Brunilda Nazario, MD
Fatigue is one of the most common symptoms of lupus. In fact, most people with lupus have fatigue at some point in their illness.
“When lupus hit, it was like running into a wall at 80 mph,” says Ann S. Utterback, PhD, a broadcast voice specialist in Virginia who was diagnosed with lupus in 2006. “I had been very active my whole life, and the fatigue just knocked me flat. Most days I have about four good hours.”
Experts aren’t certain what causes the fatigue of lupus. In some patients it may be caused by fibromyalgia, a syndrome of widespread muscle pain and fatigue. About one-third of people with lupus have fibromyalgia. In other cases, the fatigue can be caused by another condition, such as anemia or depression. Fatigue can also be a side effect of medication.
If fatigue hinders you, there are ways you can try to increase your energy with lupus. This article offers five key ways to cope with fatigue and boost your energy levels.
“Fatigue with lupus is sometimes caused by an underlying medical problem, such as anemia, fibromyalgia, depression, or a kidney or thyroid problem. And in some cases, it can be a side effect of medication,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and assistant professor of medicine and behavioral medicine at Rush University. “In these cases, we can often treat the fatigue by treating the condition or changing the patient’s medication.”
Ask your doctor to check if your fatigue may be related to another condition or a medication. If it is, find out about treatment.
Although working out may be the last thing you want to do if you’re feeling tired, exercise can actually boost your energy level.
“I started walking as soon as I could,” says Adam Brown, who was diagnosed with lupus in 2007, at age 23. “I couldn’t do much at first, but as soon as I started walking my energy level really jumped. Then I started walking everywhere, and my problems with fatigue literally went away.”
Although Utterback still deals with fatigue, exercise has helped her as well. “When I exercise, I can add another good hour to my day,” she says. “And when I don’t exercise, I definitely feel worse.” Because she experiences joint pain, Utterback usually exercises in a heated pool, which is easy on her joints. But she also walks and lifts weights.
“It’s important to get as much exercise as you can tolerate,” says Jolly. “For some people that may mean just a short walk, while others may be able to do a whole exercise routine. The key is to find what’s right for you. Listen to your body and let it be your guide.”
Don’t be afraid to push yourself a bit. “Some days I really don’t want to go to the gym, but I force myself to go anyway, because I know I’ll feel better once I exercise,” says Utterback. “One of the biggest mistakes I’ve made is not exercising when I feel really lousy. I’ve learned that if I can get on the treadmill and just do a few minutes, I end up doing more and feeling better.”
If you’re just starting exercise, be sure to start slow and be patient with yourself. Try to exercise during the time of day when you have the most energy and find something you like to do, whether it’s walking, bicycling, or taking an exercise class.
“Getting exercise doesn’t mean that you have to run a 5K,” says Brown. “Just do whatever you can. I’ve found that even just a bit of exercise can make a big difference.”
Most people do best with at least seven to eight hours of sleep each night. If you have lupus you may need even more sleep.
“It’s important to develop good sleeping habits,” says Jolly. “It can really make the difference in getting a good night’s sleep.”
If there are times when you know you won’t get a full night’s sleep, you may need to plan to make it up the next day.
“I can’t go out on a work night like other people my age. If I don’t get at least eight hours of sleep, I’m useless the next day,” says Brown. “So if there’s something I want to do in the evening, I have to plan for it by setting aside time to sleep the next day.”
Even with a full night’s sleep you may need to take several rest periods throughout your day. “Some people may need to plan short periods of rest after each activity,” says Jolly. “This gives your body time to catch up and can make a big difference in how you feel.”
It’s easy to feel overwhelmed by all the things you need to do. Keeping an activity schedule for day-to-day basics can be a way to help organize your time. This way, you can plan for the things you need to do and make sure you have enough time to rest in between.
When planning your schedule, do the things that are most strenuous when you feel your best. And try to break up bigger projects into smaller tasks. But try to be flexible. If you don’t have enough energy one day, don’t force yourself to do everything on your list. Reschedule those tasks instead.
“Every morning, I think about my day and prioritize the most important things I need to do,” says Utterback. “Then I decide what I can realistically handle. Usually it’s just three or four tasks. But I do what I can each day and try not to get upset with myself if I can’t get everything done.”
“One of the most difficult things for people with lupus is learning to say no,” says Jolly. But if you want to have energy for the activities that are most important to you, then it’s a must. Focus on listening to your body and saying no to activities you know will leave you exhausted. Do what you need to do for yourself.
Keeping a diary is a good way to track how you feel. “A diary can be a great tool to help you learn what types of activities make you feel good and what makes you feel lousy,” says Jolly. “It can really help some people connect the dots.”
Stress can also add to fatigue, so try to avoid activities you know will increase your stress level. Instead, try to build relaxing activities into your day.
“Having lupus forces you to look at your life differently, but it doesn’t have to be negative,” says Utterback. “Lupus has actually given me a lot of gifts, such as teaching me to slow down and learning how to put myself first.”
SOURCES:Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and Assistant Professor of Medicine and Behavioral Medicine at Rush University.Ann S. Utterback, PhD, lupus patient, Arlington, VA.Adam Brown, lupus patient, Baltimore.Lupus Foundation of America web site, “Exercise, Fatigue, and Photosensitivity.”National Institute of Arthritis and Musculoskeletal and Skin Diseases: “Patient Information Sheet #2, Preventing Fatigue Due to Lupus.”
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