Coping with the Impacts of ME/CFS and FM

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By Bruce Campbell

Chronic Fatigue Syndrome (ME/CFS) and fibromyalgia are like pebbles thrown into a lake. One person may be ill, but ripples from the illness touch those around the patient as well. The two conditions affect many parts of life, including relationships, finances, household tasks, socializing and dreams of the future.

This article describes coping strategies for four of the changes brought by ME/CFS and FM: the unpredictability of symptoms, intensity of emotions, increased stress and the patient's sensitivity to sensory information. Strategies for coping with other changes are discussed in the article Family Adjustments to ME/CFS and FM.
 

Unpredictability

People with Chronic Fatigue Syndrome or fibromyalgia often have trouble predicting how they will feel from day to day, or even hour to hour. This often leads to canceling or changing plans, sometimes at the last minute.

Perhaps the most common coping strategy is flexibility. Those around someone with ME/CFS or FM often adjust better if they recognize that unpredictability is common with ME/CFS and FM, and if they have alternate activities in mind.

Where people outside the family are involved, it is common to educate them about the unpredictable course of ME/CFS and FM, and to ask whether they will accept changes in plans. Unpredictability in symptoms, along with limits, often mean that families do less socializing than before and may lose some relationships.

Some fluctuations in symptoms may be caused by factors like the natural waxing and waning that is common to many chronic conditions, but other fluctuations may be caused by how a person lives with her illness. Because some apparent unpredictability is due to factors such as overactivity, stress or poor sleep, it is usually possible to achieve some stability by making lifestyle changes.

Pacing offers a way to escape the cycle of push and crash, and to bring greater predictability. Pacing strategies include taking regular rests and having a consistent activity level from day to day. For more on pacing, see the articles on the Pacing archive page. Also, maintaining a stable environment reduces stress, which is a major trigger of greater symptoms.

One person in our program reviews her life regularly and divides intense symptoms into ones she might have caused and those she didn't. She then plans how to act differently in the future to reduce those in the first group.

In summary, 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.
 

Intense Emotions

Feelings like worry, frustration, grief and depression are common in ME/CFS and fibromyalgia, understandable responses to the disruptions brought by the two conditions. Also, emotions in ME/CFS and FM tend to be intense and hard to control. As one student in our program wrote, "My emotions are much more sensitive than ever before. I cry more easily, and I have less emotional reserve."

Emotional reactions to illness can often be addressed with self-management strategies, but counseling, medications or both may be appropriate as well. For example, the depression that often accompanies ME/CFS and FM can be of two types: situational and biochemical. Situational or reactive depression is a response to a particular set of circumstances, in this case the disruptions and uncertainties created by long-term illness.

People with ME/CFS and FM may also experience a second type of depression. Prolonged stress can alter the biochemistry in the body, creating biochemical depression. Self-management strategies may also be useful for this type of depression, but treatment normally includes medication as well.

Seeking help in dealing with emotions does not imply that ME/CFS and FM are merely psychological problems. Rather, it means that addressing the many changes brought by illness can sometimes include professional counseling and medications. Some counselors specialize in working with individuals and families facing long-term illness.
 

Sensitivity to Stress

Stress is a challenge for everyone, but it is especially difficult for people with long-term illness and those around them. Illness adds new stressors to those that all people face and, for people with ME/CFS and FM, there is an additional cause of stress, because the two conditions are very stress-sensitive.

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 in people with these two conditions, and people with ME/CFS and FM are more vulnerable to the effects of 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. For more, see the Pacing archive.

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 unrealistic expectations).
 

Weather and Sensory Overload

Two other factors that affect ME/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 recognize that the patient will suffer more and do less during these times.

Most people with ME/CFS and FM are sensitive to noise, light and crowds, and to sensory input coming from more than one source at the same time. A helpful response is to limit 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.