Step 5: Gain Control through Lifestyle Adjustments
By Bruce Campbell
Your quality of life with CFS or FM may depend as much or more upon your efforts and willingness to adapt than on anything a doctor does for you. This is because your actions and the way you live your life have a marked effect on your symptoms. If you push against your limits, your symptoms are likely to remain intense or even increase. Repeated cycles of push and crash are often accompanied by frustration and a sense of helplessness.
There is a way off the roller coaster. If you can understand your condition and gradually adjust it, you are likely to gain some control over your symptoms. This is why CFS/FM physician Dr. Charles Lapp has said, "There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM." Step 5 is learning to control your condition through making changes in your daily habits and routines.
The Energy Envelope
I suggest you think of your situation using the idea of the Energy Envelope or the amount of energy available to you. For most CFS and FM patients, energy has been reduced by half to three-quarters. To get a quick idea of your envelope, rate yourself using the CFS/FM Rating Scale. Your self-assessment will give you an idea of how many hours a day you can be active. If you expend more energy than you have, you will intensify your symptoms. We call this living outside the energy envelope. If, however, you can live within your envelope, you can gain some control over your illness and may be able to expand your envelope.
While it's helpful to have a general understanding of your envelope, you may gain further control over your illness by defining your limits in different parts of your life. For example, you might find that you are able to drive half as much as before becoming ill, but can stand for only a few minutes. Or you might be able to work at the computer for an hour, but able to walk only 15 minutes. To develop a detailed understanding, see the articles in the Pacing archive.
Setting Priorities
Having an envelope means that you aren't able to do all you used to do or everything you would like. The limits imposed by illness mean you have to make choices, to set priorities. One way to establish priorities is through a three-step process. First, list the activities you do in a typical week, estimating how much time each one takes. Then, compare the total time involved with the limit you established using the Rating Scale. If your activities take more time than your limits allow, you will have to make some adjustments.
Try thinking in terms of delegating, simplifying and eliminating. Delegating means finding someone else to do a task that you used to do. For example, family members might share in meal preparation or grocery shopping, or a cleaning service could take over housecleaning. Simplifying means continuing to do something, but in a less elaborate or complete way. For example, you might clean house less often or cook less complicated meals. Finally, you may decide to eliminate some activities or relationships.
Changing How & When You're Active
In addition to controlling symptoms through limiting your overall activity level, you can affect your symptoms by adjusting how you are active. For example, you might use short activity periods or spread your activity out throughout the day or over a week. Two short periods of work with a break in between can produce more and leave you feeling less symptomatic than the same amount of time expended in one block.
Another strategy for getting more done is activity shifting: moving from one type of activity to another. You might switch between physical, mental and social activities. If you find yourself tired after working on the computer, you might stop and call a friend, or go to the kitchen and prepare some food.
Other patients divide their activities into different categories of difficulty. They schedule only a certain number of the most taxing activities a day and make sure to switch frequently among different types.
Finally, you may be able to increase the amount you get done, without spending more time or intensifying your symptoms, by changing when you do things, taking on the most challenging tasks during your best times of the day.
Balancing Activity and Rest
Integrating scheduled rest into your life is another way to control symptoms and to bring greater predictability. We use the term "rest" in a special way in our program. For us, rest means lying down with your eyes closed in a quiet place. We do not consider such things as watching TV or reading to be rest. We view them as activities. They may require less energy than housework, errands, or paid work, but they are activities nonetheless.
I suggest you consider adopting a practice we call pre-emptive rest or lying down according to a planned schedule. Scheduled rests have been one of the most frequently used strategies among people who have taken our course. Although the length of rest varies from person to person, for most people pre-emptive rest has meant taking one or two rest breaks a day of 15 minutes to half an hour each.
Exercise
Exercise is usually a part of self-management for people with fibromyalgia and can be helpful for CFS patients as well. Exercise counteracts many of the symptoms and problems of the two illnesses, including deconditioning, fatigue, pain, stiffness, anxiety and depression.
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 already exercising if you clean house, wash laundry, cook, shop or garden. Exercise programs for CFS often focus on flexibility and strength. 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.
Exercise for fibromyalgia focuses on counteracting stiffness and reducing pain. Many exercise authorities recommend that fibromyalgia patients do two to five minutes of movement after 20 to 30 minutes of being sedentary. Exercise programs for fibromyalgia can 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. A formal exercise program for FM can begin with stretching. Like being active, stretching increases flexibility, thereby reducing pain and stiffness. A fibromyalgia exercise program normally also includes an endurance component, such as walking or pool exercise.
Diet
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, patients sometimes find it difficult to spend enough time to prepare good meals. Some possible solutions include: getting help with food preparation, preparing meals ahead of time, using frozen foods, and buying food online or by phone and having it delivered.
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 constipation, as well as other symptoms such as headaches, muscle pain, changes in pulse and fatigue. Some common sources of food allergy include dairy products, eggs, soy, wheat, and corn. There are two major treatments for food sensitivities: avoidance and the rotation diet. In the former, you eliminate a food from your diet; in the second, you eat something only occasionally, typically once or twice a week.
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