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The Double Challenge of Stress in ME/CFS and Fibromyalgia

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By Bruce Campbell

(Note: The first article in a four-part series on managing stress in ME/CFS and fibromyalgia. The former is also known as Chronic Fatigue Syndrome or CFS.)

Stress can be a challenge for anyone, but it can be doubly difficult for people who have ME/CFS or fibromyalgia.

In addition to whatever stresses you had before becoming ill, sickness adds new ones, including the discomfort of symptoms, isolation, financial pressure, loss of identity and meaning, strained relationships and uncertainty about the future.

Second, there is something special about ME/CFS and FM that makes people with them more sensitive to stress than before. It is as if ME/CFS and fibromyalgia reset your "stress thermostat," so that the effects of a given level of stress are greater than they would be for a healthy person.

I remember how any kind of conflict set off my symptoms and often things as simple as making decisions like what toothpaste to buy felt overwhelming. Even modest amounts of stress greatly intensified my symptoms, creating a feedback loop in which my symptoms and my response to them intensified one another.

Once I realized how vulnerable to stress I had become, I decided that dealing with stress sensitivity had to be a big part of my effort to manage CFS, I would say that controlling stress was one of the two most important things I did to cope with CFS, the other being pacing.

A friend's experience illustrates the same points in more dramatic fashion. When I ran into her a few years ago and mentioned our program, she said, “I have fibromyalgia, but I’m doing much better.” When I asked her what made the difference, she replied, ”I divorced my husband.”

Marital conflict is certainly one way to reset the stress thermostat, but her experience also illustrates how the connection between stress and symptoms works in both directions. Her fibro was made worse by marital troubles, but when that stressor was removed, she experienced significant improvement.

In sum, we face a double challenge regarding stress: our stresses are multiplied at a time when our bodies are more vulnerable to the effects of stress. But by using stress management techniques like those described in this series, we can learn how to interrupt the cycle in which our symptoms and our stressors reinforce one another.

Sources and Signs of Stress

I suggested above that one reason stress is such a big challenge in ME/CFS and FM is that it can come from many different sources. One source, feelings, is the focus of articles in the Emotions archive. Here’s a list of other factors that may cause stress:

  • Symptoms Ongoing discomfort is debilitating and worrisome
  • Limits Frustration due to smaller energy envelope
  • Loss Many losses: health, income, friends, etc.
  • Isolation Stress from time alone and from feeling different
  • Money Financial pressure
  • Other illnesses Additional medical problems add to stress
  • Relationships Often strained; some may end
  • Daily Hassles Small frustrations of life often take a toll
  • Change Anything that requires alteration of routines and plans
  • Special Events Non-routine activities often trigger relapses
  • Emergencies Others’ illnesses, death in family, etc.
  • Thoughts Unrealistic expectations or feeling helpless
  • Uncertainty Worry about the future
  • Sound/Light Sensitivity to sense data
  • Allergies Sensitivity to foods and/or chemicals

Stress leads to bodily changes. Any of the following can indicate that we are under stress: 

  • Muscle tension (especially in head, neck & shoulders)
  • Feeling anxious or nervous
  • Moodiness
  • Feeling depressed
  • Nervous movement (e.g. tapping fingers or feet)
  • Irritability
  • Sleep problems (trouble falling asleep or staying asleep)
  • Grinding teeth or clenching jaw
  • Increase in ME/CFS or FM symptoms

Approaches to Managing Stress

Many people in our program manage stress with pacing strategies, such as reducing their activity level, learning to say "no," taking daily rests and using routine. Some describe a change in their employment situation as a stress reduction measure. These work 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 taking early retirement.

Other frequently used stress management approaches include doing a daily relaxation procedure, de-cluttering (e.g. reorganizing the kitchen or discarding unused possessions), limiting exposure to the media, limiting contact with some people, avoiding crowds, getting help with household chores and making mental adjustments (such as letting go of unrealistic expectations).

Because there are so many causes of stress, it pays to use a combination of strategies to manage it. A typical stress management plan might include:

  • Daily relaxation procedure
  • Regular exercise
  • Daily scheduled rest breaks
  • Pleasurable activities every day
  • Living by a schedule
  • Avoiding noisy environments and negative people

Here is how three people in our program responded when asked how they manage stress.

I do a variety of things to manage stress, such as deep breathing, listening to relaxation tapes, getting regular massages, walking with my dog, and writing in my journal.

The ways I try to handle stress are: meditating daily, scheduling a regular time [to go to] bed each night, keeping our home an emotionally welcoming place for my husband, engaging in pleasurable activities, and avoiding unwanted situations [that] drain my energy.

For stress reduction I use stretching and yoga; relaxing activities like time in our hot-tub or in the swing in the back yard; spiritually enhancing activities such as prayer and Bible study; and fun activities both mental or physical, like reading, movies, playing with the grandchildren, playing with the dog, and spending quality time with my husband.

The remaining articles in this series describe two broad categories stress management: stress reduction and stress avoidance. The first involves retraining yourself, learning how to respond differently to stressors so that they do not have the same effect as in the past.

The second approach is preventive, taking measures to avoid stressful circumstances. The combination is a powerful response to the stresses brought by long-term illness.