I had always been an athletic, healthy person, but in my late 30s my body
started sending signals that something was wrong. I was tired all the time. I
had no energy. I even started losing my hair.
When I went to my doctor, the staff ran blood tests, but nothing ever
pointed to a specific diagnosis. I lost weight. I couldn't keep food
down. I developed a butterfly-shaped rash on my face. I saw other doctors; they
thought it was all in my head, and, for a time, they didn't believe I was
“I do experience the fatigue,” says Adjoa, who was diagnosed with lupus in 1993. “By 8 p.m., I often feel like I need to go to bed.”
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.”