Artist and children’s book illustrator Adjoa B., who asked that her last name be withheld to protect her privacy, knows what it's like.
Now 54, the Annapolis, Md. resident says that she hasn't had the overwhelming fatigue described by some of the patients in her lupus support group. But she says she needs more sleep than she used to. And some days, she says, she gets so tired she can’t do much of anything.
“On those days, I throw in the towel and just go to bed,” she says.
Experts do not fully understand the causes of fatigue.
“Fatigue is so frustrating for patients, but we don’t know much about it,” says Maria Dall’Era, MD, director of the Lupus Clinic and Rheumatology Clinical Research Center at the University of California, San Francisco. “A patient can be doing well, their kidney problems resolved, etc., but still they have profound fatigue, and we don’t understand why.”
Lupus is a chronic, inflammatory disease that causes your body’s immune system to attack healthy tissues and organs, and can damage your skin, joints, and other parts of your body. As many as a million people in the U.S. are believed to have the most common form of the disease, systemic lupus erythematosus, and 90% of them are women. Fever, joint pain, skin rashes, and headaches are among the many symptoms experienced by people with lupus.
Although there is no cure for lupus, the disease can often be kept at bay by medications. However, no drug has proven effective in countering lupus-related fatigue.
“Medication-wise, there’s really no specific therapy,” for lupus-related fatigue, says rheumatologist Thomas Grader-Beck, MD, a lupus specialist and assistant professor at Johns Hopkins University School of Medicine. “Patients are often left to themselves because there’s not a lot of evidence or clear ways to help the patient.”
Other Possible Causes
Adjoa, whose lupus is in remission, says that it is hard for her to tell when it is her lupus causing the fatigue or something else entirely.
“It could just be me getting older,” she says with a laugh.
It could also be any number of other causes -- some lupus-related, others not.
“Is it associated with any manifestation of the disease, such as kidney failure or anemia?” Grader-Beck asks. “We treat those manifestations and hope the fatigue had to do with those manifestations. But frequently, that doesn’t work.”
Other conditions can also cause fatigue. In her practice, Dall’Era screens patients for hypo- and hyperthyroidism, anemia, and heart disease, all of which are possible explanations for a patient’s fatigue.
Lifestyle May Help
Dall’Era and Grader-Beck say that lifestyle changes have made an impact on their patients’ fatigue.
“I always counsel my patients on common-sense health patterns – healthy diet, sleeping well, and regular exercise,” Dall’Era says. “I can’t point to a study that proves it’s true. There’s no high-level data. But my clinical experience and intuition points to that they are very important.”
She advises her patients to walk, swim, and do whatever exercise they can do. “Exercise combats fatigue, though it may sound counter-intuitive,” Dall’Era says.
“I think if patients can be motivated to exercise it will make a difference,” says Grader-Beck, who recommends that patients start slowly and that they find an exercise partner or group to help keep them motivated.
Keeping a healthy diet also may help reduce fatigue. Grader-Beck says that many lupus patients have low levels of vitamin D, so he makes sure his patients get enough so that their levels are in the high end of the normal range.
Patients are not the only ones who are frustrated by lupus-related fatigue. Because there are no biomarkers for fatigue, there is no way for doctors to measure it. And, Grader-Beck says, as long as that is the case, there is no way to know how effective any intervention will be. But he’s hopeful that things will change in the not too distant future.
“Researchers are working on how to quantify fatigue so that we can see how it is over time and how well if at all our treatments are working,” Grader-Beck says. “In the last three to four years, a lot of groups have been working on that.”
In the meantime, much of it comes down to healthy self-care. Adjoa says that she has found it quite helpful to pay attention to how she’s feeling and not push herself beyond the limits set by her lupus.
“There are adjustments that I have made,” she says. “When I feel exhausted, I respect that and get some rest.”