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Rest for the Weary
by Tim Murphy
Tired of being tired? You’re not alone in fighting fatigue, an invisible but exhausting side effect of life with HIV.
I can’t remember the last time I woke up in the morning and said, ‘Ah—I feel so well rested!’” says Kent Lebsock, of New York City, who was diagnosed with HIV in 1993. Lebsock, 53, recently got off disability and began a new job as a legal secretary. But his persistent fatigue was dragging him down. “I [would] crawl home at night,” he says, sounding, well, weary.
Lebsock isn’t alone. In a 2003 study published by the Journal of Pain and Symptom Management, 37 percent of people with HIV said fatigue was the primary reason for a doctor’s visit or that it was so bad that they had to stop working. (In contrast, some 0.3 percent of all Americans experience debilitating fatigue, according to the Centers for Disease Control and Prevention.) What’s more, many people—including doctors, who often read good lab numbers as a sign that all’s well—ignore or trivialize fatigue because it’s not visible. “When I say that I don’t feel like doing something because I’m too tired,” Lebsock says, “my friends take it as an insult.”
It’s often hard to trace fatigue to a single, treatable cause. “People always ask, ‘What’s causing this?’” says Judith Rabkin, PhD, a Columbia University psychiatrist who has been studying fatigue in people with HIV for 21 years. But answers are hard to come by. Fatigue was easy to understand in the years before combo therapy, when people had rock-bottom CD4 cells and a host of AIDS illnesses. It’s trickier to pinpoint the cause now, when many people have robust CD4 cell counts and undetectable viral loads. Rabkin points out that in the 2003 study, CD4 and viral-load counts did not seem to explain fatigue levels.
That said, there is a method to weed out possible culprits. Start with the basics—no matter how obvious they may sound: Are you really getting enough sleep each night? (Adults need seven to eight hours.) Eating regularly and properly? Keeping alcohol consumption to a minimum and not smoking or doing drugs? Exercising at least moderately? A “no” to any of those questions could explain your weariness. Better yet, you can address any of these areas with relatively easy fixes (fewer donuts, more lean protein and whole grains, getting up off the couch!) and/or with professional help.
If you’re sleeping, eating and exercising properly, it’s time to talk seriously with your doctor about other potential reasons for your fatigue (insist on it; if he or she won’t listen, find another doctor). Labs and other tests can screen out some ma-jor contributors to fatigue, including any number of infections (from herpes to hepatitis and beyond), advancing HIV (especially if you’re not on HIV meds), anemia (a drop in red blood cells or hemoglobin, the protein on those cells that carries oxygen throughout the body) and low testosterone or a deficiency in your adrenal glands. Major depression, stress and anxiety also cause fatigue. Make sure your doctor screens you for those and helps you seek treatment accordingly. If the onset of your fatigue coincided with a major addition or change in your HIV or any other meds, that could also be a factor—and worth adjusting.
But don’t go overboard in your search. “You don’t have to chase down some obscure physiological variable,” says Julie Barroso, PhD, an HIV fatigue expert at Duke University School of Nursing in Durham, North Carolina. That’s partly because a combination of several factors may be causing your fatigue. In Lebsock’s case, he has serious depression, asthma and hepatitis C, along with HIV, and he’s on meds for everything except hep C. (“The fact that I’m alive is a miracle,” he laughs.)
Even if you can’t locate the precise cause, you can lessen or cope with fatigue. This often involves finding the balance between challenging it and accepting it. For Lebsock, his job takes major effort. So when he’s off the clock, he decompresses with laid-back home improvement projects in his apartment.
Some pharmaceuticals and supplements can boost your energy (see sidebar). Therapy, counseling or a support group may help you view your fatigue differently or devise new strategies for managing it. And most important: Keep looking for new ways to beat fatigue. As for Lebsock, he’s considering enrolling in Rabkin’s new study of Provigil (modafinil); she previously found that this antinarcolepsy drug can boost energy in seriously tired people with HIV whose fatigue does not have an obvious cause. Lebsock may even manage to fit a little light gym time into his life. “I’ll try anything,” he says—with more oomph than you might expect.
Tips on Tackling Fatigue
KEEP A FATIGUE DIARY
Daily, track the times when you’re most and least fatigued. “For some people, mornings are awful,” Julie Barroso, PhD, says, “so don’t schedule important appointments then.”
GET A BETTER NIGHT’S REST
Daytime fatigue often stems from poor (or too little) sleep. Don’t go to bed with the TV on; keep your room comfortable; and don’t use the bed for anything but sleep and sex. Sleep experts also suggest going to bed and getting up at the same time every day—weekends too—to keep your body’s sleep rhythm. Visit cdc.gov/sleep for more info.
Antidepressants, testosterone therapy or stimulants like the antinarcolepsy drug Provigil may provide an energy boost. (New Yorkers interested in a Provigil study can call Judith Rabkin, PhD, at 212.543.5762.) But beware the “up” of illegal stimulants such as cocaine or crystal meth—it’s usually followed by a devastating crash. Not to mention the negative impact these addictive drugs can have on HIV-med adherence.
Consider trying a good multivitamin, a regular B-12 shot, the testosterone precursor DHEA, a Chinese-herb formula called Marrow Plus or other supplements, says George Carter, of the Foundation for Integrative AIDS Research (fiar.us). But don’t take anything without talking to your doctor about potential drug interactions!
Therapy may help, but if you can’t afford it, try to find a support group, including the online groups at forums.poz.com. Talking with other fatigued HIV-positive people can help you both fight fatigue and learn to live with it.
TAKE A WALK
Strange as it may sound when you feel too tired to get out of the chair, gentle exercise can increase your energy. It can also calm anxiety and ease other emotional causes of fatigue.
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