ME and Post-Exertional Malaise: “It is much more than fatigue and stiffness…”

November 18, 2020

Russell Fleming, Content Manager, ME Association

The following description of Post-Exertional Malaise was sent in to us by a supporter who wanted to remain anonymous.

Can you relate to it? What have been your experiences of Post-Exertional Malaise? Do you regard it as the characteristic symptom of ME/CFS? Join in with the discussion on the ME Association Facebook page.

Post Exertional Malaise or PEM, is much more than fatigue and stiffness. I would describe it as a worsening of all ME-related symptoms and it is caused by physical, cognitive, or emotional exertions.

It is unpredictable. I don’t always know what activities – or how long I might spend doing them – will cause PEM to occur. It can happen when reading or speaking, especially trying to respond to emails, and even from laughing or going to the toilet…

Photos taken from the Real ME campaign

What does PEM feel like to me?

  • It feels like my blood and bones have been sucked out of my body and I have lost all strength in my limbs. I’m unable to use my hands and arms to reposition myself to sit or raise myself up a bit more in bed.
  • It feels like my body has melted into a congealing pool of gunk and I can’t manage to reach for my hydrant bottle to drink water.
  • It feels like I’m wearing a suit of armour. My body is magnetized to the bed and I’m unable to move an inch.

“My bowels will empty at the onset of PEM. Whatever is in them turns to liquid and falls out. Face drops, eyes droop, the colour drains from my face…”

I experience migraine, dizziness, light-headedness, nausea, extreme cognitive dysfunction – an inability to speak, to form words or to think straight.

My carer might ask: “Would you like a cup of tea?” “We’ve run out of bin bags; do you have any more?” “When was the frozen meal in the fridge taken out of the freezer?”

And I would reply: “Blearrgon, flargh flugh, Ned shleep…!”

I wouldn’t be able to hold a drink let alone drink it, all I need to do is sleep and rest. What follows is then hypersomnia. This is an almost delirium-like state which feels like I’m going in and out of consciousness and my awareness is zoning in and out.

“I experience intense Flu-like symptoms – but without the snot e.g. muscular aches, weakness, shakes, headache, feeling very hot or very cold and feverish, etc.

“My body becomes even more hypersensitive – so much so that a light touch can hurt – and the intensity of all the other ME symptoms become acute…”

This usually happens 24 to 72 hours after the triggering event. It can come on almost immediately if I haven’t realised I’ve over-exerted myself. Or I might get some warning and be able to say coherently that I need to rest or sleep.

What helps me?

Rest or sleep. PEM can last a day or two to five days or even longer if the triggering exertion was prolonged or extreme (extreme for me that is).

I am currently in a longer period of PEM-relapse and have been for the last few months after I tied to respond to emails and had to recruit new carers.

I have a hypersensitivity to light, sound, smells, touch, chemicals, and taste. I will need very soft, bland foods when able, like a protein shake, smoothie, mashed sweet potatoes, banana, or a casserole.

Can you relate to this description? What have been your experiences of Post-Exertional Malaise? Do you regard it as the characteristic symptom of ME/CFS? Join in with the discussion on the ME Association Facebook page.

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