[POLL] How often do you experience Post-Exertional Malaise?

[jasperfw]

I was wondering how often you guys experience PEM, since I have seen quite varying reports on here.
It would be interestign to see if/how PEM % correlates with severity level, but I dont know how to incorporate this in a single poll.

 

[Blazer95]

I get pem so rarely nowadays because i know my exact limits and never or rarely overdue them. also the "aggressive resting" when i have done something exhausting helps limit the crashes.

what also helped me was getting a pulse watch and checking it aggressivly often. if i can manage to stay below 110 BPM the whole day i will not crash most likely, except there is a big emotional stress wich i avoid as good as possible.

also my supplements and my ssri citalopram seem to have "stabilized and baselined" me a bit. its not a cure but it straightens things out.

 

[BrightCandle]

Ever since I targetted no more than 80% of my estimated energy envelope and avoided all chemical exposure I have avoided PEM, its been about 6 months since my last episode and that was a relatively minor event since it only lasted a week. I just lived with the constant variance of it all now rather than PEM directly. Its an extremely limited existence but trajectory is overall improvement if I continue to avoid PEM.

 

[Wishful]

Your poll will probably show learned ability to avoid PEM triggers rather than how sensitive people are to PEM triggers.

I've been free of physically-induced PEM for many years. I'm not sure whether I've had cognitively-induced PEM, as I trained myself to avoid socializing.

 

[southwestforests]

PEM has increased through the years to the point I go to park to fly kites only rarely now (especially the 6 foot and bigger ones) because even standing around holding strings for an hour can wear me out.

( Have some additional editorial content at no extra charge -- even though Dad was Navy's first medical retirement with ME/CFS in early 1980s & I've had it since at least when diagnosed in spring of 2006, the above cause and effect still registers in my brain as absolutely absurd, can not possibly be real, except the going and doing concretely demonstrates the reality of it) (even grocery shopping gets cut short on occasion)

This year haven't been to our county seat farm burg's really nice pool and water park at all for fear of not being able to drive home after swimming any. Which is a real bummer because the water feels good.

Your poll will probably show learned ability to avoid PEM triggers rather than how sensitive people are to PEM triggers.

Bingo!

 

[Wishful]

for fear of not being able to drive home after swimming any.

One danger of ME that I haven't seen discussed is the possibility of an unexpected trigger causing brainfog or other impairment, resulting in an accident. I've certainly had unexpected impairment, occasionally quite severe. Surely this occurs with other diseases (narcolepsy?), so there should be some data for figuring out cost to society of this ME issue.

 

[SnappingTurtle]

Your poll will probably show learned ability to avoid PEM triggers rather than how sensitive people are to PEM triggers.

I agree. I have reduced frequency of PEM only because I try to pace (I am on year 6, if you count the 1 year before my official ME/CFS diagnosis). If I am not careful, or there are unavoidable circumstances (I estimate 25 to 50% of the time), I will definitely get PEM.

 

[heapsreal]

This year I have changed jobs and work very casually which has helped alot. I'm functioning at an 8 or 9 out of 10. I go to the gym regularly and train reasonably hard. I still get pem but it doesn't build up like it did when I had to keep working and no extra energy for the gym.

Now I'm feel quite good but I do notice a day or 2 after the gym I'm alot more lethargic but I'm able to sit at home and vegetate for a couple of days which helps recharge my batteries.

If I went back to work doing 32hrs a week as I was previously doing, I'd probably be vegetating every chance I could get. Now I try not to do things 2 days in a row.

 

[southwestforests]

Now I try not to do things 2 days in a row.

That sure sounds familiar.

 

[maddietod]

All of the posts above mirror my experience. I don't get PEM because I know my triggers and limitations.

 

[jasperfw]

All of the posts above mirror my experience. I don't get PEM because I know my triggers and limitations.

What is your severity level? Do you recieve appropiate medication?
Also @BrightCandle @Wishful

Thanks for your comments!

 

[southwestforests]

Okay folks, off to have breakfast, late, then head to the apartment laundry room to do 2 baskets of laundry, 3 loads.
Doesn't matter whether I do 1 load or 5 loads, there WILL be PEM.
So,
might as well do enough at one time to "make the PEM worth it".

