At 23, I was on top of the world. I had my dream job as a writer and traveled all over North America to research stories. I bought my first townhouse. I was loving life.
After a trip to Montreal, I developed the flu. I was exhausted. I often got tired after trips, but this time was different. My hands were shaking, my joints were stiff, and my heart was racing. I could barely make it up the stairs. In the days following, my symptoms worsened. The pain felt even worse when doctor after doctor could...
“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.”