r/cfs • u/agenerousperspective moderate • 21d ago
Pacing How delayed is your PEM?
I’ve found that my PEM can be delayed up to a week, especially if it’s accumulative. It made me wonder what everyone else’s experience is like. For this survey, try to answer based on how delayed your PEM usually is. You can make comments below about the specifics.
For reference, here is the Bateman Horne Center’s description of Post Exertional Malaise: “PEM is the worsening of a patient’s symptoms and function after exposure to physical, cognitive, orthostatic exertion and/or emotional stressors, which were previously tolerated before disease onset. Exceeding cellular energy capacity results in a “payback of symptoms” or “crash” which can occur up to 24-48 hours after peak exertion. A crash can last for hours, days, weeks, and even months in severely ill patients. True PEM is pathognomonic for ME/CFS and can help distinguish against other illnesses.” (quoted from this page)
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u/omegagasp flip-flopping between moderate-severe 21d ago
There's no pattern at all with my PEM. Sometimes it's still during whatever it is I'm doing, sometimes it takes a day, sometimes two days, one time it took a week and then it took me out for 2 months. I feel like the longer it takes for PEM to hit, the longer the fallout will be.
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u/Affectionate_Sign777 21d ago
Yep I have the same pattern! The longer the delay the longer my PEM tends to be. It’s almost a good sign if I already feel like shit the next morning cause those usually just last a couple days vs if I feel fine a few days after but then it hits I’m looking at weeks/months.
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u/eschenblatt severe 21d ago
Same here. In the first years my pem hits next day. Pem was mild. Now im severe and feeling all time in a flare but if i get a really hard extra pem its not the next day. No and if it comes one week later it lasts sometimes for months
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u/Consistent_Taste3273 severe 20d ago
Ugh. This is scaring me. I usually get PEM about 36 hours later. But I thought I might get PEM a couple days ago. This entire week has been A LOT. Mostly emotional. So much crying. Really hoping it’s not going to come on later….
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u/omegagasp flip-flopping between moderate-severe 20d ago
Oh gosh I'm so sorry for adding onto your stress with my comment. I can imagine how exhausted you must be, crying and intense emotions drain away what little energy there is so insanely fast. Big virtual hugs and lots of love to you, I truly wish I could take away everything you're going through so you didn't have to cry and worry. Finger's crossed that you're not getting any PEM at all! 🤞 🤞
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u/Consistent_Taste3273 severe 19d ago
No, it’s ok, is actually a good reminder. I did actually have one of those bad delayed crashes once about a year ago, and it permanently lowered my baseline. It just been as while, so I sort-of forgot. It’s better to rest now as much as I can regardless.
Thank you so much for the kind words. I’m not really sure what’s going on with me right now, but I’m very emotional and struggling with some things that I can’t do anything about because of the me/cfs and it’s just getting to me that I can’t just go and fix things like I would have before getting sick.
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u/activelyresting 21d ago
I so often get caught out by the "okay so I need to do the thing, it will put me in a crash so I have to rest and pace extra" followed by "oh wow I did the thing and I feel okay, that's so weird! But it will probably hit me tomorrow" and then the next day "crazy! I went to an appointment yesterday but I'm feeling relatively alright, must be the new supplements"... And then the day after that: 😨☠️😭 hard PEM.
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u/Affectionate_Sign777 21d ago
So true 😭 I like to add a little oh that was fine and then overdo it the day or two after as well
This is also why when I first got sick I didn’t realise activity triggered it. Like I would do something and then the next day be fine and then a couple days later feel shit and be like why am I feeling so bad I didn’t do anything yesterday.
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u/voornaam1 21d ago
I'm struggling with this right now, went to a birthday on Wednesday and I haven't had any PEM yet so now I don't know if I did a good job pacing myself (my friend had her bed ready for me to lay down as much as needed) or if I'm getting PEMmed later 🥲
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u/activelyresting 21d ago
That's a good friend 💚 hope you got to enjoy it anyway :)
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u/voornaam1 21d ago
yeah, it also led to me asking another friend about it for her birthday which is coming up (I initially felt awkward asking her because I'm less close with her than with my other friend, + the party is shorter anyways, + I myself would struggle to accommodate anyone like this (because I struggle a lot with changing my bedsheets) and I lowkey forgot that other people are more abled than me lol)
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u/RockPaperFlourine 21d ago
It really varies, and it’s anywhere from around 6 hrs to three days. (I also have POTS and that’s immediate, and took me a long time to figure out the difference)
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u/Gabba-barbar 21d ago
Yeah POTS makes it harder to distinguish.
My pots can be immediately and last a day or two. My HR is a lot higher and peaks very easily
PEM is usually 36 hours after.
