Living With Fibromyalgia and Chronic Fatigue

Jackie Yencha is somebody who gets things done -- as much as possible. She has been coping with fibromyalgia and chronic fatigue most of her life. But she pushed through college, got married, is raising two kids, and holds a top-level volunteer position with a fibromyalgia advocacy agency. She and her family even organize a charity golf tournament every year to honor her mother, who died of a rare cancer.

She'd like to do more than that -- but that's just not going to happen. Yencha is always fighting sleep problems. "I literally get sick if I don't get sleep," she says. Even on good days, her energy level may fizzle early. "Fatigue is my biggest problem," Yencha tells WebMD. "I've had to give up a lot of things because of the fatigue."

Fibromyalgia and chronic fatigue syndrome are considered separate but related disorders. They share a common symptom -- severe fatigue that greatly interferes with people's lives.

Insomnia -- and the lack of deep, restorative sleep -- is a big part of the problem, explains Mary Rose, PsyD, a clinical psychologist and behavioral sleep specialist at Baylor College of Medicine in Houston.

Sleep and Fibromyalgia Fatigue

When Rose first sees a patient with fibromyalgia syndrome and chronic fatigue, she makes sure that other causes of fatigue, like anemia (low blood count) and thyroid problems, have been addressed.

Improving a patient's sleep is an important part of easing fibromyalgia fatigue, Rose tells WebMD. "We know from research that sleep improves mood, pain, and in general how people feel during the day. Regardless of the reasons for the chronic fatigue, if we can get some control over quality of sleep, we're likely to see positive benefits to mood, fatigue, concentration."

The chronic lack of sleep affects a patient's overall health as well as their pain, Rose adds. "They feel lousy, exhausted, and their immune system can be damaged."

Steven Berney, MD, chief of rheumatology at Temple University Health System in Philadelphia, agrees. "In fibromyalgia, all treatments are geared toward helping people sleep better," he tells WebMD. "If we can improve their sleep, patients will get better."

Living With Fibromyalgia and Chronic Fatigue

Sleeping pills aren't the answer, says Rose. "They are intended for no more than six weeks. It's not just that your body gets habituated to them, so you need higher levels of the sleep drug as time goes on. The problem is that they just don't work well with these patients."

Indeed, living with fibromyalgia is more than just popping a pill, says Martin Grabois, MD, chairman of physical medicine and rehabilitation at Baylor College of Medicine in Houston. "A good deal is self-treatment. Patients have to be active, not passive."

First step: Patients may need to be checked for symptoms of snoring and sleep-related breathing problems. Sleep apnea, respiratory problems, allergies, and big tonsils or tongue are among the possibilities, Rose tells WebMD. "A lot of those things can be corrected." 

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What you can do. Lifestyle changes -- cutting back on caffeine, alcohol, and smoking -- may be necessary to improve sleep. Sleep habits may need to change. To make your bedroom more sleep-friendly, it's important to:

• Limit noise, light, and other stimuli (like pets).
• Keep the room temperature and bedding comfortable.
• Do something relaxing before bed, like listening to music or reading.
• Turn the alarm clock so it's not facing you.

If you're having trouble getting to sleep, get up and do something restful in another room, Rose advises. "Don't lie in bed, worrying and stressing. Get up, go to the other room. When you're calmer, relaxed, feel tired, go back to bed."

Don't nap. Make sure your sleep time follows a regular schedule, she adds. "A lot of patients have circadian rhythm problems. Napping can throw you off. Any sleep during the daytime will be taken from your sleep at night."

Reduce stress. Anything that reduces stress -- yoga, Pilates, meditation -- will help you sleep better, says Rose. It will also help normalize heart rate and blood pressure, so you feel better. Psychological therapy, relaxation exercises, visualization, meditation, and biofeedback can help ease anxiety, tension, and stress.

Start stretching. Several times a day, it's important to give tight muscles a good stretch. Before you get out of bed in the morning, start with stretching: move your head and neck, and you’re your shoulders up and down. Make stretching a ritual. A warm bath can make the stretch more comfortable.

Exercise. Getting regular exercise is also important, Rose says. "Any time you have pain, insomnia, and fatigue, I always say exercise. Exercise has a profound effect on mood, weight, and fatigue. Water exercise is easier on joints, so it's a lot more tolerable for fibromyalgia patients."

Although physical therapy and exercise may be difficult, the short-term pain is a trade-off, she explains. "Even though you feel a lot of pain and discomfort, pushing yourself is important. Exercise helps reduce stress, and that helps sleep and reduces fatigue."

Pace yourself. Moderation is important if you have fibromyalgia, says Grabois. "When people feel good, then they tend to do too much -- then pay the price later. Others give up on exercise altogether, because they don't sleep well, feel fatigued, and exercise makes the fatigue worse."

Start with very low intensity exercise and build up very slowly, he advises. "I'm not saying run around the block three times. I'm saying walk around the block one time -- and do it on a regular basis, seven days a week."

With daily activities, it's good to set up a scheduled routine. Be careful about overdoing it, so you don't deplete your extra energy. Learning moderation is a skill that can help you get things done despite discomfort and fatigue.

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Try medications. Antidepressants and other medications can help greatly in pain control, says Rose. "If your body is worn down, and you're in pain, it's something to consider. I tell people, you can always quit taking it. We can see if it helps."

Consider complementary therapies. Alternative therapies like massage and acupuncture have helped some people living with fibromyalgia. Be sure to talk to your doctor before trying natural or complementary therapies, Rose advises.

Volunteer work, hobbies, and a social support network also help make it easier living with fibromyalgia. So does a sense of humor.

"Anything you do to make your quality of life better -- to give you more happiness -- you can't lose," Rose tells WebMD. "Do what brings you happiness, and chances are it will help you refocus, get your focus away from the pain."