Lack of Knowledge

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Note: Pacing is often ranked by patients as the most effective treatment for CFS and FM, but it can be hard to do. This series explores six factors that make pacing difficult and strategies for overcoming them.

By Bruce Campbell

The first obstacle we'll look at is lack of knowledge: not understanding what's involved in pacing. Pacing means knowing your limits and living within them. If you can do that, the benefits you will experience include:

• Lower symptoms
• Less suffering
• More stable and predictable life
• Sense of control
• More accomplished
• Possible improvement in functional level

Failure to pace, on the other hand, produces the intensification of symptoms called post-exertional malaise (PEM). The key fact about PEM is that it is out of proportion to the ‘mistake'. It is not uncommon for PEM to last days, weeks or even months. Keeping the price of overexertion in mind is one motivator for pacing.
 

Understanding Limits

Pacing means living within your limits. You can get a general idea of your overall limits or Energy Envelope by locating your current level of functioning on the CFS/FM Rating Scale. Place yourself on the scale by answering the question "What is the highest level of functioning you can sustain without intensifying your symptoms?"

You can get a more detailed understanding by keeping records to discover your limits in six different areas:

Physical activity: This refers to activities such as bathing and dressing, cooking, cleaning, doing laundry, shopping, driving, standing, exercise and work (for those who are able). One way to get an idea of your limit for physical activity is by counting your steps using a pedometer. For instructions, see the article Pedometers: A Tool for Pacing.

Mental activity: These are activities that require concentration, such as reading and working on the computer. You can determine limits in this area by experimentation. For example, try answering emails for varying lengths of time and note the effects on your symptoms. Perhaps 10 minutes per session is OK, but 20 minutes produces fatigue.

Social activities: Third is the time you spend interacting with other people, in person or on the phone. You can experiment to find time limits in this area as well. For in-person meetings, you can ask yourself whether the setting or number of people make a difference. A person in our program who has four grown children allows only one child and her kids to visit at a time.

Sensory experience: People with CFS and FM are often highly sensitive to sensory experience, which includes sensitivity to food and other substances (including medications!), vulnerability to noise and light, and sensitivity to weather and the seasons.

Emotions: Experiencing emotions takes energy. For example, if you feel frustrated about your limits, that frustration will use some of your energy. Likewise, you can spend energy in worry. If you can find ways to reduce the drain caused by some emotions, you can free energy for productive use.

Stress: CFS and FM add new stresses while simultaneously making people more vulnerable to stress (we call it "resetting the stress thermostat"). Anything you can do to manage stress will free energy for productive use. (For some ideas, see the articles in the Stress Management section.)
 

Key Pacing Strategies

Once you know your limits, your next challenge is to adapt to them. This is a gradual process, usually taking a period of months to years and involving the use of multiple strategies.

The master strategy for most people is to reduce their overall activity level so it fits within their body's limits. You can reduce your activity level using a combination of delegating, simplifying and eliminating. Delegating means finding someone else to do a task that you used to do. For example, have other family members do the grocery shopping or hire a cleaning service. 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. Also, you will probably have to eliminate some activities.

There are many other pacing strategies as well. We recommend two as particularly important: scheduled rests and setting limits for individual activities. We suggest you start with them, but feel free to begin wherever you like.
 

Scheduled Rests

Taking planned rest breaks gives you a way to control your symptoms, bring greater predictability and will usually reduce your total rest time because you'll spend less time recovering from PEM. People with light to moderate CFS/FM often do well with one or two rests of 15 minutes to half an hour each. Those with severe CFS or FM may benefit from taking multiple brief rests a day, for example a 10 to 15 minute rest every hour or two.

Scheduled rest is a popular energy management strategy because it is straightforward and brings immediate benefits to most people who use it. If you want to try scheduled rest, we recommend you start with lying down in a quiet place with your eyes closed. If you find yourself distracted by your thoughts, try using a relaxation technique or listening to music or to a relaxation CD. For more, see the article Nurture Yourself with Pre-Emptive Rest.
 

Limits for Individual Activities

Another way to control symptoms is to set limits on particular activities, so that you stop before your symptoms intensify. For example, you may set limits on how long you stand, how long or how far you drive, how long you spend on the computer or the phone or the time you spend socializing. You can find your limits by experimenting and then enforce your limits by using a timer and notes to yourself.

A good starting point for people with moderate to severe CFS/FM is to set a limit on trips outside the house. A typical limit is two or three outings a week. For people who are lower, the limit might be one trip per week or less (with extra rest before and after).
 

More Pacing Strategies

Even if scheduled rests and activity limits are effective, you will probably use additional pacing strategies. Here are several more to consider.

Activity Shifting: Another strategy for getting more done without intensifying symptoms is to shift among physical, mental and social activities. For example, if you find yourself tired or confused after working on the computer for a while, you might stop and call a friend or do something physical like cooking.

Another way to use task switching is to divide your activities into different categories of difficulty (light, moderate and heavy), switch among different types and schedule only a few of the most taxing activities each day.

The Rule of Substitution (Pigs at a Trough): If your limits allow you to leave the house three times a week and something new arises, find a way to postpone one of the usual outings in order to honor your limit. This approach is sometimes called "pigs at a trough." There is limited space beside a trough. The only way a new pig can get in is to squeeze another out.

Time of Day: Most people with CFS and FM find they have better and worse times of the day. For some, mornings are good, while others perk up later in the day. It's likely you can get more done, without intensifying your symptoms, by changing when you do things, so that you use your best hours for the most important or most
demanding tasks.

Devices: You may be able to get more done, avoid symptoms or both by using devices to help you. As mentioned above, you can use a pedometer (step counter) to find and then limit your physical activity. Similarly, you can use a heart rate monitor to keep your heart rate within safe limits. (See the article Pacing By Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope.)

If you tire quickly or feel faint while standing, consider sitting down whenever possible, for example to prepare meals and while showering (use a plastic stool or chair for the latter).

If you can't stand for long or you are sensitive to sensory input, you may find shopping easier if you use a scooter or motorized cart. Many large stores have such devices, which they make available for free. One person in our program who used to rest for two hours after grocery shopping found that she didn't need to rest if she used a scooter.

Daily Schedule: The goal of pacing is to move gradually toward consistency, having similar amounts of activity and rest each day. A good place to start is by planning a day at a time. In the morning or the night before, list possible activities for the day. Then evaluate your list, asking whether you will be able to do everything on it without intensifying your symptoms. If not, identify items that can be postponed, delegated or eliminated.