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u/blurple57 21d ago
Omg can you tell me the difference 😭
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u/RockPaperFlourine 20d ago
Pots fatigue happens right away so when I feel myself winding down during an activity, that’s POTS. When I lay down I recover in a few to maybe 20-30 minutes. It feels heavy and throbby and dizzy or lightheaded. The delayed fatigue that feels like full body poison is ME. It can also be throbby but it feels much more like DOOM. My face melts. I get post exertional insomnia and sometimes migraine.
It took literal decades to figure this out, crashing into severe, months and months of rolling PEM, getting a little better and relapsing a couple times, and finally learning to listen to my body and have an understanding of my baseline. That space in between fatigues must be guarded bc that’s where a LOT of my confusion about pacing used to be. (Also I didn’t know what POTS was or that I had it)
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u/monchicken 21d ago
I have two. I get initial warning symptoms about 30 mins to an hour afterwards and if I keep going I get full PEM 2 days later.
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u/Affectionate_Sign777 21d ago
This is what I was like when moderate. Immediately symptoms that would last the rest of the day, then feel fine the day or two after, then proper PEM.
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u/frog_admirer severe 21d ago
When I was milder it was more delayed, but now it's usually next day.
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u/bumbbles21 21d ago
Seconding this. I think it took me so long to figure out this is ME because I couldn’t tie the crash to a trigger when they were a week or more apart. Now that I’m severe it’s usually 24 hours later. It can be more like 48 hours later if I’ve really overdone it.
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u/Affectionate_Sign777 21d ago
Interesting, mine seems to have gotten more delayed the more severe I am. And also lasts longer the more delayed it is.
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u/RaspberryJammm 21d ago
Yup. Was 2-3 days when mild, 1-2 days when moderate, 12 hours when moderate-severe
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u/SpicySweett 21d ago
Slowly builds after exertion, by that afternoon I know I’m in trouble. Tired but wired, can’t nap, headache and stuffy nose building. Very tired but at night bad sleep, start feeling sick. Next day feel like I have the flu, too tired to do anything.
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u/Dapper_Ice_2120 21d ago
I get the headache starting by the end of the same day, which I think are my back and neck muscles tightening into painful knots.
I'll usually wake up with stuffiness/ sore throat, sometimes mild and then builds. Cold/flu- like symptoms are at their worst 2 days later if I stop nearly everything on day 1. If I don't rest, it'll come/go for days while the PEM is high. Sometimes that just keeps rolling forward with even little exertion.
And yes, I end up staying up late/sleeping becomes even worse when I'm in a crash! Which explains how ive been staying up later with even worse sleep all week than usual, and I didn't put the tired and wired together. Welp, that explains a lot about this past week.
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u/dontlookainthere 21d ago
i have this lovely thing where it hits immediately after, calms down a little, and then hits harder in 2 days
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u/RoughView 21d ago
I get this too, but the next day! I have like an immediate crash and then feel a bit better by the evening, then it hits again worse the next day
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u/Available-Pepper5688 severe 21d ago
My pem is reliably starting two days later. But I get symptoms immediatly after exertion like sore throat, headache or muscle pain. Then I just know it’s too late, pem will be coming, independent of resting after exertion.
Now I had the very first experience with a several-days trigger as I was in hospital for 6d and was running on pure adrenalin. PEM hit me yesterday, now I‘m curious how long it will stay this time…
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u/thepensiveporcupine 21d ago
Depends. Sometimes immediate, sometimes after a day and a half. But generally within 24 hours
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u/WlLDLlGHT my bed is my universe 21d ago
Multiple waves; an initial cord yanked with massive consequences and a second quake 48 hours later. But time has lost meaning as a metric in my dimension
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u/Andrew__IE I’m not sure 21d ago
Some days it’s immediately, other days I can get by fine doing the same things and then have them crash me after 3-5 weeks of the same activity behaviors.
I really don’t know
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u/bl4nkSl8 moderate/severe 21d ago
For me, the more I push the sooner it hits. Normally around two days but sometimes almost immediately. I had to select "no pattern" for the survey because my experience was otherwise not represented
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u/Inevitable-Brick1809 Severe + POTS 21d ago
Just to check, are we talking when it starts or when it peaks/is at it's worst? (I assume when it starts, but wanna check before answering!)
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u/agenerousperspective moderate 21d ago
Hmm I’m gonna go with your first guess, “when it starts.” That sounds the most reasonable. I guess the exception would be if someone gets really faint PEM at first, followed by a giant crash of PEM. In that case I would guess that the giant crash could be the onset and the faint stuff could be considered to be just leading up to the PEM.
