PEM (post exertional malaise), also known as PENE (post exertional neuroimmune exhaustion), is the key feature of myalgic encephalomyelitis, and differentiates it from similar or co-occurring conditions.
PEM/PENE is not simply “feeling tired” after doing an activity. It is an extreme increase in symptoms, & is generally a delayed reaction (usually by several days). It is also a prolonged state, & takes a long time to recover from (weeks & months rather than hours), and can even result in a permanent worsening of ME.
Here is my experience with PENE:
It hits 24-72 hours after ‘big’ activities (leaving the house, showering, appts), OR if I have seriously pushed my body too far, it can hit immediately after or during an activity.
This happened most recently when I had two days out with family in a row; on the second day I crashed within an hour of leaving the house with them. I lost the ability to react to my surroundings, couldn’t talk/respond, felt freezing cold, & needed immediate sleep. This is very typical of an immediate crash for me, although sometimes a migraine is involved.
Currently I am experiencing abysmal PEM/PENE from recent activities. Here is what it is like for me:
- I’m having a LOT of seizures, & am feeling ‘spacey’ & on the brink of a seizure constantly
- My exhaustion is unreal; I can barely move my limbs, can’t hold a drink, & am having to crawl to the stairlift to get to the bathroom
- Cognitive difficulty is extreme – I can’t focus, my words get jumbled & I talk jibberish, I can’t hold conversation
- Have lost my sense of taste
- Experienced temporary loss of the use of my legs – I couldn’t move them at all
- I’m craving carby food (big sign of relapse), so we’re getting takeaway 🍕 for the first time in weeks as I neeeeed it
Even though 85% of the last 4 days has been spent sleeping (as a result of pushing myself too far) I am –
- beyond exhausted
- desperately need sleep
- can’t think
- & currently my eyes are streaming
Life with ME everybody 🙄