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"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."
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 depressionnot 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.
"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 healthyasymptomatic 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 cytokinesthe body's ways of fighting the virus. Barroso would like to collect data at the point when the fatigue affects the individualideally 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."
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