“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.”

We’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.”

Other 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.

“I used to scoop my little grandbaby up and take her to the mall or whatever. I was there. Now, I can’t even take them to those places anymore. I can’t take my grandbabies to go fishing.”

Noticing that past research tended to look at one isolated measure such as white blood cell count, Barroso thought a look at many different factors could be more telling. CD 4 count (cells that are the primary targets of HIV) and viral load (the amount of HIV in the blood) acted as measures of disease progression. In 40 HIV patients, Barroso also examined immune, thyroid, and liver function, did a complete blood count, and measured both salivary cortisol and the strength of the cell membrane. Knowing that the virus affected so many systems in the body, Barroso thought the stability of the cell membrane might be disturbed.

Those same 40 people participated in psychological tests, in which three scales measured depression and anxiety and one scale Barroso developed measured fatigue.

Findings indicated that there was no relationship between either CD 4 count or HIV viral load and fatigue.

“Particularly telling was the fact that even though most of the sample had very good viral suppression, they still had really high fatigue scores,” Barroso says.

What the findings did reveal was a strong relationship between fatigue severity and both anxiety and depression. Certain hormones elevate if someone is particularly anxious. The mean score of the study participants was just above the level indicative of high trait anxiety (anxiety that a person experiences all the time). The participants also scored high on measures of depression—not surprising, since the preliminary study revealed sweeping disturbance in sleep patterns, a classic symptom.

If fatigue was related entirely to psychological stability, success in treating depression and anxiety might be expected to reduce fatigue. Not necessarily so. Seven people who were taking antidepressants had almost identical fatigue scores to the 30 who weren’t, though the medication managed to treat the depression and some anxiety. So even when medically treated for psychological symptoms, people are still exhausted. Barroso says that different routes for treating depression might decrease fatigue. She also wonders if there are physiological factors that were not clearly revealed in the findings.

“Physiologically, we have these glimpses of little things that look like sort of blips in the data set,” Barroso says. “They are worth following up.”

Still, Barroso advises care providers not to dismiss psychological factors or complaints of fatigue. If the patient is anxious or depressed, she recommends suggesting counseling, medication, or support groups.

Patients shouldn’t dismiss the fatigue either, Barroso says. Mary’s* exhaustion has consistently come and gone since her diagnosis in 1991, causing her to feel as if her “muscles are starving for oxygen.” Yet like Adam, Mary says it’s part of the program.

“I try not to ask for help because what I can do, let me do. I have those dragging days, but I make it through and hope I’ll feel better,” she says. “As a problem comes just tell it to take a number and get in line.”

A person doesn’t need to have full-blown AIDS to experience fatigue. Tests may indicate patients to be fairly healthy—asymptomatic even. On the other hand, Barroso’s research assistant Janet Meynell recalls one woman in the study who did not feel she had any fatigue as a result of the disease, though the physical numbers from her lab results showed she “should” be fairly ill. So, asks Meynell, how much of fatigue is the perception of the person, and are lab results a telling factor at all?

Barroso hopes to answer those questions in a longitudinal study that would include factors such as hormonal levels in women, testosterone in men, and cytokines—the body’s ways of fighting the virus. Barroso would like to collect data at the point when the fatigue affects the individual—ideally when he or she is most exhausted, enabling researchers to see how readings fluctuate with the level of fatigue.

“Back in the beginning of the epidemic we thought AIDS affected just the immune system,” Barroso says. “We know so much more now.” Her goal is to develop treatment options for health-care providers.

In the meantime, a bad day for Mary opens the door for a good one to follow. “I can’t let everything get me down because state of mind has a lot to do with how I do too,” Mary says. “I still have a life, and I’m going to live that to the fullest.”