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If you have ME/CFS or Long COVID, you may be familiar with the term post-exertional malaise (PEM), which refers to the worsening of symptoms after physical or mental activity that would not have caused a problem before illness. [1]Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023. PEM can last for days, weeks, or longer and can affect any aspect of your health, such as fatigue, pain, sleep, cognition, mood, and more. [2]ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. … Continue reading
What is Rolling PEM?
But did you know that there is another type of PEM that can be even more harmful? It’s called rolling PEM and it occurs when you don’t recover fully after each day or crash and the PEM accumulates gradually over time. [3]How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/19/2023. This means that you get progressively worse over months or years as you fail to recover completely from each incidence of overactivity.
Rolling PEM can be hard to recognize because it may not cause an immediate or noticeable crash. Instead, it may manifest as a gradual decline in your functional capacity, quality of life, and overall health. Rolling PEM can also make it harder for you to find your energy envelope – the range of activity that you can do without triggering PEM.
Compounded PEM is another term for rolling PEM, as it implies that the PEM is compounded or added up by each episode of exertion. Both terms describe the same phenomenon of delayed and prolonged PEM that can be hard to identify and manage.
Some factors that can contribute to rolling PEM are:
- Not knowing your energy limits or how much activity you can tolerate without triggering PEM
- Feeling pressured by yourself or others to do more than you can handle
- Having unpredictable symptoms that vary from day to day or hour to hour
- Having other medical conditions that require treatment or attention
- Experiencing stress, emotional distress, infections, allergies, weather changes, or other triggers that worsen your symptoms
So how can you avoid rolling PEM?
The key is to pace yourself and manage your energy wisely. Pacing is an approach that helps you keep all energy expenditures – physical, cognitive, and emotional – within limits that can be tolerated by your body. Pacing can help you minimize or prevent PEM by helping you recognize your energy limits and adjust your activities accordingly.
Here are some tips on how to pace yourself and break free from rolling PEM:
- Keep a daily diary of your symptoms and activities. [4]Managing Post-Exertional Malaise (PEM) in ME/CFS – Centers for Disease …. https://www.cdc.gov/me-cfs/pdfs/interagency/Managing-PEM_508.pdf Accessed 3/19/2023. This can help you identify your personal triggers and limits for physical and mental exertion. You may notice patterns such as how long it takes for PEM to start after an activity, how long it lasts, and what helps you recover.
- Plan ahead and prioritize your tasks. Break down larger tasks into smaller steps and spread them out over time. Schedule rest breaks before, during, and after activities. Avoid doing too much on good days or too little on bad days.
- Use tools such as heart rate monitors or activity trackers to monitor your exertion level. Some people with ME/CFS have a lowered anaerobic threshold, which means they enter into an energy deficit when their heart rate goes above a certain point. [5]Centers for Disease Control and Prevention (CDC). Managing Post‑Exertional Malaise (PEM) in ME/CFS. U.S. Department of Health and Human Services, 2021. … Continue reading Keeping your heart rate below this point can help you avoid overexertion and PEM.
- Listen to your body and respect its signals. If you feel tired, sore, dizzy, foggy, or any other symptom of PEM coming on, stop what you are doing and rest until you feel better. [6]Pacing | ME/CFS SA. https://mecfssa.org.au/resources/pacing Accessed 3/19/2023. Do not push yourself beyond your capacity or ignore warning signs.
- Familiarize yourself with the Workwell Foundation’s PEM Timecourse. The document summarizes the immediate, short-term and long- term PEM symptoms that may appear after physical activity.
- Seek professional guidance if possible. A rehabilitation specialist who understands ME/CFS may be able to help you design an individualized activity plan that suits your needs and goals.
Pacing may not be easy at first but it can become a habit with practice. By avoiding rolling PEM through pacing, you may be able to stabilize your symptoms, improve your well-being, and increase your function in the long term.
I’d love to hear from you. Please leave a comment below and tell me what you think about rolling PEM and how it affects your life.
For more insights on my own experience with rolling PEM and how I overcame it check out my other blog post.
References
| ↑1 | Symptoms of ME/CFS | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome …. https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html Accessed 3/19/2023. |
|---|---|
| ↑2 | ME Association. 2021. “Symptoms: Post‐Exertional Malaise (PEM).” ME Association. Last modified November 3, 2021. https://meassociation.org.uk/medical-matters/items/symptoms-post-exertional-malaise-pem/ . |
| ↑3 | How Hannah Finally, Finally Learned How to Pace – and How it Helped. https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/ Accessed 3/19/2023. |
| ↑4 | Managing Post-Exertional Malaise (PEM) in ME/CFS – Centers for Disease …. https://www.cdc.gov/me-cfs/pdfs/interagency/Managing-PEM_508.pdf Accessed 3/19/2023. |
| ↑5 | Centers for Disease Control and Prevention (CDC). Managing Post‑Exertional Malaise (PEM) in ME/CFS. U.S. Department of Health and Human Services, 2021. https://www.cdc.gov/me-cfs/pdfs/toolkit/Managing‑PEM_508.pdf. |
| ↑6 | Pacing | ME/CFS SA. https://mecfssa.org.au/resources/pacing Accessed 3/19/2023. |
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Thank you. Information on rolling PEM is new to me and explains some of the challenges I am struggling with.
Hi Kari,
thank you so much – I’m really glad the info on rolling PEM helped clarify some of what you’ve been going through. It took me a long time to recognize it in my own experience too.
