Treating Post-Exertional Malaise in Chronic Fatigue Syndrome

Post-exertional malaise (PEM) is a key symptom of chronic fatigue syndrome (ME/CFS). It causes a spike in symptoms and a massive energy crash after what other people would consider minor exertion.

PEM is one of the most debilitating symptoms of ME/CFS. Still, we don't yet have any drugs that treat it. However, you may be able to treat and manage it in a few different ways, including:

  • Rest, pacing, and lifestyle changes
  • Nutritional supplements
  • Stress management
  • General treatments

This article will walk you through each of these steps, looking at practical ways for you to manage PEM. It'll also look at the controversy surrounding exercise for PEM and ME/CFS.

1

Rest, Pacing, and Lifestyle Changes

colorful Spoons on a blue background

Brigitte Sporror / Getty Images

It's better to prevent PEM than deal with symptoms. A 2020 study quotes many participants as saying complete rest is the only thing that helps alleviate PEM once it starts.

Preventing PEM often means changing the way you do things. Basically, you have to gear down your activity level to what your body can handle.

That may mean giving up activities you love and paring your life down to the bare essentials. It's a difficult process. But it can make a huge difference in your quality of life.

Some people call this "living within the energy envelope." The most popular explanation in the patient community is an essay called "The Spoon Theory" by Christine Miserandino.

A 2012 consensus document on ME/CFS showed people with the disease consistently rated pacing as one of the most helpful options.

You can learn pacing techniques to make the most of your productive time. These may include brief bouts of activity alternating with rest, or tackling higher priority tasks first.

Don't Make Comparisons

Your ideal activity level is unique. Don't measure yourself against other people, even others with ME/CFS. Learn your own body's limits and stick to them.

2

Nutritional Supplements

Vitamins on a white background

David Malan / Getty Images

Researchers haven't done much work specifically on supplements for PEM. But some healthcare providers make recommendations based on known functions of supplements, abnormalities associated with PEM, and anecdotal information from people with the condition.

Supplements sometimes suggested include:

However, these have been studied for ME/CFS in general or for fatigue in ME/CFS. Researchers don't yet know whether they're effective against PEM specifically.

Be aware of side effects and possible negative interactions of supplements. It's important to talk to your healthcare provider and pharmacist about all the supplements you take.

Recap

PEM is a key symptom of ME/CFS. Complete rest is generally the best thing for recovering from PEM. Pacing and lifestyle changes can help you avoid it, which is easier than trying to treat it.

A few nutritional supplements have scientific backing for ME/CFS in general. They include CoQ10, NADH, and probiotics. However, they haven't been studied specifically for PEM.

3

Stress Management

Woman looks stressed while reading a book.

Marc Romanelli / Getty Images

ME/CFS is believed to be worsened by stress. And stress management may help you manage key symptoms, including PEM.

Ties to stress do NOT mean ME/CFS is a psychological illness. Stress has myriad physiological causes and effects. One that's received a lot of attention from ME/CFS researchers is the stress hormone cortisol.

In a 2014 study on stress, researchers concluded that stress management had an indirect effect on PEM. Essentially, those with better stress management had better morning cortisol levels. Those cortisol levels were linked to less severe PEM.

4

General Treatments

Medications on a white background

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ME/CFS treatments not directly aimed at PEM may help with this symptom by lessening the overall severity of your disease. You have a lot of treatment options to explore with your healthcare provider.

Again, be sure to discuss all treatments with your healthcare team to ensure your choices are safe and likely to be effective.

You'll need to find a unique combination of treatments and management strategies tailored to your specific symptoms and situation.

5

Exercise: The Controversial Approach

Man sweating in a gym

Mike Harrington / Getty Images

Exercise is a controversial topic when it comes to ME/CFS. You're probably asking, "How can exercise help when it's the cause of PEM in the first place?"

Most experts agree people with ME/CFS need to get some exercise. Muscle atrophy and inactivity make you even less able to handle exertion. They also increase other symptoms (pain, stiffness) and your risk of other illnesses.

However, you can't handle therapeutic exercise like other people. You must know your limits and stick to them strictly.

Some people with ME/CFS turn to physical therapy, but with mixed results. It's important your therapist is familiar with your inherent restrictions so they don't push you too far and make you worse.

A segment of the medical community advocates a treatment called Graduated Exercise Therapy (GET) as a first-line treatment for ME/CFS. They point to research suggesting that it's beneficial.

On the other side, though, is research suggesting that GET is actually harmful to people with ME/CFS.

Recap

Stress management is important for managing ME/CFS. It may have an indirect effect on PEM, as well.

General treatments for ME/CFS may ease PEM by making the overall disease less severe. Discuss treatment options with your healthcare provider.

Exercise as a treatment is controversial, especially since it triggers PEM. Some practitioners recommend Graded Exercise Therapy while others believe it's harmful.

6

Summary

Rest may be the best treatment for post-exertional malaise, which is a hallmark symptom of ME/CFS. Pacing and lifestyle changes can help you avoid PEM.

Nutritional supplements (CoQ10, NADH, probiotics), stress management, and general ME/CFS treatments may indirectly improve PEM by lowering the severity of the disease.

Exercise is a controversial approach to treating ME/CFS and PEM.

Be sure you talk to your healthcare provider about any treatments you'd like to try.

7

A Word From Verywell

ME/CFS can be debilitating and PEM is a key reason why. The scarcity of research on the disease and its major symptoms can be frustrating and leave you not knowing what to do.

Keep in mind that many people with ME/CFS have found the right set of treatments for them. Work with your healthcare provider, try a variety of approaches, and stick with what works, even a little.

If you can find several treatments and management strategies that all help some, eventually they can add up to a big improvement.

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