From the Archives: Fall 2005 Issue of Lupus Now Magazine
Foiling Fatigue. It may be a constant duel, but strategic thinking will help you win
by Emily Wojcik
When Persha Gregg, 26, began feeling tired, she attributed it to her busy lifestyle. "I'd lie on the bed thinking, 'Get up, get up!'" she says from her Maryland home. "But since my job requires a lot of energy-I'm an activities coordinator for adolescents with behavioral problems-I just thought I was exhausted."
When Gregg was diagnosed with lupus in 2003, it was both a relief and a frustration. "I used to be very upbeat, but now sometimes I don't want to do anything."
Gregg isn't alone. In a recent study, Graciela Alarcón, M.D., the Jane Knight Lowe Chair of Medicine in Rheumatology at the University of Alabama at Birmingham, found that 86 percent of her lupus respondents suffered from some form of fatigue.
"In some patients, fatigue constitutes the most important clinical manifestation of lupus," Alarcón says.
Cindy Mendelson, Ph.D., R.N., an assistant professor at the University of New Mexico-Albuquerque's College of Nursing, agrees. Her research focuses on women's self-management of lupus, and she says, "Fatigue is something people are constantly managing, even when they think they aren't."
Part of the problem is the nature of fatigue. "It's hard because I'm such a perfectionist," says Gregg. "I get groggy and agitated, but if I nap I get more tired."
Mendelson says the reason is that fatigue is not the same as being tired, "Many times, you might wake up fatigued because sleep is not restorative." Instead, "Fatigue tends to be a pervasive symptom," says Alarcón. "It is unclear why fatigue occurs, but it is associated with disease activity, pain, age, as well as poor physical and mental functioning and poor social support." What's more, "no medications have proven to improve it and enhance energy levels."
So fatigue is hard to cope with -- especially during stressful times, like holidays. And while there's no cure for fatigue, there are ways to manage it:
- Talk to your doctor. Because fatigue is often associated with medication for lupus complications, it can be managed. "Have a conversation with your doctor," suggests Mendelson. "If a certain pill promotes sleep, perhaps you can take it close to bedtime."
- Think strategically. "Imagine waking up with a bucket of energy for the day," says Mendelson. "That's all you get, so you need to evaluate the contents and ration it out." Work with your energy level: If you have more pep in the morning, use that time to get things done so you can rest in the afternoon. "The more you fight, the more stress you create, which can lead to flares," she says.
- Don't abandon your healthy habits. Your energy is only as good as your fuel-think lean protein, vegetables, nuts, and fruit. If you have a steady exercise routine, try to keep it up. "Healthy food choices and exercise within your tolerance help you stay in shape and maintain good patterns," says Mendelson. "Don't abandon that for the holidays."
- Focus on sleep during stressful times. Alternate activities with periods of rest throughout the day, says Alarcón. This will not necessarily prevent fatigue but may dampen its effects. Establishing good sleep patterns is crucial for maximizing your daytime wakefulness. Go to bed at the same time every night, says Mendelson. Avoid caffeine and stimulants in the afternoon, and use relaxing rituals such as reading to promote sleep.
- Be selective and plan well. Alarcón recommends shopping for gifts throughout the year and prepping dinners in advance, so nothing is left to the last minute.
Ultimately, coping with fatigue requires you to accept some adjustments to your limits. If you do that, you'll be less likely to push yourself to exhaustion.
"It all boils down to my perspective," says Gregg. "I try not to think, 'Why me?' but, 'How can I live my life the way I want?' Finding moderation and not sitting around thinking, 'I can't do this or that,' has helped me realize that I can handle this."