Treating CFS & Fibromyalgia: How Family and Friends Can Help
By Bruce Campbell
There is so far no cure for either Chronic Fatigue Syndrome (CFS) or fibromyalgia, but there are many ways to alleviate the symptoms of the two conditions. Family and friends can help, by supporting patients in their efforts to feel better.
Medications and Lifestyle Change
One approach to controlling symptoms is to treat them using medications. Since no medication is consistently effective for either condition, a common approach to medical treatments is to find a doctor or set of doctors willing to experiment to determine what works for the individual patient. One way family and friends can help someone with CFS or FM is assisting them in their interactions with the medical system, which can include finding doctors, accompanying patients to medical appointments, and fighting with insurance companies.
In addition to medications, most patients treat their symptoms by making changes in how they lead their lives. Family and friends have an important role in this realm as well. A person's symptom level is affected by how they live with CFS or FM. Symptoms tend to be higher if a person is more active than her body will allow or if she is under stress or if she sleeps poorly. Conversely, some symptom control is usually possible if the person who is ill lives within their limits, manages stress and gets adequate rest.
Family and friends can intensify or help to alleviate the symptoms of their loved one by the way they act around her. This article discusses this second area: how family and friends can support the person who is ill in her efforts to control symptoms by making changes in her daily life. We will focus on three areas: activity level, sleep and cognitive problems.
Limits & Pacing
The severity of Chronic Fatigue Syndrome and fibromyalgia vary greatly, but usually patients function somewhere between about 15% and 50% of normal. Perhaps the single most important lifestyle change for controlling symptoms is to adjust activity level to fit the limits imposed by illness. 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. We call this pacing.
For a given individual, pacing may involve some or all of the following strategies: reducing overall activity level, integrating rests into the daily routine, shifting between light and heavy activities, timing activity for the best hours of the day, and having a consistent level of activity from day to day. (For more on pacing, see the Related Articles listed at the end of this article.)
Family and friends have an important role to play in helping the patient to adapt to limitations. The most significant help is to honor the patient's limits, accepting that the patient can do less than before and that trying to do more than the body allows intensifies symptoms. Honoring the patient's limits often means that others have to take on new responsibilities and accept that the patient doesn't have as much energy for relationships as in the past.
The process of accepting limits and learning to live a different kind of life usually takes several years, and is based on an acknowledgment of the need to live a different kind of life. Acceptance does not mean resignation, but rather a commitment to live the best life possible under the circumstances.
Poor sleep is one of the most common and troublesome issues in both CFS and fibromyalgia. Treatment of sleep problems usually 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 spouse snoring. Some couples solve noise problems by sleeping in separate rooms. This strategy also allows the patients greater control over other elements in the sleep environment.
Other factors that affect sleep include overactivity, stress and worry. Too much activity can create a sense of restlessness, sometimes called the "tired but wired" feeling. The antidotes are keeping activity within the limits imposed by the illness and having a quiet period to wind down before going to bed. Practices that reduce stress and worry, such as having an orderly home and living by a schedule, also aid good sleep.
Fighting the Fog
Most CFS and fibromyalgia patients 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. There are many strategies patients can use to control cognitive problems. (See the article Lifting the Fog.) The discussion here focuses on how family and friends can help.
Most CFS and fibromyalgia patients 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. Some families use headphones for the sound portion of television broadcasts.
Another way to limit sensory overload is to have an orderly physical environment. 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 patients have better and worse periods during the day. The amount of both physical and mental effort can vary greatly depending on when things are done. A patient may be able to get twice as much done if they schedule activity for good hours of the day. Similarly, discussions are likely to be more productive if held during a time when the patient is mentally sharpest.
Because symptom levels of CFS and fibromyalgia are affected by how people live with the conditions, the actions of those around the person who is ill will have a major effect on the patient's quality of life.