Dr. Martina Melzer, published: 05.03.2022

 

Exercise and movement are often a major problem for people with fatigue because they are barely able to become physically active due to fatigue. In ME/CFS, it is a particularly sensitive and controversial topic because of the potential for condition worsening.

Exercise and Post-Exertional Malaise (PEM)

Too much mental, emotional or physical activity can trigger Post-Exertional Malaise, or PEM, in ME/CFS. This is a marked deterioration in condition that usually occurs with a time delay of one to two days and can last for hours, days or even weeks.

What exactly happens in the body is not yet completely clear. However, it is likely that the mitochondria are unable to make enough energy. Mitochondria are the small energy power plants in our cells that produce ATP (adenosine triphosphate). This is virtually our elixir of life. As long as the body does not consume more ATP than it can produce, all is well. For a while, it can also quickly make ATP available again from precursors when we have an increased need.

But if it consumes significantly more energy than it can produce, the organism can no longer keep up. It has to reassemble ATP from its individual building blocks. And this can take several days. People with ME/CFS seem to get into this state of energy depletion very quickly. In addition, or due to this, there is also increased breakdown of protein in the muscles and increased breakdown of metabolic products. The intestinal mucosa becomes more permeable, which can activate the immune system. Presumably, a misdirected activation of the autonomic nervous system has caused this energy crash.

Is physical activity useful in ME/CFS?

Yes, I think so. An ME/CFS specialist once told me that one should not completely forgo exercise, but should do as much as possible - but without overexerting oneself. Otherwise, the problem is that if you don't exercise, your muscles will break down (keyword: deconditioning). In addition, balanced physical activity has a positive effect on the heart and circulation, on the immune system, on sleep, on mood, etc.

However, I also think that you shouldn't force exercise. If the body says: No, I need rest to recover, then you should listen to it. If the body signals: I could do with a bit of exercise, then you can also be physically active.

Under no circumstances would I follow through with an exercise program prescribed by doctors, where it is best to do more every week and meet some kind of goals (keyword: Graded Exercise Therapy). I have done a lot wrong in this regard and harmed myself. It makes much more sense to listen to your body and approach exercise very carefully and cautiously. If you dare to do something more, you test the limits. If you can tolerate it, wonderful. If it was too much, you do less again. If you can even do a little more, all the better. In this way, you can extend your range of activity over weeks or months. A pedometer and heart rate monitor are very helpful (see pacing strategy).

Also, extremely important: exercise shouldn't be stressful, it should not be done in a tense, anxious state with an inner resistance. That only throws the nervous system more out of balance. In retrospect, I might have been further along in terms of exercise if I had focused on the nervous system first and then approached physical activity bit by bit.

What might movement look like for you?

You have to define for yourself what exercise is. What can you imagine now in your current state? What is possible? Exercise doesn't mean jogging, biking, hiking, going to the gym, lifting dumbbells. Movement is so much more. Can you maybe do some light stretching while lying down every day? Is a short walk possible every now and then? Can you do some yoga? Can you use your right and left arms to lift a glass or small water bottle a few times? Can you stretch your body, lift your legs up? Or even go biking, swimming, or a few minutes on a vibration plate?

There are so many ways to move around and stimulate your heart, circulation and lymph a bit, give your organism some oxygen. Again, I recommend a fitness tracker to keep track of your pulse. Measure your heart rate while lying down, sitting, standing, walking, getting up from the bathroom, preparing food, etc. This way you'll know what's strenuous and how. In the Pacing strategy, you'll find links to sites that explain how best to use fitness trackers.

Also, the US Workwell Foundation provides helpful information on their website and YouTube on how to move despite ME/CFS, fibromyalgia or other fatigue disorders:
https://workwellfoundation.org/resources/#edmat

There are also specific yoga approaches for people with chronic fatigue or ME/CFS:
https://www.youtube.com/watch?v=3ndodS22xio

Exercise intolerance and circulation problems: What to do?

People with ME/CFS, POTS, Ehlers-Danlos syndrome or other autonomic nervous system dysfunctions (dysautonomias) often experience discomfort when standing upright. This also affects the ability to walk without problems. Dizziness, blackness before the eyes, nausea, palpitations and tremors suddenly occur. This has also been observed in Long-Covid.

This is probably due, among other things, to the fact that the blood pressure cannot adjust properly when standing up. The blood pools in the legs and abdomen. In addition, there seems to be too little oxygen in the blood.

