond comfortably and assertively to such comments. "I wish I felt as great as I look - but I'm really fatigued right now, and it's important that I rest and take care of myself."

Those words may not be right for you - but you need to find the words that are. Because when fatigue hits, you need to let go and rest. Give in to fatigue when necessary - so you can spring back. Take that temporary break - so you can stand up and think clearly later. Whether it's an hour later or a day later doesn't matter. You will find the right moment. And only you can. Because lupus fatigue is different for everyone - what causes it, when it hits, what helps, when it goes.

Be kind to yourself, work with your doctor, and you will find the path that's best for you. Just don't give up.

1.  McKinley PS, Ouellette SC, Winkel GH. The contributions of disease activity, sleep patterns, and depression to fatigue in systemic lupus erythematosus. A proposed model. Arthritis Rheum. 1995 Jun;38(6):826-34.

2.  Da Costa D, Bernatsky S, Pineau C, Lowenstyn I, Ménard H, Dritsa M, Dobkin PL, Clarke AE. Dimensions of Fatigue in SLE: Relationship to Disease Activity, Behavioural and Psychosocial Factors. Arthritis Rheum. 2003 Sep;48(9):S185. Abstract #387.|


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