How Families Can Help People with CFS or FM
By Bruce Campbell
(From the series Recasting Relationships and Building Support.)
If you are a family member or friend of someone with Chronic Fatigue Syndrome (CFS) or fibromyalgia (FM), thank you for reading this article.
CFS and FM may have had major effects on your life as well as on the life of your loved one. You may well have more to do now than before and your dreams for the future may have changed. So thank you, again, for considering ways you can help your loved one.
[Note: Chronic Fatigue Syndrome is also known by other names such as myalgic encephalomyelitis (ME), ME/CFS and, formerly, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)].
How to Help the Person Who Is Ill
Some help you might give is practical, such as taking on tasks the person with CFS or FM is no longer able to do or providing transportation to doctor appointments. Some help is emotional, offering a listening ear or some reassurance.
But perhaps the biggest aid, and the we’ll focus on in this article, is supporting the person with CFS or FM in her efforts to live well with long-term illness.
The key fact about CFS and FM is that the severity of symptoms and sometimes even the course of the illness are affected by how a person lives his or her life. The effects are so great that lifestyle change is the treatment of choice for the two conditions.
In the words of well-known CFS and FM physician Dr. Charles Lapp, CFS and FM "are best managed with adaptation and lifestyle changes....There is no drug, no potion, no supplement, herb or diet that even competes with lifestyle change for the treatment of CFS or FM."
As a family member or friend of someone with CFS or FM, the way you interact with your loved one will have a significant effect on her, helping her gain control over her condition or making that goal more difficult. The discussion below describes how you can help in seven different areas.
The help you offer is likely to bring benefits to you as well as to your loved one. For example, if you help your loved one to pace herself, she is likely to have a much more predictable life, reducing uncertainty for herself and those around her.
Probably the single most important lifestyle change for controlling symptoms and increasing the likelihood of improvement is pacing, which means adjusting 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. 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 entering our program functions around 25% of normal.
Pacing also usually includes integrating regular rest periods into the day and other strategies such as having short activity periods; switching between high-intensity and low-intensity activities; recognizing limits on mental, social and emotional activity as well as physical; and taking extra rest and reducing activity for vacations and other special events
Pacing offers the possibility of a more stable and predictable life. With pacing, people with CFS and FM can live their life according to a plan, rather than in response to symptoms, giving them a sense of managing their illness rather than the illness being in control.
Learning pacing is a gradual process, usually taking a period of several years and involving the use of multiple strategies.
To give an example of the value of pacing, one person in our program reported that for several years she had week-long visits from her daughter and granddaughter that triggered relapses lasting up to six months each. Since she learned to use pacing during the visits, her recovery time has been two days per visit.
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).
For more on pacing, see the articles in the Pacing archive and also the Pacing Tutorial.
Poor sleep is one of the most common and troublesome issues in both CFS and fibromyalgia. Patients often experience sleep as unrefreshing. They may spend a night in bed but wake up as tired as before.
Other sleep problems are common as well, such as difficulty getting to sleep, waking in the middle of the night or early in the morning, and oversleeping.
Sleep management plans usually include a combination of strategies from three categories:
- Sleep environment and habits
- Sleep disorders
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 by the sleep partner. Some couples solve snoring problems by sleeping in separate rooms.
Medications are often used to treat poor sleep for people with CFS and FM. Sometimes multiple medications are used, such as one to help the person fall asleep and another to help her stay asleep. For specifics, see the article Solutions for Sleep.
Third, sleep disorders are very common with CFS and FM, affecting a majority of people with CFS and FM, perhaps as many as 80%. Treating them can have a dramatic effect on symptoms. Two of the most common sleep disorders and how to treat them are discussed in the article in the last paragraph.
For more on treating sleep, see the article Solutions for Sleep.
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 the physical basis of 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. Controlling stress, along with pacing and improving sleep, are probably the top three approaches for managing CFS and FM.
One of the best stress management strategies is preventive: avoidance of stressful situations. This can include avoiding foods and other substances which trigger allergic reactions, and also avoiding or minimizing exposure to bright light, noise and crowds.
Many people with CFS and fibro are selective about their exposure to television and movies, avoiding material that is emotionally arousing and shows with rapid scene or sound changes.
Family and friends can help the person’s stress by learning what factors create stress for their loved one and working together to find ways to reduce or avoid them.
Help may include supporting the loved one in taking rests and leading a structured life, adjusting diet to avoid allergic reactions, and limiting exposure to over-stimulating environments by visiting restaurants when they are not busy or watching a movie at home rather than going to a movie theater.
For more on this topic, see the articles in the Stress Management archive.
Fighting the Fog (Cognitive Problems)
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.
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 FM feel confused by sensory input coming from several sources at one time and are therefore more 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.
You are likely to have more productive discussions with someone who has CFS or fibromyalgia if you talk in a quiet environment free of distractions.
Another solution to sensory overload is to have an orderly physical environment. Removing clutter is a way to control brain fog by limiting sensory input. A related strategy 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. A patient may be able to get twice as much done if they schedule activity for good hours of the day.
Managing Special Events
Anything out of the ordinary --a vacation, a holiday celebration or even having people over for dinner-- creates a special challenge for people with CFS and/or FM. These non-routine, events 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 physical toll of a special event.
The most effective strategy is to take more rest than usual, 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. You can help by understanding your loved one’s need for more rest at these times.
The other two strategies people often use are to plan in detail and to discuss plans with others. For travel, planning may include scheduling in advance the activities for each day of the trip. It might also mean using a wheelchair or motorized cart in airports.
Discussion involves sharing plans so all involved understand and have the opportunity to identify what tasks can be shared or delegated to relieve the burden on the person who is ill.
All these strategies imply that the person who is now more limited will probably have to change 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.
As mentioned in the discussion of pacing, how a person handles a special event makes a big difference to her enjoyment of the event and to the price she pays. In the example given earlier, one person in our program used the special event strategies just described and reduced the relapse triggered by houseguests from six months to two days.
Most people with CFS and fibromyalgia find that their emotions are more intense and harder to control than they were before they became ill. The technical term is labile. As one person in our program wrote, "My emotions are much more sensitive than ever before. I cry more easily, and I have less emotional reserve."
One example of intense emotions among people with CFS and FM is irritability. Patients can easily feel frustrated, which often leads to unfortunate outbursts of anger that may be directed at those around them.
We strongly advise patients to take responsibility for the problems their illness creates for others, suggesting that if their illness affects their moods, they use a time when they are feeling well to make a plan of things to do to help them feel better when their mood is low, so they don't inflict their negative moods on others.
For example, they might plan to respond to feeling irritable by taking a rest (irritation is frequently triggered by overexertion), taking a walk or listening to music.
Making Dietary Changes
Dietary changes are common with CFS and FM. Most CFS and FM patients are intolerant of alcohol and many are sensitive to caffeine and other stimulants; sweeteners such as sugar and corn syrup; food additives; and tobacco.
About a third of CFS and fibromyalgia patients have food sensitivities or food allergies. Negative reactions include gastrointestinal symptoms such as heartburn, gas, nausea, diarrhea constipation, as well as an increase in their 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. Often the solution is to eliminate a food or food group from the diet. Sometimes the patient's diet is restricted to a limited number of foods, calling for family accommodation.
How people with CFS and fibromyalgia live their lives has a big effect on their symptoms levels and quality of life. Family and friends can help by supporting their loved one’s efforts to adapt to the their condition.