The organization Dysautonomia International recommends the following steps (preferably in consultation with a doctor or physiotherapist):

  • While lying down, do special exercises that promote blood flow.

 

  • Then rowing with a rowing machine, cycling on a special bike or exercise bike, swimming, strength exercises for calves and thighs, preferably with a heart rate monitor
  • Then walking, biking, running - whatever is possible

More info:
https://www.dysautonomiainternational.org/page.php?ID=43

https://drive.google.com/file/d/1t7sWyUKnZHgxgENl6SB9vVPb5thZZ98r/view

Or follow the account @movement_with_me on Instagram:
https://www.instagram.com/movement_with_me/

Personally, it helps me to wear compression socks. A fitness tracker has also helped me a lot for a long time. And when I'm standing and suddenly have symptoms, I cross my legs and interlock my fingers and tense everything. That promotes blood flow. This was recommended to me by a cardiologist who did the tilt table test. Or: Swing your arms up and to the side and then hold on to a wall or chair and swing your legs forward and back. I do that when I get up from sitting and am about to tip over.

What exercise does for other fatigue disorders

Here I have no experience of my own, so I have to rely on sources. For tips on appropriate movement, see "What might exercise look like for you?" above.

Cancer fatigue: a combination of cardio and strength training improves fatigue in people with cancer. Very important: Do not overexert yourself, but start at a very low level - preferably under supervision!

Depression, Burnout: Chronic exhaustion is one of the most common and most limiting symptoms of depression and burnout. Due to the lack of drive, it is often difficult to engage in physical activity. However, numerous studies confirm that moderate exercise, preferably in nature, has positive effects on fatigue. Movement is even more effective against depression than medication. The important thing is not to do excessive exercise, but to do it in moderation and so that it does you good. Sport should not be used to distract oneself from unpleasant feelings. Excessive sport can in turn lead to burnout.

Multiple sclerosis: Regular movement can improve the chronic fatigue state that so many people with MS experience, according to studies. This includes forms of exercise such as Nordic walking, training on a bicycle ergometer, yoga or water aerobics. Strength exercises can also help. The important thing is not to overexert yourself, but to find the right amount of physical activity and rest afterward. Listen to your body!

 

PS: Of course, I research and check everything I write here as well as possible. Nevertheless, I am only human and make mistakes. In addition, I may draw completely different conclusions as someone else would. Simply because they fit my story. But every story is different.

Important: The content on this page is for informational purposes only and is not a substitute for talking to your doctor or other therapist. The content reflects my personal experiences, research and findings that have helped me and that I therefore want to share. However, in your personal case, completely different things may play a role and other things may help. Please talk to your doctor or therapist before making any decisions that affect your physical or mental health. Also important: I don't want to convince anyone of anything here. Rather, I want to point out possible ways that hopefully can help some people to improve or overcome their Fatigue or ME/CFS.

 

sources

Alex Howard: Decode your fatigue

Dan Neuffer: CFS Unravelled

McGregor NR et al: Post-Exertional Malaise Is Associated with Hypermetabolism, Hypoacetylation and Purine Metabolism Deregulation in ME/CFS Cases. Diagnostics 2019

Shukla SK: Changes in Gut and Plasma Microbiome following Exercise Challenge in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). PLOS One 2015

Melamed KH: Unexplained exertional intolerance associated with impaired systemic oxygen extraction. J Appl Physiol 2019

Singh I et al: Persistent Exertional Intolerance After COVID-19. Chest 2021

Miranda NA: Activity and Exercise Intolerance After Concussion: Identification and Management of Postural Orthostatic Tachycardia Syndrome. J Neurol Phys Ther 2018

Deutsche Hirnstiftung: Sport verbessert Fatiguesyndrom bei MS-Erkrankten. Online: https://hirnstiftung.org/2020/10/ms-fatigue-sport/

Deutsche Fatigue Gesellschaft: Körperliches Training. Online: https://deutsche-fatigue-gesellschaft.de/behandlung/koerperliches-training/

Razazian N et al: Exercising Impacts on Fatigue, Depression, and Paresthesia in Female Patients with Multiple Sclerosis. Med Sci Sports Exerc 2016

Cochrane: Exercise for depression. Online: https://www.cochrane.org/CD004366/DEPRESSN_exercise-for-depression

Naczenski LM et al: Systematic review of the association between physical activity and burnout. J Occup Health 2017