March 6, 2002 -- After the doctors, tests, and medications, it comes down to this: There's still no cure for lupus, and we still don't understand what causes it. Despite the availability of steroids and other drugs that can help with flare-ups, people with lupus still face frequent -- some would say daily -- fatigue, persistent pain, difficulty moving, and trouble sleeping. How can you manage these symptoms -- some call it "living with the wolf" -- and still lead your life?
According to Stephen Balch, MD, medical director of the Jacquelyn McClure Lupus Center in Atlanta, a coping strategy that works for one person with lupus may not work for another. So when considering what to do to combat fatigue, say, or deal with pain, he advises his patients to consider their options as a "menu."
"The easiest thing would be to be able to say 'Do steps one through 10 and you'll feel better,' but it doesn't work that way. If people try to do that, they get very discouraged, but what helps is trying a number of ideas," he says.
Fatigue and exhaustion are among the most difficult lupus-associated symptoms to cope with. Robert Phillips, PhD, a psychologist who directs Long Island's Center for Coping and has written several books on lupus, recommends some strategies you can try:
- Do some light exercises an hour or so before going to bed in order to get nervous energy out of the way.
- Don't eat any heavy meals shortly before bedtime.
- Try relaxation techniques, meditation, or visualization activities to settle your mind.
- If you have something big on your mind, write what's troubling you on a piece of paper before you lie down to help prevent it from whirling around in your head as you try to sleep.
Warm Milk Really Works
Balch suggests preparing your body for sleep through "association stimulus."
"If every night before you go to bed you read a book for 15 minutes, take 10 deep breaths, have a glass of warm milk, and then go to sleep, your body will start to associate those behaviors with sleep," he says. (Yes, that old standby, warm milk, really works: It affects your serotonin levels.) "It doesn't have to be those three things specifically, but if you develop your own pattern that works for you, your body will start to become used to it and you'll develop better sleep patterns," he says.
Modest exercise, most experts agree, can be one of the best ways people with lupus can combat chronic (long-term) pain. But how do you exercise when you hurt too much to get out of your chair? "Ideally, one of best exercises for anybody with joint-related problems is swimming. But unless you're a penguin, it's hard to do that all the time," Phillips says. If possible, he advises people with lupus to check out aquatics programs run by the Arthritis Foundation that are guided by experts. If you can't get there, though, he says, "There are a lot of things you can do at home. Just walk around your house. If you're really experiencing a lot of joint pain, do exercises for the joints that aren't bothering you. You can lift your arms up and down, twist your trunk, or do breathing exercises -- things that are low impact. The more you do, the more you start empowering yourself."
Balch agrees, but cautions lupus patients against doing too much exercise, noting that some people plunge ahead, determined to do as much as the guy next to them at the gym -- and give up due to exhaustion. "I have my patients shoot for walking 15 to 30 minutes, three times a week, at a pace of one to two miles per hour, or doing water aerobics for the same time. I think those are the two best exercises for people with lupus."
Other techniques for blocking pain and improving mobility, say Balch and Phillips, include biofeedback, hypnosis, imagery, meditation, tai chi, and yoga. "Do what works for you, with the least side effects," says Balch. That may mean trying out a few options: Don't give up just because the tai chi that worked for your friend did nothing for you.
Managing the Mental Factor
But all of these strategies can only go so far, Phillips cautions. "Any symptoms that you can't eradicate through various methods must be dealt with by learning to cope with things you cannot change," he says. "This can be even more critical, because one of the most frustrating things about living with lupus is having restrictions imposed on you by the disease that you can't change."
First, he suggests, identify the negative thoughts. What's bothering you when you think about what you can't do? If, for example, you're having trouble moving around and are walking more slowly than you used to, maybe you're thinking, "I'm miserable because I can't walk faster. First, you need to acknowledge your unhappiness about that restriction, and then ask, 'Are there people who have a similar physical restriction but handle it better?'" says Phillips.
"The answer is always yes. And you can do that too. Your emotional state and the way you feel about yourself don't have to be tied to physical problems. You can acknowledge them, but then think, 'How do I feel good about myself despite this?' The more people learn this strategy, the better they can learn to feel even if nothing changes as far as the disease," he says.
Reviewer: Beth Israel Deaconess Medical Center. Reviewed for medical accuracy by physicians at Beth Israel Deaconess Medical Center (BIDMC), Harvard Medical School. BIDMC does not endorse any products or services advertised on this Web site.