PEM: A thread for sharing your experience of post-exertional malaise

I honestly have been hovering between these three ever since I got ME.

I think what I have to say about PEM that is unusual. Is that it doesn’t really follow a pattern of, nothing for 24 hours, like it’s often described, then a sudden worsening of everything.

What I usually get, atleast when the trigger is an acute instance of overexertion and not long term triggers, is that right after the overexertion, my body gets wired, and some symptoms get worse. The most notable one that always happens in this case is a feeling of overheating, to the point while family members are shivering in sweaters I can be semi naked with a fan on. The symptom exacerbation continues over the next day, next day I usually wake up with a migraine etc. This wired feeling and symptom exacerbation can last anywhere from hours to months, and one key feature is I get less sleep than usual.

But once it dies down, which seems to happen when I stop feeding it and with time, is when my functioning actually declines, that’s when the exhaustion sets in, and I start to be able to do less and less until I stabilise at a level of functioning lower than before, this is also the period where I will sleep crazy amounts, like 16 hours. Sometimes with time the functioning goes back up, often the worsening is permanent, especially if I retrigger PEM during the worsening, (I like to call that Recursive PEM).

I don’t remember what my FUNCAP score was, but I was a little suprised to see it was worse than every single person who participated in the Norweigan study, atleast last time I took it.

As a very severe person, since I don’t leave my bed, nearly all my PEM triggers are either cognitive overexertion or too much stimulus. Things like sounds, lights, movements, even feeling the presence of another human can sometimes overwhelm my brain and clearly give me PEM.

My symptoms nearly always get better by the time the PEM episode ends, however, sometimes the PEM episode triggers new symptoms I have never seen before. My functioning often stays permanently worse.

 

Thanks for posting this, @Trish, it's a good idea. I'll post my first thoughts here, then edit it when other folk remind me of things I forgot to mention!

Severity
Moderate, wheelchair user, usually able to leave the house for 2 – 3 hours a couple of times a week.

• Edited to add: FUNCAP scores are very varied. I rate as severe on basic functions and walking, moderate/severe on being upright, mild on concentration, and moderate on everything else.

Triggers
Mostly physical activity or sensory overload. I'm not aware of having triggered it by cognitive activity, but in someone who's not bed bound it can be hard to tell; I've always done some physical activity during the day as well.

Identifying the trigger
I almost always know.

Delay
24 hours, though it's not quite as straightforward as that. The symptoms start the next day, but are usually worse on the second day. In a sense, I get both a 24-hour and a 48-hour delay.

Normal symptoms
Everything in the ICC diagnostic criteria except headache, non-muscular pain, and genitourinary issues.

PEM symptoms
The most dominant symptom on the first day is feeling ill, as if I have a virus. Swollen throat glands, sore throat, headache, runny nose, nausea, IBS, alternate shivering/sweating, urinary frequency, and body-wide pain. I don't always feel fatigued on the first day, I'm sometimes still 'wired' and will have had little or no sleep the previous night.

The second day is dominated by heavy fatigue, aching all over, burning pain in my legs, greatly reduced physical and cognitive capacity, reduced sensory tolerance, low mood, worse OI symptoms, and difficulty with sleep onset and maintenance. The 'flu-like symptoms have usually faded but not gone away.

For me, the symptoms on the first day are so distinct from those of subsequent days that in my own mind I refer to them as the "Day 1" and "Day 2+" patterns.

PEM duration
When I was working I often got severe PEM, but that's rarer nowadays because I have more control over my schedule and activities. The average duration now is two to three days.

PEM severity
I'd compare it with a viral infection bad enough to keep someone off work. Feeling very unwell and needing to lie down some of the time, but not in bed for the whole day. (I get much more pain lying down than I do sitting in a chair, and it's sometimes bad enough that sitting up is the lesser of the two evils.)

PEM recovery
If the PEM isn't severe, I usually feel back to normal by day 3 or 4.

If I've been away from home overnight, recovery takes longer. After a week-long trip it can take a couple of months to get back to where I started, but I usually recover all my previous function.

Severe PEM (which I've often referred to as a relapse) can last two to three months in the "Day 1" phase, six months in the "Day 2+" phase, followed by another 12 months where I'm functioning again but with reduced capacity. I haven't had PEM this severe since I took early retirement.

PEM – distinct episodes?
Yes, always. Even the most severe PEM has something of a recognisable pattern.

