by Jill Aitoro

"I was working at the office, and I had been up and down, having to go to the bathroom … the last time on the way there, I just had to stop and lean up against the wall to rest. I knew that something had to be done. I was not going to be able to continue like that."

e've all been tired. After a long day, we feel drained. A good night's sleep is usually all we need to feel refreshed. Unless we happen to be HIV positive.

While advances in medicine have led to a rapid rise in life expectancy for AIDS patients, those infected want relief from the exhaustion that accompanies the disease. Carolina researchers are trying to provide that relief.

"We are seeing now, especially as HIV becomes a manageable rather than terminal illness, that there are symptoms that really impact people's quality of life," says Julie Barroso, assistant professor of nursing. Barroso conducted a pilot study examining the relationship between physiological and psychological factors that accompany fatigue with HIV infection.

So, what is fatigue? Barroso says that, like pain, it is whatever the person feeling it says it is. Difficult to measure and subjective, perhaps; sweeping and debilitating, definitely. While statistics of the number of HIV patients affected by chronic fatigue are as low as 20 percent, Barroso has found in her experience as a clinician that the numbers are far more overwhelming—she estimates at least 60 percent.

Part of the reason for such a considerable range is that patients often don't want to take the attention away from treating the illness by talking about symptoms. "I feel lousy, I'm in pain, but save my life," is the mentality of many of those infected, Barroso says. People with HIV have been living longer since 1996, when the new potent class of drugs called protease inhibitors came out for use as part of drug cocktails (taking drugs simultaneously for a specific effect). But many wonder, what's the point of living 40 more years with such limited quality of life?

"Health care providers look at pure numbers. I think they're so used to the old way of things like T cells going from 80 down to 60 and then soon after, you die. Now they're saying ‘Well, gee, your T cells are 350, and your viral load is undetectable. You should be feeling wonderful.' And, you think to yourself, ‘well, I'm supposed to be feeling wonderful—what is wrong with me?' You try to push yourself, and you just can't do it."

ther patients discipline themselves to just deal with it. Many manage to incorporate the virus and its symptoms into what they try desperately to view as simply a new lifestyle. They deal with exhaustion the same way a person might struggle to kick a cold.

"Little things do not interfere with my life because of my will," says Adam*, who was diagnosed in 1997. "Little things like being exhausted are very minor to me." In the same conversation, Adam says he can remember lying on the floor of his office during the day because he was unable to sleep at night. For Adam, walking up the staircase is often difficult. If he is planning to go out on a Saturday evening, he takes naps in the afternoon—"sleeping marathons," he calls them. This extra sleep plus lots of coffee is how Adam deals with his fatigue. Barroso hopes research will discover ways to offer people like Adam better options.

"The research is so new because for years we were just trying to keep people alive—this frantic effort to hold off death," Barroso says. "It's been fascinating seeing this shift from survival management to symptom management."

Nurses and clinicians recognize the need for that shift because they have been at the bedside of a woman so fatigued she can't get through her day, a woman who wonders how she will care for her three kids.

Seeing nothing in medical literature with a good explanation or even extensive mention of chronic fatigue associated with HIV, Barroso in 1998 conducted a qualitative study in which she interviewed 31 people who dealt with this very real affliction. Her intention was initially to learn enough to help the HIV infected remain productive after they find themselves too tired to work or go about their normal routine. What she found were people whose relationships were suffering, whose ability to think and plan was affected; people who no longer could dress, cook, or do laundry; people who were not capable of raising their children as they chose.

Next: "We know so much more now."

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