Nutrition and Chemical Sensitivity

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By Bruce Campbell

Food is fuel for the body, but people with ME/CFS and fibromyalgia face several challenges to getting good nutrition. In addition, some of them are sensitive to various substances. This article deals with both topics.

First, most people with ME/CFS and FM experience an intolerance of alcohol and many are sensitive to other substances, including: 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 people with ME/CFS and fibromyalgia experience food sensitivities or food allergies or have difficulty absorbing nutrients. Negative reactions include gastrointestinal symptoms such as heartburn, gas, nausea, diarrhea 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 ME/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 ME/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 "ME/CFS diet" or "fibromyalgia diet." Here are some general guidelines.

Experiment: About two thirds of people with ME/CFS and FM 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.
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.
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.
Avoid some foods and substances: Almost all ME/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.
Consider other causes of food problems: Many ME/CFS and FM patients also suffer from irritable bowel syndrome (IBS) or yeast infections like candida. Consider whether some or all of your food sensitivities might be caused by other illnesses.

Chemical Sensitivities

ME/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 ME/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 Erica Verrillo and Lauren Gellman's book Chronic Fatigue Syndrome: A Treatment Guide and the discussion on designing a healthy environment in Fred Friedberg's book Coping with Chronic Fatigue Syndrome.