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Surprising Symptoms

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By Bruce Campbell

ME/CFS and fibromyalgia (FM) come with many unexpected and disconcerting aspects. For example, you may feel relatively well one day, then spend the next day in bed. Or your fatigue or other symptoms may be out of proportion to your activity level.

You may have cognitive problems such as trouble finding words, poor memory or a general feeling of mental fogginess. Or you may experience symptoms triggered by noise and crowds.

We have come to call these puzzling aspects of ME/CFS and fibro "surprising symptoms." This article describes nine and offers ideas about how to deal with them.

Delayed Effects

A central aspect of ME/CFS and FM is delayed effects from activity. You feel fine when you are doing something, but fatigue, pain and other symptoms hit you a few hours later or even the next day. The solution is to find your body's limits and then live within them.

A way to determine limits for individual activities is to try different lengths of time and note how you feel afterwards. You can get a more comprehensive understanding of limits by spending a few minutes a day keeping a health log. Records reveal patterns and help you to discover the many different factors that contribute to symptoms.

Once you know your limits, you can live within them using pacing strategies that include reducing your overall activity level, taking daily rest breaks, having short activity periods, switching between tasks, making use of your best time of the day, using reminders, and having personal rules.

For more on pacing, see the articles in the Pacing archive and our Pacing Tutorial.

Post-Exertional Malaise

This term means fatigue out of proportion to the energy expended. For example, you might have to rest for an hour after a trip to the grocery store. Or you may be able to walk for 10 minutes with no increase in symptoms, but walking for 20 minutes results in fatigue so severe that you have to lie down afterwards. Pacing strategies can help.

One is to take frequent rest breaks, stopping to recharge your batteries before you reach your limit ("stop before you drop"). Another is to modify how you do things. For example, one person who used to rest after grocery shopping was able to eliminate the rests after she began using a scooter in the store.

Brain Fog (Cognitive Problems)

Most people with ME/CFS and many people with fibromyalgia are troubled by cognitive problems, often called "brain fog" or "fibro fog." The difficulties include being forgetful, feeling confused, difficulty concentrating and the inability to speak clearly.

Brain fog can have several causes: overexertion, stress, poor sleep, multi-tasking (doing more than one thing at a time), sense overload, and the side effects of medications.

Strategies for reducing fog include pacing, stress management (see next section), improving sleep, doing one thing at a time, avoiding overstimulation and changing medications or dosage levels. Additional strategies include using lists and other reminders, having an orderly house, using routine, doing mental activities during hours of greatest alertness. 

For more, see the article Lifting the Fog: Treating Cognitive Problems.

Stress Sensitivity

ME/CFS and FM both increase the amount of stress in most people's lives and make people more vulnerable to the effects of stress. We call the latter factor "resetting the body's stress thermostat." The effects of a given level of stress are greater than they would be for a healthy person.

Vulnerability to stress makes managing stress a high priority. There are two main approaches to controlling stress: stress reduction and stress avoidance. See the articles in the Stress Management archive.

Sensory Overload

People with ME/CFS and FM are often sensitive to noise, light, movement or sensory input coming from several sources at the same time. You can reduce sensory overload by making adjustments in how you live. For example, you may be able to understand what you read better if you turn off the TV while reading or move to a quieter place.

If noisy restaurants bother you, try visiting during quiet times. If large groups feel overwhelming, try getting together with only a few people. If media bother you, limit your exposure, especially to movies and TV with frequent scene changes.

Emotional Sensitivity

ME/CFS and fibromyalgia often make emotional reactions stronger than they were before and harder to control. 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."

The intensification of feeling occurs even with positive emotions. Any experience that triggers adrenaline seems to intensify emotions.

Three strategies for dealing with emotional sensitivity are: 1) distraction: turn your attention to something other than the trigger of your emotions; 2) rest: see your reaction as a sign that you're outside your limits and take a time out; and 3) communication: tell your family and close friends about the effects of your condition on your emotions, so they will better understand your reactions.

Irritability (Crankiness)

Irritability is common aspect of ME/CFS and FM, one related to emotional sensitivity. Often crankiness is triggered by overactivity and overstimulation; the antidote is a time out. In the words of one person, "I take crankiness as a sign that I am outside my energy envelope and need rest."

Another said, "When irritability and impatience settle in, I know I've exceeded my limits. At this point, it's best I take a step back, rest, distract myself with a book or music, take something for pain and mostly keep to myself."

Tired But Wired

This is the combination of exhaustion and a racing mind. Many people attribute the wired sensation to the overproduction of adrenaline and respond with meditation or listening to quiet CDs. If the experience occurs consistently at night, one solution is to have a winding down period of an hour or so before going to bed. 

Medication Sensitivity & Side Effects

People with ME/CFS and FM are extremely sensitive to medications, so patients are usually started on dosages that are a small fraction of normal dosage levels. Many medications cause fatigue and mental confusion, so patients and their doctors have to monitor side effects closely.