PEM frequency
As often as I trigger it. I rarely go a week without at least some PEM.

PEM pattern
"fairly stable and able to pace, but life demands lead to quite frequent PEM" is the most accurate for me.

The experience has changed, but mostly due to external factors. I can control my activity more now than ever before, so I'm less at risk of severe PEM.

PEM – feels like?
That would change hourly!

I've used phrases such as steamrollered, spent the night in a tumble dryer, fallen down the stairs, etc, but for me one of the big features of PEM is the rapidly cycling symptoms. That's exhausting in itself.

 

Severity
Mostly housebound. Most of the day spent lying down. I mainly stand up to prepare food, use the bathroom, and shower. I leave the house for essentials, mainly groceries (usually curbside pickup) and medical appointments.

Triggers
Physical activity (e.g. walking or being upright too long) or cognitive activity (too much reading or computer focus). I can usually identify the trigger.

Delay
Up to around 48 hours sometimes. Usually gradually increases to a peak over hours or a day or two.

Symptoms
Always: fatigue, brain fog, anxiety (including social anxiety), sometimes insomnia.

With PEM, all of these increase. Too much reading triggers a headache, which is a sign I might get other symptoms. Sometimes a mild sore throat appears after physical (delayed) or cognitive exertion (immediate, before other symptoms, but it may only be "immediate" because I'm usually focusing for many hours before it starts to hurt).

Often, but not always, I'll have much more trouble getting to sleep or staying asleep the night after exertion and sometimes the following nights.

Food cravings increase (especially for potato chips) during PEM, but it's unclear if this is a direct symptom, or more because food is a comfort when anxiety is really bad or because willpower to resist cravings is decreased when I'm very anxious/mentally tired.

PEM from cognitive exertion includes physical fatigue, and vice versa.

How long does PEM last?
About four days on average. I never recovered to baseline after one particularly physically demanding week of work, but I usually return to somewhere around previous baseline, though it feels as if the baseline is minutely decreasing every time which compounds to a noticeable decrease in function over time.

Does your PEM occur in distinct identifiable episodes?
Yes, if the exertion is great enough. Otherwise, it feels like my symptoms ebb and flow through the days depending on how much recent exertion I've done.

How often do you get PEM?
In the sense that I'm always pushing my boundaries by reading as much as I am comfortable with, PEM is constant to some degree, and it might be that I would have somewhat decreased symptoms if I was to abstain from most activity (though I'm very restless too, so that's not easy).

In terms of distinct episodes, maybe once every two or so weeks.

Has your PEM experience changed over the years?
Lower threshold to cause PEM compared to early years.

I want to note that it is not as clear-cut as I may have presented it. Sometimes it feels like I don't worsen at all after exertion that would normally cause PEM. It's a very amorphous, unpredictable phenomenon.

One thing about my PEM that is very predictable is that I know if I were to try to increase my activity over a prolonged period (as opposed to something like a one-off bike ride, and I instead, for example, start to take a mile walk every other day), I would get worse and worse over the following several days/weeks, and the exercise will get harder and harder due to physical fatigue. And the anxiety (which is mostly just an "on-edge" feeling, but can latch onto random things to worry about) will get more and more unbearable. I've tried doing it many times, before and after knowing what ME/CFS is, with the same results every time.

How does PEM feel?
It feels like my body has a built in mechanism to prevent me from doing exertion. As if exertion unconsciously triggers a danger signal, which results in a negative feedback system increasing physical fatigue, brain fog, and anxiety (social anxiety is a major part of this, so I want to interact with people less too).

 

Thank you, @forestglip !!
Severity
Bedridden. Can use toilet and eat lying down. Would not survive without my caretakers.
Edit: FUNCAP somewhere below 2.

Triggers
Anything. Physical is worse than mental or emotional.

Identifying the trigger
Quite easy, mostly because my days are very standardized. Deviations are easy to spot.

Delay
Anything from instant to 72 hrs delay.
Have experienced several major crashes from repeated PEM.

Normal symptoms
Most of the symptoms of the Canada Criteria.

PEM symptoms
All symptoms get worse, especially fatigue, pain, brain fog, muscle weakness and heat intolerance. I feel very sick. Emotions are a lot less stable a negative.

PEM duration
Usually 3-10 days. Have experienced 3 months.

PEM severity
Symptoms go from 3/10 to at least 8/10. 10 is the worst I’ve ever experienced, so 3/10 is a lot higher than it seems from the number.

