Post Exertional Malaise (PEM) – A survival Guide

This information originally appeared as a blog post, but I thought it was important enough to have it’s own page.

1. Acceptance

It’s important to accept your current capabilities.  When you have PEM you  feel awful, and can do less activity than usual.  If you try and ignore your body, push through and carry on as usual you will make the situation worse.

You get PEM when your mitochondria can’t provide enough energy to meet demand and switch to anaerobic mode.  It takes time for your body to process the waste products from this and produce more ATP so that you can function normally again (see Dr Myhill’s website if you want a detailed explanation of the cellular processes).  In the meantime, if you push you will be forcing your mitochondria into anaerobic mode again, it will take you longer to recover and you will feel worse because you will have even more lactic acid build up.  So, accept where you are, adjust your activity levels accordingly and be kind to yourself.

2. Cancel Everything

When you have PEM the kindest thing you can do for your body is allow it to recover, the way it will do this is via rest.  Have a look at what you’ve planned for the day and cancel all non-essential activities.  Depending on where you are on the recovery scale this will vary.   For example I used to have to arrange for someone else to take my kids to school, cook dinner, brush my hair etc. .  Now because a normal day is much more active I can still manage basic self care activities like having a shower and putting dinner in the slow cooker.  I cut back on activities like hanging out the washing or going to the supermarket and I do the school run on my electric bike without pedalling.  The level of activity you can manage is different for everyone, it’s really important to listen to your body and not try and do things that increase your symptoms.

3. Drink Water

Your body is struggling to get rid of toxins.  By drinking plenty of water you will help flush everything out.  For variety, or if you struggle to drink plain water, try hot water with a slice of lemon.

4. Eat Good Food

By good food I mean food that is easy to digest and will provide plenty of nutrients.  Some foods need more energy than others to digest.  Your body is low on energy, so the last thing you should be doing is eating foods that need energy to process them.  The same old advice applies here: plenty of vegetables, lean protein and healthy fats.  Avoid sugar and refined flour products, brown rice is a great option for a carbohydrate portion.  You need to make eating good food easy on bad days, so try and have some food in the freezer, or buy pre-prepared vegetables that you can eat with little or no preparation.  Bags of carrot batons and salad leaves are great options for no cook vegetables.

5. Meditation/Relaxation

All those toxins flowing through the body are a stress on your system.  Given that most people with ME/CFS have Adrenal Fatigue, it’s important to try and minimise your stress level.  Meditation or guided relaxation is a great way to do this.

6. Kind Self Talk

When you have PEM you feel awful and it’s easy to get caught up in negative thoughts.  Here’s a few I’ve experienced:

  • It’s all my fault, I was stupid to do …….(the activity that caused the PEM)
  • Why can’t I just pace properly?
  • I’ve ruined my recovery.
  • I’m always going to feel like this.
  • I’m never going to recover.

Actually none of these thoughts reflect the reality.  Here’s a more real version of events:

  • I didn’t mean to overdo things and get PEM, it was an accident
  • You have to “Bounce the Boundaries” in your recovery and try doing extra activities, otherwise you will never improve.  Sometimes these experiments will show you you’re not ready for that level of activity yet.  It’s all part of the process.
  • This is a temporary set back.
  • You don’t feel like this all the time, most of the time you feel better.
  • You will soon be back to how you used to feel and your recovery will continue.

In the first months of my illness I needed my husband to point out to me that my negative thoughts were incorrect.  Now, after all the practise I’ve had, I can usually quickly counteract them myself if they pop up, and they pop up a lot less than they used to.

7. Gratitude

A regular focus on things in your life you are grateful can really help you feel more positive about your situation.  I like to list 5 things I’m grateful for.  When I’m feeling low this is sometimes a stuggle, but I can always think of 5 eventually. They don’t have to be big things.  Here’s a few examples, but everyone’s list will be different.

  • I have a comfy bed to lie in
  • I am warm and dry  in my house
  • I have a husband who cares for me
  • I have plenty of food to eat.
  • I can see a tree out of my window

8. Distraction

When you are physically in pain, or feeling poisoned it easy to get focused on the horrible physical sensations.  A good way to counteract this tendency is to distract yourself.  Instead of focusing on the pain, brain fog, exhaustion etc. do something pleasant.  Obviously you are limited by your physical ability.  Here’s a few suggestions I use:

  • Watch a film (a feel good Rom. Com. or Comedy are best),
  • Listen to an audio book,
  • Lie in the sunshine,
  • Read a book,
  • Chat on Facebook – I generally can’t cope with too much face to face interaction when I’ve got PEM, but I find facebook is a great way to ease  social isolation

The Optimum Health Clinic suggest making a first aid kit for bad days.  This could include your favourite film, book, music, phone numbers of people who can cheer you up, quotations that you find helpful etc.  The idea is that if you put all this stuff together on a good day, then on a bad day you’ve got a box or resources which are going to help you.

9. Epsom Salt Baths

If you’re well enough for a bath, then an Epsom Salt Bath can really help PEM. Bathing in Epsom Salts can ease aching muscles, help your body’s detoxification process and lower stress levels.  Here’s a great post from  SCD lifestyle which explains the benefits and what to do in detail.  Don’t get too hung up on having the perfect bath though; it’s better to do it imperfectly than not do it at all.

These are my coping strategies.  Do you have any other ways to survive PEM? Please share in the comments below if you’ve got any helpful suggestions.

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