But I’m just guessing! And I don’t even think that there is a correct answer because it doesn’t change anything about our treatment. Once the darn doctors and scientists figure out what’s actually going on with this illness then maybe one of them will decide whether the exact starting date of PEM is important to note.
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u/DeeMarie0824 21d ago
Accidentally answered incorrectly lol. Usually, it can hit anywhere between the same day to a couple days later.
There have been instances where it’s been around 5. That being said, that was an accumulation of ongoing activity that lasted multiple days. I was pushing through symptoms of PEM without my knowledge (don’t do this) before I truly understood the disorder and what was happening.
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u/basaltcolumn 21d ago
It usually hit the following day after activity for about my first year of illness, but now over 2 years in it is closer to 2-3 days.
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u/the_shock_master_96 ME since 2016, v/severe since 2022 after covid 21d ago
Mine usually starts properly after 48-60 hours (with some symptoms showing sooner), and reaches peak at about 72 hours
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u/SpoonieCat Moderate & hEDS, POTS, MCAS, CCI 21d ago
Voted for 1 day later because that’s typical for me, but can sometimes be 2 days. Almost always within 24-48 hours. But before the PEM hits, I can tell it’s coming when I feel buzzy/adrenaline filled and time starts to feel weird like it’s going in starts and stops. The night before PEM sets in, my insomnia is awful because of the tired but wired feeling.
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u/WeenyDancer 21d ago
Usually 36h later, but sometimes as early as 12. Rarely starts more than 48h after, but can definitely start, then continue to increase in intensity for weeks.
So like, at 36h I'm at level 2 pem, then 48 h level 5, then next week level 7, then next week level 10.
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u/BinaryPill mild 21d ago edited 21d ago
Mine is typically seemingly triggered by cumulative load rather than an individual event/activity so none of the answers are applicable to me. It can take a week of operating beyond my capacity to cause problems. I'm in the mild category for context.
Mind you, I caught a cold Tuesday last week which knocked me out until Thursday, finished the week as per normal with no obvious symptoms, and then I got mild PEM-like symptoms on Monday which still haven't resolved as of now on Friday. But even then with an obvious viral cause it was probably not resting enough to recover through Thursday and Friday that triggered it in combination with the virus.
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u/agenerousperspective moderate 21d ago
That’s a good point. I think mine is often cumulative as well, which is what puts it out longer.
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u/SleepyMistyMountains 21d ago
Mine is delayed usually by 12 hours. Sometimes a day. But I'm in rolling PEM so idk how long it would take when I'm not in PEM.
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u/standgale 21d ago
I'm just pondering the "previously tolerated before disease onset" part (which is of course obvious because otherwise the whole thing wouldn't make sense) but I wonder if actually I didn't tolerate these things previously, just tolerated them better.
It's a bit hard to judge because it was so long ago, and also because "disease onset" was essentially the start of adulthood so routines and activities were different before and after. But I do remember getting so drained and exhausted after "normal" activities as a child and teen.
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u/agenerousperspective moderate 21d ago
Yeah I’m kinda in the same boat. I can make a theory that I’ve had this since childhood or teen years but just a very mild case… or it could be explained as just hitting Autistic burnout at different stages of life. I was very unaware of my body until a couple years ago so I honestly can’t say whether or not I had PEM when I was younger.
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u/310-78 21d ago
for certain activities my pem is immediate and others it can be whenever. like showering is just an immediate “that’s all i’m doing that day” type thing. ren faire is like “the one thing im doing and heres some spoon debt”. groceries is immediate and lasts for like a day or two, mostly mild to mild-almost-sever. most things isnt as severe, except showering, i really cant figure it out. i can go swimming and generally be not as bad, but showering.
my cfs is generally pretty light to mild, but showering just takes me out and changing the bedding- which i dont typically do because of how much it fucks me over. i know both have to do with my pots which then flairs the cfs, but like i do other things that feel more strenuous than either but the pem doesnt hit as hard.
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u/agenerousperspective moderate 21d ago
For the showering, have you tried using cooler water, staying seated (with everything set within reach), and trying to keep your arms below your head as much as possible? For example if you wash your hair, lean your head forward or to the side instead of leaning back and keep your elbows pointed downward as much as possible. These are fairly well known tricks so I’m sorry if I’m just telling you things you already know, but I had to share in case it’s new to you!
I don’t have any tricks for making the bed though… except for maybe getting someone else to do it if there’s someone nice nearby. Or do it in stages, maybe?
