Managing Chronic Fatigue Syndrome and Fibromyalgia
23. How Family and Friends Can Help
Family members and friends can help people with CFS or FM in many ways. Some help is practical, such as taking on tasks the person with CFS or FM is no longer able to do or providing transportation to medical visits. Some help is emotional, offering a listening ear or some reassurance.
But perhaps the biggest aid is supporting the person with CFS or FM in her efforts to adjust her life to the limits imposed by long-term illness. The severity of symptoms and sometimes even the course of a person's illness are affected by how she lives her day to day life. If you are a family member or friend of someone with CFS or FM, the way you interact with that person will have a significant effect on her, helping her gain control over her condition or making that goal more difficult. Here's how you can help in five important areas.
Activity Limits and Pacing
Probably the single most important lifestyle change for controlling symptoms is to adjust activity level to fit the limits imposed by illness.
This approach is often called pacing. In contrast to fighting the body with repeated cycles of push and crash, the person who adapts to limits seeks to understand the body's new requirements and to live within them. Pacing, above all, means reducing one's overall activity level. The reduction varies depending on the severity of symptoms, but is usually between 50% and 80%. The average person in our program rates herself at 30 or 35 on the CFS & FM Rating Scale , which allows for about three hours of activity a day.
Family and friends can help the person with CFS or FM to adapt by accepting that she can do less than before and by acknowledging that she will need to spend more time in rest and do things in new ways (such as alternating activity and rest).
Poor sleep is one of the most common and troublesome issues in both CFS and fibromyalgia. Treatment of sleep problems often includes prescription medications, but lifestyle changes can also be useful. Sleep can be improved by having an environment conducive to sleep and by having good sleep habits, such as a regular time to go to bed each night.
A comfortable sleep environment includes a good mattress and control of light, noise and temperature. (Noise includes snoring.) Some couples solve noise problems by sleeping in separate rooms. This strategy also allows the person who is ill to have greater control over other elements in the sleep environment.
Fighting the Fog
Most people with CFS and fibromyalgia experience cognitive difficulties, often called "brain fog" or "fibro fog." These problems include confusion, difficulty concentrating, fumbling for words and lapses in short-term memory. Family members can help the person with CFS/FM reduce the amount and the effects of cognitive problems by supporting their loved one in her efforts to control fog.
One common technique for combatting fog is the use of lists and other reminders. People with CFS and FM often post notes to themselves in places like the refrigerator, bathroom mirror or the inside of the front door.
Most people with CFS and fibromyalgia feel confused by sensory input coming from several sources at one time. They are likely to think more clearly if noise and light are at levels they can tolerate, and if sensory data is limited to one source at a time. Another way to limit sensory overload is to have an orderly physical environment, so reducing clutter is helpful. A related strategy for controlling the effects of brain fog is to live a predictable life using routines. For example, always putting keys in the same place and having meals at the same time every day.
A final strategy for reducing the effects of brain fog is to be sensitive to time of day. Most people with CFS and FM have better and worse periods during the day and may be able to get much more done if they schedule activity for good hours of the day.
Sensitivity to Stress
Stress is a challenge for everyone, but it is especially difficult for people with CFS and FM. The two conditions add new stressors and also make people more vulnerable to stress. CFS and FM reset people's "stress thermostat," so that the effects of a given level of stress are greater than they would be for a healthy person. The combination of additional stressors and increased vulnerability creates a double challenge. Stress is multiplied at the same time that stress takes a greater toll.
One of the best stress management strategies is preventive: minimizing the body's stress response by avoiding stressful situations. This can include a person's avoiding foods and other substances to which they are allergic, minimizing situations that create sensory overload (for example, crowds and noisy places) and limiting contact with anxious or negative people. Another stress avoidance technique is routine: doing things in familiar ways and living life according to a schedule.
Special events, such as vacations, holiday celebrations or (for some people) having people over for dinner, require special measures. As non-routine events, they require more energy than everyday life and can easily lead to a relapse. Family members and friends can help by supporting the person with CFS or FM in her use of strategies that reduce the cost of a special event.
The most effective strategy is to take more rest than usual, before, during and after a special event, storing up energy by taking extra rest before the event, limiting symptoms by taking extra rest during and taking whatever extra rest is needed afterwards.
Patients often minimize the cost of a special event by changing their role or level of involvement. They might stop cooking the meal for a holiday celebration and instead ask family members to bring one dish each. Or they might go to event, but stay for less time than when they were healthy or change their level of involvement based on symptoms. On a trip, for example, they might opt out of some activities in order to take additional rest.