Recent chapters have described various strategies for managing symptoms. This chapter discusses three more approaches: exercise, changes in diet and avoiding substances that trigger allergic reactions.

Exercise

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; reduces fatigue, pain and stiffness; and improves mood.

Exercise is usually an important part of a treatment plan for fibromyalgia and may be helpful for CFS patients as well, but there are some patients for whom exercise is not likely to be helpful and may even produce a setback. It may be inappropriate for people whose symptoms are particularly severe and is inadvisable when symptoms flare up dramatically. Before starting an exercise program, check with your doctor. He, in turn, 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 if you do things like clean house, wash laundry, cook, shop or garden. For some people, a trip to the grocery store is a day’s exercise. 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. 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 treatment options, 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 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 and normally 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 www.arthritis.org, the Foundation’s web-site.

Exercise Guidelines
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 patient. 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. As mentioned earlier in the book, most patients have better and worse times of the day. Your ability to exercise can vary dramatically depending on 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, 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, try a gentle aerobic form of exercise, like walking or exercising in a pool. 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.

Nutrition 

Food is fuel for the body, but CFS and fibromyalgia patients face several challenges to getting good nutrition.

First, most patients experience an intolerance of alcohol and many are sensitive to caffeine and other stimulants, sweeteners (such as sugar, corn syrup, fructose, aspartame and saccharin), food additives (such as MSG, preservatives, artificial colors and artificial flavors) and tobacco. Cutting down or eliminating these substances may reduce symptoms and mood swings, and also improve sleep.

Second, because of energy limitations, lack of appetite or severity of symptoms, some patients find it difficult to spend enough time to prepare good meals. Some possible solutions include:

Getting help with food preparation: Ask family members to share or take over responsibility for meal preparation or share food preparation with friends.

Preparing meals ahead of time: When feeling better, cook casseroles that will last for several days or freeze meals.

Using frozen foods: There are now many nutritious foods available in frozen form.

Buying food online or by phone: Replace visits to the grocery store with ordering from home and having groceries delivered.

Being kind to your body in the kitchen: Prepare meals in ways that respect your body’s needs, such as taking rest breaks, using a stool, limiting repetitive motions, using good posture and avoiding dishes that take a long time to prepare.

Third, about one third of CFS and fibromyalgia patients experience food sensitivities or food allergies or have difficulty absorbing nutrients. Negative reactions include gastrointestinal symptoms (such as heartburn, gas, nausea, diarrhea and constipation), as well as other symptoms such as headaches, muscle pain, changes in pulse and fatigue.

Unfortunately, there is no common set of foods to which susceptible CFS and FM patients are sensitive. One person may respond badly to dairy, while another must avoid wheat. Some common sources of food allergy include dairy products, eggs, soy, wheat and corn. Other sources include tomatoes, potatoes and other members of the nightshade family; fruits; spicy foods; gas-producing vegetables, such as onions, cabbage and broccoli; raw foods; and nuts.

There are two major treatments for food sensitivities and allergies: avoidance and the rotation diet. The first step in both treatments is the same: identifying foods that trigger allergic reactions. To do this, list foods you think might cause problems, eliminate them from your diet, and then reintroduce them one by one. Because reactions can take one to several days to develop, you will need to record what foods you eat and what symptoms you experience for a several-day period.

If foods produce strong reactions, such as diarrhea, nausea, headaches or hives, you will probably have to eliminate them from your diet entirely. Often, the elimination of just a few foods can improve symptoms dramatically. Alternatively, you may find you can tolerate a food if you eat it only occasionally. This is usually called the rotation diet. After eating a food, you wait a period of four to seven days before eating it again.

As with so much concerning CFS and fibromyalgia, reactions to food are highly individual, so approaches to food will have to be individualized. There is no off-the-shelf, standard “CFS diet” or “fibromyalgia diet.” Here are some general guidelines.

1. Experiment: About two thirds of CFS and FM patients don’t have food allergies and can focus on getting a balanced diet and avoiding substances such as alcohol and tobacco. The remainder will have to work to find what substances cause their symptoms. Because reactions to food vary from person to person, people in this third have to experiment to determine the foods that create reactions and then experiment to determine whether to reduce or eliminate them from the diet.

2. Listen to your body: If a food or substance makes you feel worse, don’t eat it. Sensitivities vary tremendously; it’s possible that you might not tolerate “good foods” such as some fruits and vegetables.

3. Eat Sensibly: To the extent allowed by your sensitivities, eat a balanced diet. There is more danger in trying fad diets than in eating a standard diet generally recommended for all adults, one that includes a variety of foods from different food groups, focusing on fruits, vegetables, whole grains, and moderate in fat.

4. Avoid some foods and substances: Almost all CFS and FM patients are intolerant of alcohol and stimulants like the caffeine found in coffee and tea. Many are sensitive to sweeteners and food additives. Eliminating or reducing these products makes sense for most patients.

5. Consider other causes of food problems: Many CFS and FM patients also suffer from irritable bowel syndrome (IBS); yeast infections, like candida; celiac disease, which causes a strong allergic reaction to wheat and other grains; and lactose intolerance, which is the inability to digest the sugar in milk. Consider whether some or all of your food sensitivities might be caused by these other illnesses.

Chemical Sensitivities

CFS and FM patients also often experience allergic reactions to other substances besides food. The range of reactions varies greatly among patients, from mild annoyance to serious threat. Those on the far end of the spectrum may be housebound.

Sensitivities to mold, dust mites and grasses are common. Patients also react to perfumes, scented products, cigarette smoke, household chemicals, car exhaust and diesel fumes, glues, inks and dyes. Symptoms include headaches, dizziness, faintness and nausea. (Because many patients are chemically sensitive, most CFS and FM support groups ask people to come “fragrance free.”)

The most useful coping strategy is avoidance, which includes eliminating offending substances from the home and limiting exposure to them while outside the house. If you think you might be chemically sensitive, check the products in your kitchen, bathroom and laundry, such as cleaners, soaps, detergents, pesticides and personal care products, such as deodorants, shampoos, toothpaste, lotions and perfumes. For more, see Chapters 8 and 9 in Verrillo and Gellman’s book and the discussion on designing a healthy environment in Friedberg’s book.

References

Arthritis Foundation. The Arthritis Foundation’s Guide to Good Living with Fibromyalgia. Atlanta: Arthritis Foundation, 2001.

Bigelow, Stacie. Fibromyalgia: Simple Relief through Movement. New York: Wiley, 2000.

Friedberg, Fred. Coping with Chronic Fatigue Syndrome. Oakland, New Harbinger, 1995.

Lorig, Kate and James Fries. The Arthritis Helpbook. Cambridge, Mass: Perseus Books, 2000.

Verrillo, Erica and Lauren Gellman. Chronic Fatigue Syndrome: A Treatment Guide. New York, St. Martin’s, 1997