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Living With Lupus

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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."

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