PEM recovery
Usually very gradual.

PEM – distinct episodes?
Too many to count. Have been almost to speak or move for weeks. Could do it with great difficulty and it caused symptoms to get worse.

PEM frequency
Completely dependent on schedule. I get enough help to avoid regular PEM caused by things I have to do to survive. Although it means to not be human.

PEM pattern
Depends on schedule.

PEM – feels like?
Like the worst illness I’ve ever had, multiplied with 100. Any exertion requires immense amounts of effort - my body and brain are in an ‘inactive’ state.

It’s so much worse than being at ~6.000 meters above sea level, or having been on a week-long 230 km skiing trip. I would not be able to explain it to myself from before I got sick.

PEM is also scary, because you don’t know if it’s going to get worse or how long it will last. I’m at a point where worsening will require substantial adaptation from my caretakers.

 

I might be a bit out of topic but I want to share that, although my fatigue only gets worse with time, a few years ago I stopped experiencing PEM, which is great (is there someone like me?). Otherwise, when I used to experience PEM, it started about 1 to 2 hours after physical or cognitive exertion. It made me almost completely unfunctional with severe fatigue and brain fog. It used to continue about a week, sometimes a bit more, after which I returned back to "normal". "Normal" means I still experienced fatigue but not so intense.

 

@Creekside ?

 

Severity: 2.1 or 2.0 on FUNCAP. Most of day resting with feet up, can only leave house occasionally with a helper. Mostly managing to stick to a strict pacing routine (am lucky to have various kinds of help with this) and not getting PEM very often.

Much more likely to have a PEM episode from an accumulation of minor increases in activity than from one big overexertion preceded and followed by rest.

PEM feels like: being drunk and hungover and coming down with a virus all at the same time, having run a marathon the day before, and now being required to sit a Maths A-level in an airless room with the questions in Russian.

How long does PEM last? These days, episodes are fairly short - 18-72 hrs - providing I can stay in bed and not talk more than a bare minimum. They have quite a clear start and end. Thinking back to times when I couldn't pace because of a lot of difficult family stuff going on, it was just a swamp of PEM for weeks or months, sometimes a bit better or worse but never entirely losing that feeling of having sandbags on my limbs and lentil soup for brains.

 

What is your current severity? My mind wants to say mild but I think I fit better as moderate. I am doing very well pacing so it makes what I do do feel less punishing.
(still awaiting official diagnosis. Symptoms for nearing 2 years)


What triggers PEM?
Physical activities: walking, stairs, standing (don't do anything else).
Mental: strong emotions, intense concentration.
Other: Dysautonomia symptoms such as fast heart rate and stress responses. Interactions with people like detailed or long conversations. Hormones.

Can you usually identify the trigger? Yes.

What kind of delay before PEM, if any?
Very mixed on whether I am feeling mild or moderate. I used to be able to work a six hour day then collapse at home and recover on the weekend with maybe once a month taking longer than the weekend to recover.

Now my morning activities (bath, eat, sit, watch tv, maybe a load of laundry or 5 minutes of dishes) means I need to lay down by 2pm for a couple hours before making supper and watching tv.

Doing anything extra means PEM starts as soon asy body relaxes. Depending on what I did ot could be a couple hours or several days with each day improving a bit. I no longer ever push it to see what will happen.


What are your normal symptoms?
I also have hashimoto's and dysautonomia so some of the symptoms are hard to pick apart as what is cfs only. The PEM is the thing the most distinctly not fitting with the others (predates my dysautonomia).

Fatigue, PEM, no endurance my muscles burn very fast, shaky muscles sometimes, getting very sleepy in bouts, I don't know if feeling like you can do something but then quickly realizing you can't is a symptom. Maybe sleep wakings, not confident on what to attribute that to.


What are your PEM symptoms?
Start to feel heavy, like my body is demanding to lay down to rest my muscles, get incredibly agitated like I want everything to stop, muscles burn, yawning, tiredness, fatigue, woozy head, sometimes foggy hearing, brain fog, muscle weakness.


How long does PEM last?
Varies a lot based on level of wellness and activities. There are no days with none but often the PEM lasts only that day thanks to strict pacing.

I have had PEM last from 2 hours to 2 weeks more commonly and once 2 months.


How disabling is PEM?
I don't know how to answer this. I could do something in a crisis but would usually feel like doing something while dead tired woken on the middle of the night from a deep sleep?


