PENE (post exertional neuroimmune exhaustion), or PEM (post exertional malaise), is probably THE most crucial symptom of myalgic encephalomyelitis.
PENE/PEM is the symptom that sets ME apart from similar conditions. Whilst it is very common for chronically ill folks with a variety of conditions to experience fatigue after activities, it is extremely different with ME, & in particular moderate or severe ME. With ME, even a small amount of activity (such as showering) causes a huge spike in symptoms that can last days, weeks, or months.
Symptoms during a crash include – exhaustion (often so intense you’re left bedbound – frequently unable to be around light, noise, often unable to speak); unrefreshing sleep (to the point where you wake up more exhausted than you would ever imagined feeling as a healthy bodied human); light sensitivity that means you can’t be around any light; migraines; seizures; body wide pain leaving you in agony.
The extent & duration of symptoms as a result of minimal activity, is what sets ME apart from having simply overdone it with similar conditions.
It’s easy to brush PENE/PEM off as no big deal, but in truth it’s extremely dangerous. Not only are the symptoms incredibly awful, but there’s a very real chance if you repeatedly push yourself too far, that your ME will permanently worsen. And yes, that is terrifying!
I am a cautionary tale, demonstrating this perfectly ~
I exercised heavily throughout my whole life, averaging 1-3hrs exercise daily. When I first began showing symptoms of mild ME in late 2015, I didn’t have a clue what was happening, so I continued exercising as normal.
My health declined at a rapid rate, to the point where I had severe light intolerance, experienced daily headache, severe neck pain, frequent migraines, & periods of being so exhausted I couldn’t open my eyes.
In early 2017 I began trying to get help for my seizures; I still had no idea about ME. I was having to live in total darkness due to the extent of my light sensitivity; I was in severe pain 24/7, having 20-30 seizures everyday, exhausted 24/7 (anytime I wasn’t out the house, I was bedbound) & frequently complained of “not being able to breathe” (air hunger due to POTS).
The NHS blamed all symptoms on my mental health & advised me to continue pushing myself to exercise. At this point I was doing 1-2hrs exercise a day, having constant seizures & brain fog so severe I couldn’t hold a conversation, & at home I was spending all my time in bed in agony. I couldn’t be around any light; we had blackout curtains up on the windows & our TV had to be dimmed alongside me wearing ski goggles.
As I continued to force myself to exercise despite crippling exhaustion & constant pain, I became sicker faster than ever. By February 2018 I was having to use a walker outdoors, & by April I became a wheelchair user.
Fast forward to April 2019 & I am still very sick. I’m pretty much bedbound, but I am able to go out the house a few times a week in my wheelchair. My seizures are drastically reduced (averaging 10-15 a day from 20-30) & if we plan my activities so I don’t overdo it, I can usually avoid the worst of worst symptoms.
The extent of fallout you get from doing activities (PENE/PEM) is unique to ME, & something every sufferer needs to try balance. If it hadn’t been for my OT appt being sprung on us this week (& having to go out to fill/print out forms the day before as a result), I’d have handled this week perfectly – the token system works! – but because we had a surprise appt & decided to go through with it, I’m now in a world of pain & scared I’ve damaged myself further 😕
The token system we use to prevent my ME worsening
Today is day 3 after the OT appt. I’m in the worst crash of this year. This evening my heart rate increased by 106bpm when I went from lying to standing.
My ‘fatigue’ is so bad that I crashed earlier & was unable to move/open my eyes/speak for over an hour. I’ve had two migraines, my entire body is screaming in pain, my joints are loose & my muscles weak.
All because I ‘overdid it’; & I only overdid it thanks to a text alert system failing (meaning I found out about an appt 2 days in advance!) 🙄
This is the activity that resulted in one of my worst crashes:
Saturday: 40 minute dog walk in my wheelchair, no self propelling
Sunday: 50 minute dog walk in my wheelchair, minimal self propelling
Monday: discovered I had an OT appt on Wednesday that I should have been told about last week. Had to go out for 2.5 hours; travelled to the town over via bus, to fill firms in & print them out at the library. No self propelling; severe symptoms all day.
Tuesday: rest day. Extreme symptoms.
Wednesday: 30min occupational therapist appt which involved having to go upstairs. 30min walk out the house in my wheelchair. Extreme crash, + migraine.
Thursday: extreme crash (huge increase in exhaustion, seizures, pain), migraine
Friday: extreme crash (huge increase in exhaustion, seizures, pain).
Idk when this crash will be over. I’m so bored. My donated, recently repaired, freewheel is itching to be used too – it’s killing me!!
Also the stress, exhaustion & insomnia has triggered hypomania too!
Fun times 🙃