Managing Chronic Fatigue Syndrome and Fibromyalgia
Being ill reduces activity level and produces deconditioning, fatigue, pain, stiffness, anxiety and depression. One way to start a spiral in the other direction is with exercise. Exercise counteracts all these factors. It produces a higher level of fitness; it reduces fatigue, pain and stiffness; and it improves mood.
Exercise is usually an important part of a treatment plan for fibromyalgia and may be helpful for CFS patients as well. Before starting an exercise program, check with your doctor. He or she may refer you to other professionals who specialize in exercise, such as physical or occupational therapists.
A comprehensive fitness program includes three types of exercise:
Flexibility: Stretching reduces pain and stiffness, and keeps joints and muscles flexible. Stretching is often a good starting place for an exercise routine and also can be used as a warm-up for other forms of exercise. Other types of flexibility exercises include yoga and Tai Chi.
Strength: These exercises increase muscle strength, making it easier for you to do your daily activities. Strength exercises are often done using weights, but you can begin with simple movements like standing up from a chair or moving your arms.
Endurance: Often called "aerobic exercise," endurance work strengthens your heart and lungs. This form of exercise helps lessen fatigue and pain by giving you more stamina; it also improves sleep and mood. Examples include walking, biking and water exercise.
Exercise: CFS vs. Fibromyalgia
The type and amount of exercise you do will differ depending on the severity of your illness and on whether you have CFS or fibromyalgia.
For most CFS patients, exercise can easily trigger an intensification of symptoms, so patients should focus on avoiding post-exertional fatigue (excessive tiredness after activity). All physical activity should be considered exercise. Even if you don't have a formal exercise program, you are exercising already (and may be overdoing it!) if you do things like clean house, wash laundry, cook, shop or garden. For more on how to identify what is too much activity, see box. Because many CFS patients have a tight limit on how much activity they can do without increasing symptoms, doing exercise might require that some other activities be dropped or rescheduled.
Exercise programs for CFS often focus on flexibility and strength; endurance exercise may be helpful, but only for higher-functioning patients. Pacing should be applied in exercise, so that a period of activity is alternated with rest. For some people, the time of exertion might be only a minute, followed by up to several minutes of rest.
If the biggest danger for CFS patients is post-exertional malaise, the danger for fibromyalgia patients is immobility. If you have fibromyalgia, fellow FM patient and author Stacie Bigelow suggests you think about a cement truck. The contents of the truck remain soft as long as they are continually moving. If the drum stops rotating, however, the cement hardens into concrete. She and other authorities on exercise for FM patients recommend two to five minutes of movement after 20 to 30 minutes of being sedentary. You can experiment to find what combination works for you.
Ms. Bigelow suggests that an exercise program for fibromyalgia begin with increasing daily activity, things like showering, making the bed, preparing meals, shopping, and taking care of children. Attention to daily activity should also include sensitivity to posture and movement, and to the pacing of activity. As noted in the chapter on treating pain, one way to control pain is through proper posture and body mechanics. Also, alternating periods of activity with rest breaks reduces the likelihood of exacerbating pain.
A formal exercise program for fibromyalgia can begin with stretching. Like being active, stretching increases flexibility, thereby reducing pain and stiffness. A stretching routine can be done most days of the week. (For sample flexibility exercises, see Chapter 4 in Bigelow's book Fibromyalgia: Simple Relief through Movement and Chapter 6 in The Arthritis Foundation's Guide to Good Living with Fibromyalgia.) A fibromyalgia exercise program normally also includes an endurance component, such as walking or pool exercise. You may use one or several types of exercise. Often, people with fibromyalgia can do endurance work most days of the week. Lastly, an exercise routine for FM should include strength training two or three times a week. (For sample strengthening exercises, see The Arthritis Foundation's Guide to Good Living with Fibromyalgia and Chapter 12 in The Arthritis Helpbook.)
Many fibromyalgia patients participate in water exercise classes. One example is the Arthritis Foundation's Aquatics Program, offered in many locations in the United States. For information, see the Foundation's website: www.arthritis.org/.
Heart Rate & Post-Exertional Malaise
If you have CFS, you are probably familiar with post-exertional malaise, the severe fatigue that results from doing too much. One trigger for malaise can be your heart rate. If it goes over a threshold, malaise will result. The threshold is often around 60% of maximum heart rate. (Maximum heart rate is 220 minus your age. For a person who is 50 years old, 60% of maximum heart rate is 102 beats per minute, calculated as: [220 - 50] x .60.)