Do you return to baseline after PEM?
Usually, but not since the 2 month episode.


Does your PEM occur in distinct identifiable episodes?
Usually yes. But sometimes I have it mild and spend a couple days wondering why I am so tired before I figure it out.


How often do you get PEM?
Daily in small episodes. Every other week 1-2 days long. I no longer do things that cause other episodes.


What kind of pattern does your PEM follow?
I feel like my battery is draining faster than it should, then I need whatever length of rest (2 hours, 2 days), then followed by feeling more than usual fatigue for 2+ days before it's gone.


How has PEM or ME/CFS severity changed over time?
It was initially very consistent but has been more difficult since also getting dysautonomia. I find dysautonomia symptoms very triggering for PEM.


What does PEM feel like?
Feels like a body that doesn't make sense. I could do a lot if it wasn't there and that sticks in my mind. It's like there is a fuse that has been tripped somewhere in me and I don't know where it is to turn it back on. I feel like some of my batteries are missing.


Edited to add:
My throat turns sore every evening, like the start of a virus, but entirely gone every morning. I have never known what to attribute that to.

 

Yay, I'm not the only one who managed to cure my PEM. For me it took 2.5 years of taking cumin (cuminum cyminum) every 3 days (which blocked my physically-triggered PEM 100%, but not my cognitively-triggered). The difference is that my physically-triggered PEM had a 24 hr delay, while cognitive had a shorter (<1 hr) and more variable delay, and my PEM didn't last over a day.

 

What is your current severity?
moderate

What triggers PEM?
going over my energy threshold

Can you usually identify the trigger?
yes

What kind of delay before PEM, if any?
12-14hours

What are your normal symptoms?
OI I don't have many symptoms except reactivating viral infections that can last for months, sometimes a few years.

What are your PEM symptoms?
weakness, ataxia, chest pressure, dehydration, shakiness, loss of appetite, speech problems, unable to process or retain information, slurring *symptoms I don't have are tiredness or fatigue, my sleep is fine

How long does PEM last?
3-4 days in general, but it depends on how much I went over which I totally avoid

How disabling is PEM?
full stop need to stay lying down and avoid cognitive exertion until it passes

Do you return to baseline after PEM?
yes

Does your PEM occur in distinct identifiable episodes?
yes for 27 years

How often do you get PEM?
I prevent it by staying within my energy boundary, haven't had delayed PEM in years because I limit my activities and get adequate rest in between activities.

What kind of pattern does your PEM follow?
starts with sudden weakness and a feeling that is hard to explain

How has PEM or ME/CFS severity changed over time?
My cognitive issues have worsened over time, but my physical energy remains about the same except for the addition of OI which makes it more disabling

What does PEM feel like?
scary

 

Just want to say this thread is helpful as it makes me look at myself differently and wonder stuff

 

I've still got to post on this thread. It could take another week yet. I'll delete this post when I am able to post my experience.

 

What is your current severity?

I'm mostly housebound and spend a large part of each day lying down. I have the energy to prepare and cook simple meals but can do very little 'housework'. I have the energy to wash my hair once a month or so and have a bath once a fortnight.

What triggers PEM?

Any physical or mental effort that goes beyond my usual activities. Any emotional distress.

Can you usually identify the trigger?

Usually
What kind of delay before PEM, if any?

Variable, but most often 24 hours
What are your normal symptoms?

Difficulty with mental focus and memory. Breathlessness on walking. An overwhelming need to lie down due to exhaustion.
What are your PEM symptoms?

A raised temperature, headache, sore throat, pains in shoulder and legs, more difficulty thinking than normal.
How long does PEM last?

Variable. Usually between three days and a week.
How disabling is PEM?

Very.
Do you return to baseline after PEM?

Usually. However it is hard to distinguish between a viral infection and PEM as the symptoms are identical, and after one apparent viral infection in 2020 my 'baseline' permanently declined and I became housebound and for two years virtually bed bound. I do not know if this worsening was in fact triggered by a viral infection or a severe case of PEM following the unaccustomed effort of going to a hospital appointment.

Does your PEM occur in distinct identifiable episodes?

Usually, but not invariably.
How often do you get PEM?

Once every month or so
What kind of pattern does your PEM follow?

A flare up followed by two to three days intense rest leading to a return to baseline.

How has PEM or ME/CFS severity changed over time?

Both have worsened
What does PEM feel like?

Flu

 

Me too