Coping with the Impacts of CFS and FM
(Second in the series For Family and Friends.)
The changes brought by Chronic Fatigue Syndrome and fibromyalgia are usually dramatic and far reaching. A person who used to be healthy now has substantially less energy than before, has trouble thinking clearly, and finds himself or herself easily overwhelmed by stress or even by light and sound or the weather.
This article describes the impacts of CFS and FM, and strategies for addressing them. [Note: CFS is also known as myalgic encephalomyelitis (ME), ME/CFS and, formerly, Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).]
There is so far no cure for either CFS or fibromyalgia, but there are many ways to alleviate the symptoms of the two conditions. While treatments don't heal either CFS or fibromyalgia, they can reduce pain and discomfort, bring greater stability, and lessen psychological suffering. Most patients treat their symptoms using a combination of medications and changes in how they lead their lives.
Since no medication is consistently effective in treating either condition, we recommend that patients find a doctor or set of doctors willing to experiment to find what works in their individual situations. For treatments of common symptoms of the two conditions, see the series Treating CFS and Fibromyalgia.
It is also very important to understand that symptom levels are affected by the actions of patients and those around them. How a person lives with Chronic Fatigue Syndrome or fibromyalgia, and how his or her family and friends act, will intensify or help to alleviate the symptoms of the two conditions.
Activity Limits & Pacing
Both Chronic Fatigue Syndrome and fibromyalgia impose limits on patients. The severity of illness can vary greatly, but usually patients function somewhere between about 15% and 50% of normal.
The limits imposed by illness means that patients have less energy. People with CFS and FM usually do less around the house than when they were healthy. They often reduce their hours at work or stop working. And, they have less energy for relationships.
The limits brought by illness require many adaptations, both practical and psychological. For many people, the bigger challenge is psychological: accepting that life has changed and learning to see life in a new way. This acceptance is not resignation, but rather an acknowledgment of the need to live a different kind of life, one which honors the limits imposed by illness.
In the words of one person in our program, "Getting well requires a shift from trying to override your body's signals to paying attention when your body tells you to stop or slow down." This process of accepting limits and learning to live a different kind of life usually takes several years.
In terms of practical adjustments, perhaps the single most important strategy for controlling symptoms is for the patient to adjust activity level to fit the limits imposed by CFS or fibromyalgia. We call this "living within the energy envelope" or pacing.
Rather than fighting the body, with repeated cycles or push and crash, the patient seeks to understand the body's new requirements and to live within them. Because it is not possible to do everything with limited energy, the patient and family must choose those things that are most important.
Family members have an important role to play in helping the patient to adapt to limitations. The first and most significant 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. Another, as discussed in the next section, is to adjust the family workload.
Adjusting Family Roles
CFS and fibromyalgia usually lead to a redistribution of household tasks: cooking, cleaning, shopping, laundry, bill paying, etc. For those things the patient can't do or can't do in the same way as before, there are two main options: reassigning and simplifying.
Reassigning means finding someone else to do part or all of a task that the patient used to do. Probably the most common solution is for other family members to take over some or even many of the duties formerly done by the patient. But there are other solutions as well.
If there are children are living at home, they may contribute in various ways, such as by keeping their rooms clean, helping with meal preparation and doing their own laundry. Another solution used by some families is to employ a cleaning service to take over housecleaning or to come in occasionally.
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. Some people adopt new standards for themselves. One patient told us, with a smile, that she now views dust as "something that protects my furniture."
While accommodations to the patient's illness are often required, the patient may be able to increase the amount of work done by changing how she or he works. For example, several short periods of meal preparation with a break in between may allow the patient to make dinner without intensifying symptoms. The length of work periods may be increased by sitting rather than standing.
Also, by spreading housework over over a week rather than doing it all at once, someone with CFS or FM can avoid the push and crash syndrome. Finally, most patients have good and bad times of day. It may be possible to get more done and avoid a flare up of symptoms by working during the good hours of the day.
The financial effects of CFS and FM vary greatly. The financial situation of some families is not affected or affected only slightly. This may be true if the person was not employed when she or he became ill or was at or near retirement. Some people are able to arrange an early retirement with a slightly reduced pension.
A few patients, who continued working while their symptoms worsened, have told us that they wished they had evaluated their financial situation earlier and retired sooner.
For other families, illness creates moderate to severe financial strain. For some, family income is cut drastically. If the patient is unable to work, income may be reduced by half or more. A successful application for disability payments can reduce the deficit. (About 40% of the people in our program report that they receive disability from the government, private insurance or both.)
Families in our program have used several strategies in response to financial stress. In some cases, the well spouse has changed jobs to get work at higher pay or with better health insurance benefits. Some also report that they established financial discipline by strict budgeting and a reduction in spending. Others have moved to smaller, less costly homes, a strategy which can reduce both expenses and household tasks.
Poor sleep is one of the most common and troublesome issues in both CFS and fibromyalgia. Patients often experience sleep as unrefreshing; a person spends a night in bed but wakes 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 over sleeping.
The treatment of sleep problems usually includes prescription medications, but lifestyle changes can also be useful. The family can help by being supportive of adaptations that improve sleep. Good sleep can be aided by having an environment conducive to sleep and by having good sleep habits.
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 patient greater control over other elements in the sleep environment. Having a regular bedtime is also helpful.
Other factors that affect sleep include overactivity, stress and worry. Too much activity can create a sense of restlessness, sometimes call 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. Stress often leads to muscle tension, which makes falling asleep more difficult. Worry, too, can make it harder to fall asleep. Practices that reduce stress and worry will aid sleep.
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 limit cognitive problems. 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.
