Post-Exertional Malaise

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By Bruce Campbell

Do you view special events like vacations and the holidays with apprehension because they always seem to lead to relapses? If so, you're not alone.

More than 90% of people with ME/CFS who attended a webinar on pacing for special events said that they typically experienced a crash after special events. For most, the relapse lasted from four days to more than a month.

This article will show you how to use pacing to avoid relapses, whatever triggers them.
 

The Cost of Post-Exertional Malaise

One way to understand how pacing might be helpful is by looking at what happens when you don't pace. The result of overdoing, of being active beyond your body's limits is an intensification of symptoms called Post-Exertional Malaise or PEM.

The key fact about PEM is that it is out of proportion to the overdoing. Let me explain using the idea of "energy dollars," a concept borrowed from our friend Dr. Lapp.

Dr. Lapp talks about limits by saying that people with ME/CFS and fibromyalgia get a certain number of "energy dollars" every day to spend on various activities. If the average healthy person gets $100 a day to spend on various activities, the average person with ME/CFS or FM gets around $25.

(I'm making that estimate based on the fact that the average person in our self-help program rates herself at 25% of normal when she starts the first class.)

If a healthy person overspends by $5, she is $5 in the hole, an amount she can pay back with a little rest. But if someone with ME/CFS or FM overdoes it a little, say by spending $30 in a day, that puts them at -$5, but they also get charged a $30 PEM "overdraft fee," putting them $35 in the hole. They have to deposit $35 to get back to zero.
 

Examples

Let me give you some examples of how Post-Exertional Malaise plays out in the lives of people with ME/CFS and FM. One person who comes to mind is John, a member of our program. He functions about 45% and is able to spend an hour a day gardening without intensifying his symptoms.

But he told me that when he gardened for an extra hour one day, the extra time put him in bed for the rest of the day and triggered a relapse that lasted ten days.

Toni Bernhard, another person who has ME/CFS, writes in the preface to her book How to Be Sick that "some days I would get so involved in a chapter that I'd work too long. The result would be an exacerbation of my symptoms that would leave me unable to write at all for several days or even weeks."

Dean Anderson, a recovered person with ME/CFS whose worst was about 65% of normal and who worked out while ill, writes about exercising with ME/CFS:

"The penalty for over-exercise was a relapse which started about 24 hours after the infraction and lasted a week or more. Once, when I let someone talk me into going hiking, the penalty was a relapse of several months."

Finally, Rose, another person in our program and someone who is bedbound with ME/CFS, used to experience significant relapses triggered by houseguests.

Until she tried some pacing strategies I describe in the article Pacing and Houseguests, she felt greatly frustrated by family visits. She tried to be careful, but the visits always set her back greatly. Each year, it took her several months to get back to where she was before the visit.

So that's the bad news about post-exertional malaise: the penalty is out of proportion to the infraction. But there is some good news as well. If you can avoid PEM, think of the suffering you can avoid!
 

Where Do Your Energy Dollars Go?

When you think of using energy, physical activity probably comes to mind, but it is just one way to use your energy dollars. We have identified six others as well.

Physical activity: This category refers to things like bathing and dressing, cooking, cleaning, doing laundry, shopping, driving, standing, exercise and work (for those who are able).

This area is a good place to start if you want to determine your limits. For example, you can count your steps using a pedometer to get a general idea of your limit for physical activity. For more, see the article Pedometers: A Tool for Pacing.

Mental activity: These are activities that require concentration, such as reading and working on the computer. You can determine limits in this area by experimenting with doing them for varying lengths of time and noting the effects on your symptoms. 

Social activities: Third is the time you spend interacting with other people, in person or on the phone. You can experiment to find time limits in this area as well. For in-person meetings, you can ask yourself whether the setting or number of people make a difference.

Sensory experience: People with ME/CFS and FM are often highly sensitive to sensory experience, which includes sensitivity to food and other substances (including medications!), vulnerability to noise and light, and sensitivity to weather and the seasons.

Emotions: Experiencing emotions takes energy. For example, if you feel frustrated about your limits, that frustration will use some of your energy. Likewise, you can spend energy in worry. If you can find ways to reduce the drain caused by some emotions, you can free energy for productive use.

Stress: ME/CFS and FM add new stresses while simultaneously making people more vulnerable to stress (resetting the stress thermostat). Anything you can do to manage stress will free energy for productive use.

Heart Rate: A heart rate above a personal limit can trigger PEM. For more, see the article Pacing By Numbers: Using Your Heart Rate to Stay Inside the Energy Envelope.