Some people can exceed their threshold easily with everyday activity. For example, one person in our program found that just going up a flight of stairs pushed her heart rate beyond her threshold. Another person says that lifting her daughter used to push her over the edge. The solution for the first person was to stop halfway up the stairs for a brief rest. The solution for the second was to sit down and have the child climb into her lap. A third person, who found that many activities put her over her limit, learned to be active with less exertion. She sits down for many activities in the kitchen, empties the dishwasher in stages, and uses a grabber to pick up things without having to bend over.
Staying within your heart rate threshold can lead to an expansion of the energy envelope. One person in our program reported, "I've made a lot of progress in the past year, mostly thanks to heart rate monitoring, which trained me to reduce my activity to a level my body can handle. By forcing myself to stay within my limits, I have slowly achieved an increase in what I am able to do."
If you think you might benefit from monitoring your heart rate, check with your doctor. For more on this subject, see the article Pacing by Numbers: Using Your Heart Rate To Stay Inside the Energy Envelope.
In creating your exercise program, consider the following general guidelines.
1. Individualize Your Program. Exercise programs for CFS and fibromyalgia should be tailored to the unique situation of each person. The type, duration and intensity of exercise will depend on the severity of your illness and also will differ depending on whether you have CFS or FM. Your tolerance for exercise may vary depending on time of day, so it's important to understand how your limits are affected by when you work out.
2. Set Realistic Goals. Exercise has a different purpose for CFS and FM patients than for healthy people. Healthy people may train for an event like a marathon or work on sculpting their bodies. They can set goals and push themselves. That approach is likely to make symptoms worse for people with CFS and fibromyalgia. An appropriate exercise goal for CFS would be to improve fitness enough to make daily activities easier. For fibromyalgia, it is realistic to use exercise to reduce stiffness and pain.
3. Start Low & Go Slow. Begin by finding a safe level of exercise, one that does not intensify your symptoms. The goal is to have a sustainable level of effort that you can do several times a week. To improve your flexibility, you might try stretching, yoga or Tai Chi. For strength training, use light weights or isometric and isotonic exercises. (Isometric exercise involves tightening muscles without moving your joints. Isotonic exercise involves joint movement.) In the endurance category, many people with CFS and FM use walking and water exercise programs. For some people, starting low may mean as little as one or two minutes of exercise per session.
It is usually advisable to keep the same duration goal for a considerable period of time and to increase the duration very gradually, as tolerated by the body. You may break down your total exercise times into a number of shorter sessions, aiming eventually for a total of something like a half an hour a day. It may take six months to a year to build up to a 30-minute routine; for some patients, 30 minutes is an unrealistic goal.
4. Monitor Yourself. The intensity of exercise for most patients should be in the 4 to 5 range, where 1 is resting and 10 is the most effort you can imagine. A standard often used to determine whether you have an appropriate level of aerobic exercise is the talk test: you should be able to carry on a conversation while exercising. If you have pain that lasts several hours after you finish, experiment with the intensity and length of your program. You may be able to reduce pain by experimenting with heat or massage before exercise and cold after. Heat in the form of heat pads or warm water (a shower or bath) increases blood flow; cold in the form of ice packs or bags of frozen vegetables reduces inflammation.
To evaluate your program and troubleshoot problems, consider keeping a record of your exercise and the consequences. You might record the time and duration of exercise, its intensity and your symptom level before, during, after and the next day. You can note symptoms using a ten point scale or letters like L, M and H to note low, medium and high. A diary can help you see the effects of exercise, some of which may be delayed for hours or even a day.
Sticking with It: Exercise for the Long Haul
The benefits of exercise are greatest for those who exercise regularly. Here are some ideas for how to persevere with an exercise program.
1. Do exercise you enjoy. Your chances of sticking with an exercise program are much greater if you like what you are doing, so find a form of exercise you enjoy. Make your time more pleasant by listening to music or distracting yourself in some other way.
2. Find the right setting. If you have trouble motivating yourself to exercise alone, exercise with a friend or join a class. Making a commitment and socializing while you exercise are two good ways to increase the odds you will continue.
3. Keep records. Consider motivating yourself by keeping records. Setting goals and measuring progress often helps people stick with their program. Also, keeping an exercise diary is a way to hold yourself accountable.