A conversation with a CFS or fibromyalgia patient is likely to be more productive if conducted in a quiet environment, free of distractions like television. Some families in which patients are bothered by sound use headphones for the sound portion of television broadcasts. In some cases, the headphones are worn by the patient, in other cases, by a family member.
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 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. Probably the most common pattern is a gradual improvement as the day wears on, with a slowing down in the evening. But for some patients mornings are the best times of day, for others evenings.
The important thing is that each patient find the time that works for them and that the family honor it. 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.
Patients often have trouble predicting how they will feel from day to day. This often leads to canceling or adjusting plans, sometimes at the last minute. Fluctuations in symptoms can have several causes. One is the waxing and waning common to many chronic conditions. In addition, fluctuations may be due to changes in the weather, poor sleep, overactivity or stress.
Perhaps the most common coping strategy is flexibility. Plans may have to be changed or cancelled. Family members adjust better if they recognize that unpredictability is a part of illness and have alternate activities they can do.
Some families have developed systems for understanding the patient's ever-changing condition. One system involves having the patient rate himself or herself each day on a ten point scale. A rating of 1 might be used for a very good day, with very low symptoms. A rating of 10 would mean severe symptoms and the need to stay in bed.
Some portion of symptom fluctuations can be brought under control over time. As mentioned earlier, pacing offers a way to bring greater stability to life, and therefore fewer surprises. Also, maintaining a stable environment reduces stress, which is a major trigger of greater symptoms.
So a sensible response to unpredictability is a combination of flexibility and lifestyle adaptations that promote a consistent activity level, good sleep and control of stress.
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.
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." Another said, "Just recognizing that emotions are heightened as a result of CFS really helped me. Before learning that, I was quite puzzled by why I got upset about little things."
The strength of emotions can create a vicious cycle in which illness intensifies emotions and then emotions, in turn, intensify symptoms. For example, people in pain may feel depressed. People who are depressed have a lower threshold for pain. Similarly, pain can create frustration, which can lead to muscle tension, which in turn intensifies pain.
The process by which feelings intensify symptoms occurs even with positive emotions, as suggested in a comment from another participant in our program who said, "I cried at one of the classes, because I was so happy to be around people who understood me. Almost immediately, I had an attack of brain fog." Whether positive or negative, any experience that triggers adrenaline, is likely to intensify symptoms.
One example of intense emotions among CFS and FM patients is irritability. Patients can easily feel frustrated, which often leads to unfortunate outbursts of anger that may be directed at those around them. In our self-help course, we advise patients to take responsibility for the problems their illness creates for others.
We suggest that if their illness sometimes 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.
Stress is a challenge everyone, but it is especially difficult for people with long-term illness and those around them. Illness adds new stressors to those that all families face and, unlike crises, these stresses are ongoing.
For the patient, there is an additional source of stress, one that is inherent in their illness. Chronic Fatigue Syndrome and fibromyalgia are very stress-sensitive illnesses. They reset patient'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 for people with CFS and FM. Stress is multiplied at the same time that they are made more vulnerable to the effects of stress.
Strategies couples can use for dealing with stresses in their relationship are discussed in the next article. This section focuses on how the family can help reduce the patient's stress. Being supportive of a patient's efforts to control stress, along with helping a patient to live within the limits imposed by illness, are two of the most helpful things the family can do to promote the patient's quality of life.
Pacing is one effective way to control stress. Pacing techniques include keeping activity level within a person's limits, taking daily rests, using routine, scheduling activity based on priorities, and timing activity for the best hours of the day.
Other stress reduction approaches include de-cluttering (for example, reorganizing the kitchen or discarding unused possessions), limiting exposure to media, limiting contact with some people, avoiding crowds, and making mental adjustments (such as letting go of outdated expectations).
For many people, work is a major stressor, usually because the demands of a job are greater than a patient's energy envelope. Some patients have responded by changing their work situation. These changes have included switching from full-time to part-time work, moving to a less demanding job, working from home, adopting a flexible schedule, and leaving the work force, usually through early retirement.
Light, noise and crowds create stress for many patients. Avoiding those situations or limiting the period of exposure can help the patient control symptoms. Many patients are selective about their exposure to television and movies, avoiding material that is emotionally arousing and shows with rapid scene changes.
Novelty is another source of stress. It takes more energy to respond to a new situation than it does to something familiar. One response is to make life predictable. Some patients have done that through routine: living their lives according to a schedule. They have been able to reduce the surprises and emotional shocks in their lives, and thereby reduce their stress.
Weather and Sense Overload
Two other factors that affect CFS and fibromyalgia patients are weather and sensory overload.
Changes in the weather or particular types of weather can affect patients' symptom levels. Probably the most common reaction of this sort is fibromyalgia patients experiencing more intense symptoms during times of high humidity. The best family coping strategy is to accept that the patient will suffer more and do less during these times.
As mentioned earlier, most patients are sensitive to noise or light, or to sensory input coming from more than one source at the same time, for example having a discussion with a television on at the same time. The most helpful response is to tailor sensory input to the patient's limits.
This will often mean limiting sensory information to one type at a time, for example, talking without any background noise. It may also mean socializing with only one or a small number of people, rather than in large groups, and visiting restaurants and other public places in off-peak hours.
Additional Medical Problems
Managing symptoms is complicated by the fact that people with CFS and fibromyalgia often have one or more additional medical problems. A majority of people initially diagnosed with CFS or fibromyalgia are later diagnosed with the other as well.
In addition, both conditions are often accompanied by additional medical issues, such as irritable bowel syndrome (IBS), food and chemical allergies, myofascial pain, neurally mediated hypotension (NMH), Lyme disease, depression, and sleep disorders such as apnea and restless legs syndrome. (For more on this topic, see the article Overlapping and Related Conditions.)
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 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. Solutions include dual meal preparation or change of diet by other members of the family.