 

[Wishful]

My severity level has been mild. I have non-standard ME (is there really a standard form?), so my strength and endurance was unaffected. I didn't get prescribed any useful medication for PEM, but I discovered that cumin (cuminum cyminum) blocked my physically-induced PEM 100%, and after ~2 years, I was cured of that (search for threads about cumin and PEM). So, it is possible to find a treatment for PEM and even cure it. You just have to get really lucky.

 

[Wishful]

So,
might as well do enough at one time to "make the PEM worth it".

That works ... unless your PEM severity and duration depends on the magnitude and duration of the exertion. That might be another good PEM poll. I can't recall a discussion about whether PEM is "dose dependent".

 

[southwestforests]

unless your PEM severity and duration depends on the magnitude and duration of the exertion

Sometimes the PEM observably does depend on exertion level & sometimes it seems irrationally out of proportion.

For instance ... dining table has looked like that for about a decade and a half because if the paints were put away, getting out the needed ones can use up all the energy that was available to sit and do 15 minutes of painting on model parts.
(picture is from February this year & those little train and airplane and boat and spaceship and game people, and NASA rockets, still aren't finished)

So ... the paints get left out all the time so that when able I can just go and sit and paint for a bit.
There is a bit more paint in a box under the table.

Interestingly, the smaller the part being painted, the more rapidly the required concentration wears me out.

Why the dining table? 2 things: the 3 light bulb ceiling fan & that the vast majority of those paints are water based, or at least water soluble when still wet, acrylic, so, the 'paint thinner' is delivered to my kitchen faucet by the city utilities.

(hilarious to watch people's initial expression when in conversations about city water quality I say, "Yeah, our town gets its water from the river & it can taste like dirt when the river is either high or low, and sometimes we get paint thinner from the faucets.")
(yes the palette, even with a bunch of commercially available paint hues, I still enjoy mixing exactly the right hue desired)

 

[maddietod]

What is your severity level? Do you recieve appropiate medication?

I don't take any medications. I have explored medication for insomnia, but it either keeps me awake all night (eg Ambien) or makes me walk into walls (Klonopin).

I don't know how to do severity levels. I don't drive because my reaction times are too slow for city living, and that leaves me mostly housebound because I don't have the stamina for long walks. Everything depends on energy, and everything has declined. On some parts of the scales I'm mild, and on others I'm right in the middle of moderate.

 

[maddietod]

Okay folks, off to have breakfast, late, then head to the apartment laundry room to do 2 baskets of laundry, 3 loads.... there WILL be PEM.

My (rental) laundry setup is at the far end of an unfinished basement that sheds dirt. The stairs down are twisty and a bit terrifying. I hate doing laundry. I started hand washing everything smallish or lightweight in the kitchen sink, and spinning it dry in a machine I keep in the adjacent bathroom. Then I only go into the basement to wash things like jeans. I hang everything to dry all around the upstairs.

The handwashing + short walk is easier for me than going up and down those stairs and walking the length of the townhouse multiple times. Also I don't mind this, so I do small amounts more frequently rather than letting it pile up.

 

[southwestforests]

so I do small amounts more frequently rather than letting it pile up.

That makes sense.
And I would like if my circumstances allowed similar.

I hang everything to dry all around the upstairs.

And that is where the cold water wash, hang to dry, tropical shirts and cargo pants are as we speak.
this entire apartment is up a flight of stairs and things are hung over all three door frames which are not closets or the front door.

The laundry which did use a dryer will wait in the basket to be folded and put away tomorrow.
Maybe tonight but usually tomorrow.

Tangential anecdote:
Instruction tags on shirts and pants say they can be tumble dry low, but even though I'm not at all built like an Olympic weightlifter these shirts tight get across the shoulders even when dried on low or delicate and the pants get too tight in the thighs. Which was even the case a decade ago when I weighed 50 pounds less.

At just shy of 5ft 11in tall and 200 pounds, I have very few items of clothing which could be classified as smallish and lightweight.

 

[maddietod]

The laundry which did use a dryer will wait in the basket to be folded and put away tomorrow.

To circle back around to avoiding PEM, in winter when I have to do big loads in the basement, laundry takes 3 days. One to sort, one to wash/dry/hang, and one to put away.

 

[BrightCandle]

What is your severity level? Do you recieve appropiate medication?
Also @BrightCandle @Wishful

Severe, Funcap55 2.1-2.4 over past year.

I receive no medical intervention at all. I do take experimental medication at times based on studies and availability but my stack is quite small these days consisting only of necessary gut motility and magnesium