How Post Exertional Malaise can be helpful (yes, really!)

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I support and guide people who are experiencing fatigue for a variety of reasons. Some of those people have specific fatigue-relate health challenges such as ME/CFS and Long Covid. And although having fatigue for any reason is difficult, there are a few unique challenges for those who have been diagnosed with a fatigue-related illness – with one of the more frustrating being Post Exertional Malaise (also known as PEM).

Post Exertional Malaise describes a situation where someone has pushed their mind and body past its comfortable tolerance, but they don’t feel the knock-on symptomatic effects until a good while later. Sometimes 12 hours, for most people it’s more like 24 to 48 hours.

This is one of the most difficult elements of a fatigue challenge – the fact that you can’t even trust that if something feels ok at the time, then it WAS ok!

It can be very confusing – indeed, many people take a long time to even join the dots and realise that they’re experiencing PEM. They haven’t even heard the term before, let alone realise that it describes the unusual pattern they’re experiencing.

I know that my own slide into fatigue started much earlier than I’d previously thought. It was 2010 when things got so bad that I had to effectively pause my life. But in hindsight, I’d been experiencing Post Exertional Malaise for a year or more. I kept thinking I was ‘coming down with something’, because I’d start to feel poorly (“malaise”) and after a day or so of rest I’d feel much better and think I’d fought it off. But, thinking back, these malaise spells often happened a day or two after I’d done something fairly high energy (my first Zumba class is one that particularly stands out!).

Anyway, this blog is supposed to be helpful, not a deep dark explore into the horrible elements of fatigue! So let me explain…

One of the things I help my clients achieve, is to find ways to stop feeling so worried, scared and confused about their fatigue challenge. Finding ways to stop fearing and worrying about your symptoms is such an important step towards achieving more stability, and ultimately improving your level of health. There are a variety of areas that can help someone get to this place: pacing (aka energy management), dietary improvements, improving sleep, reducing stress, and mindset management.

Mindset management plays a particularly helpful part – helping someone move from a place of worry and fear, to one of hope and confidence is not only important, I’d suggest it’s vital if they’re to work towards getting back to where they want to be again.

And there’s a great mindset shift that can take place, when it comes to PEM!

You see, you can start to use it as a helpful tool. You can make it work for you, rather than against you.    

Everyone has what I call a ‘PEM pattern’. That is, they know what their typical time-delay is between doing something that pushed their system past it’s comfortable limit, and feeling the physical effects. The most common PEM patterns I see are 24 or 48 hours. But everyone has their own pattern, and once you know what yours is you can use it to help you.

Because once you get to a slightly steadier place, and you’re working on increasing your energy baseline, you can use PEM to keep you feeling confident that you’re increasing things at a rate that your system is comfortable with. If you up things and experience some PEM as a result, this is a sign that you’ve either increased things a little too soon, or by a little too much. But if you don’t experience any, then that’s a wonderful sign that your increase has gone well.

For example, if you’re experimenting with adding in a small walk every few days, and have a 24 hour PEM Pattern, if you don’t experience any PEM within 24 hours of your first walk, you can be pretty sure that this level is within your comfortable tolerance. If you want to be really confident of that, give it 48 hours to be on the safe side. And if you haven’t experienced any PEM by then, you can feel confident about going out for another short walk. And so on.

Of course, this benefit doesn’t really kick in until you’ve found that steadier place initially and feel ready to start to gently increase your activity levels (be it physical or cognitive) – but if you’re not at that stage yet, use this time wisely. Start to keep an eye out as to what your PEM Pattern is, because there’ll be a time slightly further down the line where this will be really helpful information to use.  

One last word on this – PEM isn’t foolproof! There can be a number of reasons we find ourselves feeling symptomatic: not having a great night’s sleep, hormones, not being adequately hydrated, changes in medications etc. If you experience PEM and you’re pretty sure you didn’t do anything to bring it on, it’s worth having a think about whether you’ve done anything differently recently, and use this as a helpful nudge to spot something that you might need to tighten up on a bit.

PEM is horrible, and it can feel so frustrating early on in your journey. But there’ll come a time when you can start to use it helpfully…so look for your PEM pattern and feel a little more hopeful that there’ll be a time in the future when all of this will become helpful.

For now, take care!

Pamela

P.S. My 1:1 coaching time is usually full, but if you’re struggling with frequent PEM and just can’t figure out how to get into that steadier place, there are other ways I can help you. My self-guided Pacing course costs £95 and shares my energy management method that’s helped hundreds of people get control over their fatigue-related symptoms. Additionally, the April intake of my Four Week Fatigue Rescue programme is now on sale – starting on 3rd April and priced at £240 it offers a complete package of help and guidance to navigate you to a place where you feel more confident about getting control over your symptoms again.