I just published Part 2 of the blog, in case it’s helpful. It goes a bit deeper into what started shifting things for me. No pressure at all – just putting it out there if you feel up to reading more.
Wishing you steadiness and strength 💛
– Carol
Found this interesting article via Google. “For more insights on my own experience with rolling PEM and how I overcame it check out my other blog post.” – Maybe add the link to the post? I guess from the link list that maybe you are Hannah and this is the other post you refer to? https://www.healthrising.org/blog/2021/03/04/hannah-pacing-heart-rate-monitoring-chronic-fatigue-syndrome/?
Also would like to add one item to list of factors that contribute to rolling PEM: When you are a person living by yourself with no helpers, and your energy envelope decreases beyond the “watershed” of energy required for necessary daily activity minimum (like preparing food), it will become harder not to overexert, resulting in a rolling PEM – which is why it is so important to pace early to stay above that watershed.
Sorry about that. The post was under construction and not yet available. I’ve updated the post to include a link to a tentative post.
Great addition to the list of factors that contribute to rolling PEM.
a
Hi JR,
thank you for reading – and great point about the link! I just went ahead and added it to the post. Also, I wanted to let you know that I’ve finally published Part 2, which goes deeper into how I started breaking the cycle.
Appreciate you taking the time to comment!
– Carol
Will you ever write part ii or iii, do you think?
Part 2 is finally out. https://tickedoffcodess.com/how-i-got-out-of-rolling-pem-part-2/
Ich stelle fest, dass Rolling PEM bei mir schon lange stattfindet. Bisher dachte ich wochenlange PEM betrifft mich noch nicht, dachte nach 2 Tagen sei ich über den Berg.
Allerdings täuscht das, wenn man Schmerzmittel nimmt.
Aber man merkt, wenn man versucht sich etwas zu belasten, dass die Diskrepanz zwischen der Geringfügigkeit der Belastung (bzw. des Belastungsversuchs) und der Heftigkeit, mit der der Körper reagiert, noch absurder geworden ist. Man ist eben noch nicht über den Berg.
Vielen Dank für diese Warnung!
Liebe Christine,
oh ja – das kenne ich total. Ich dachte früher auch, nach ein, zwei besseren Tagen sei alles wieder okay. Aber Schmerzmittel und kleine Fortschritte können echt täuschen.
Diese extreme Reaktion auf kleinste Belastung war bei mir auch ein großes Zeichen, dass ich noch mitten im Rolling PEM war.
Ich finde es super, dass du das für dich so klar erkannt hast – das ist ein wichtiger Schritt. Ich wünsche dir ganz viel Kraft auf deinem Weg!
Liebe Grüße
Carol
Liebe Carol!
Vielen Dank für diesen interessanten Artikel. Ich habe erst gestern von „Rolling PEM“ erfahren und zwar aus Berichten über die gestrige ME/CFS-Konferenz in Berlin. Weißt du vielleicht etwas über Autoren oder Studien, die „Rolling PEM“ beschreiben? Ich frage aus einem bestimmten Grund: Ich habe Kfz-Hilfe beantragt, diese wurde mit Verweis auf eine Nutzung des ÖPNV abgelehnt. Die Nutzung des ÖPNV wäre vielleicht sehr gelegentlich möglich, aber eine ständige Nutzung wurde unweigerlich zu andauernden, sich kumulierenden Überlastungen führen. Wenn ich das sage, hat es leider weniger Gewicht als wenn es ein Forscher sagt.
Liebe Grüße
Irene
Liebe Irene,
vielen Dank, dass du das geteilt hast – es tut mir sehr leid zu hören, wie schwierig die Situation mit deinem Antrag ist. Es ist äußerst frustrierend, wenn die eigene Erfahrung nicht das gleiche Gewicht hat wie wissenschaftliche Belege – besonders bei einer so belastenden und oft missverstandenen Erkrankung.
Leider gibt es bislang kaum wissenschaftliche Literatur, die sich konkret mit „Rolling PEM“ beschäftigt. Die einzige mir bekannte Studie, die dem nahekommt, beschreibt eine:n Patient:in, die/der auch ein Jahr nach einem 2-tägigen kardiopulmonalen Belastungstest (CPET) noch nicht genesen war:
https://pmc.ncbi.nlm.nih.gov/articles/PMC10059925/
Das meiste, was derzeit zu finden ist, stammt von Betroffenen selbst und aus der ME/CFS-Community. Ich hoffe sehr, dass bald mehr Forschung folgt, die deine und ähnliche Erfahrungen besser sichtbar und nachvollziehbar macht.
Mit herzlichen Grüßen
Carol
Liebe Carol!
Vielen Dank für diesen interessanten Artikel. Ich habe erst gestern von „Rolling PEM“ erfahren und zwar aus Berichten über die gestrige ME/CFS-Konferenz in Berlin. Weißt du vielleicht etwas über Autoren oder Studien, die „Rolling PEM“ beschreiben? Ich frage aus einem bestimmten Grund: Ich habe Kfz-Hilfe beantragt, diese wurde mit Verweis auf eine Nutzung des ÖPNV abgelehnt. Die Nutzung des ÖPNV wäre vielleicht sehr gelegentlich möglich, aber eine ständige Nutzung wurde unweigerlich zu andauernden, sich kumulierenden Überlastungen führen. Wenn ich das sage, hat es leider weniger Gewicht als wenn es ein Forscher sagt.
Liebe Grüße
Irene