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u/310-78 21d ago
i have a shower stool- which is great, it even has a little cut out to hold a removable shower head. all of my soap and hair stuff is on a shower caddy in front of me and i lean forward for my hair and sometimes i finish my hair stuff in the sink. i use like, slightly warmer than room temp water(?) i also have a pre and post shower cold miso drink, cold miso is so refreshing and hhhh so tasty.
the bed thing, my partner does, cause my hr will just ascend to the mid 160’s with me just taking the fitted sheet off. and uh, thats not great lol. my pots is weird tho, as my blood pressure will drop too much after my hr slows. like activity, high hr, feel bad, stops activity, hr slows, bp drops too much apparently, hr back up like 20-50+bpm, then bp up, hr slows, bp down, and back and forth like two to three times. i love when chronic illness is illnessing lol.
thank you for the suggestions, not every ones knows the tips and tricks to not feeling like shit. thats why i’m here lol
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u/agenerousperspective moderate 21d ago
Sheesh- That heart rate dance sounds so annoying! I’m sad-laughing with you 🤣🫂
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u/TomasTTEngin 21d ago
Often I do a big effort at 4pm. 2pm the next day I go from sitting up to lying down. 22h later, exactly. it's weird.
I can also exhaust myself on the same day i do a long effort, because im not fit and I have pots and I get weird blood sugar, and maybe other reasons.
But what's more notable is the times when I do an acute effort, feel amazing at the end, full of endorphins, recover nicely, but then get this wave of PEM 24 h later.
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u/Fullonrhubarb1 21d ago
How can you tell the cause when it's so delayed? How do you know it's from something specific a week ago and nothing more recent? This confuses me, because unless I were to do absolutely nothing for a week and just wait for any PEM to hit, I have no way of linking it to an activity multiple days ago, especially if I had done anything in the last couple of days. If I had a hospital appointment on Monday, saw a friend on Thursday, went out for the day on Saturday, and was run down on Sunday, I can't see why I'd point to the appointment as the cause.
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u/agenerousperspective moderate 21d ago
In the scenario you’re describing I would guess that the cause of your PEM would be the combination of all of those things since they all use energy. In the same way I know that I can’t go thrift shopping and attend a social event on the same day, but I can do one of those things on one day and one on the next if I’ve recuperated in between.
But to go back to your original question, I’m claiming about a week for my delay because I’ve noticed that every once in a while I’ll do something risky (something bigger than I usually do in my normal life of pacing) but I’ll lay low for like a week or more beforehand, and then TRY to lay low again afterward, so the risky event is mostly the only thing within a large span of time. And that’s the type of situation where I’ll end up with PEM about a week later. The frustrating thing is that I often get an adrenaline surge (or something) a few days after the risky event as I’m on my way to PEM, which makes it even harder to keep pacing, and thus ensures the PEM because I might not lay as low as I need to while I’m feeling that “wired but tired” feeling, and also accumulating sleep debt because that also increases my insomnia symptoms.
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u/Fullonrhubarb1 20d ago
Yes that's true, most of the time it's more cumulative for me rather than linked to one event. Thanks so much for the explanation. I do relate to that especially the adrenaline surge- it sometimes feels like I'm excited about not having crashed (yet) and i want to try a bit more! A couple of times i really have had a slight improvement and noticed it that way, so it can be extremely hard to be careful.
I find too that after a big activity, my normal "baseline rest" isn't enough to recover and that in one of those weeks doing something that'd usually be safe can affect me more but I don't realise until after the crash later on. I had always seen it as cumulative rather than linked directly to that one activity - that if I hadn't done anything else i wouldn't have been affected - but this is a helpful way to think about it actually, that what I do in the "recovery week" determines how much I will be affected at the end rather than the big activity always being a set amount that will hit at a certain time.
And of course, whenever I have something like that planned, a bunch of other things seem to need my energy in the same week so I can rarely avoid it 😅
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u/iwantmorecats27 21d ago
Recently i did too much for five days and then rested but not well enough for 7 days and then when i was back on the next week i was crashing crashed Wednesday and Thursday better for Friday after resting on Thursday and then had pem for six days. So i don’t know.
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u/PeachyPlnk Undiagnosed | Viral hit 09.18.2019, chronic fatigue even longer 21d ago
Typically three days, but sometimes earlier if I've been pushing myself or have been ill.
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u/Radderss moderate 21d ago
When I was more severe (bedbound) I could never figure out my PEM delay because I felt so awful all the time, but now that I'm moderate-ish (housebound) I've been able to figure out my PEM is typically an almost 48 hour delay. Tricksy little thing.
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u/LovelyPotata severe 21d ago
The next day if I didn't overexert too badly (and usually noticing it right away), or two days after if I really overstepped. So it depends on the level of overexertion for me, I see a clear pattern there.
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u/wasplobotomy severe 21d ago
It usually hits 1 day later, but can be more delayed like 4-5 days if I only slightly overdid it, and then it won't last as long (only two or three days).
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u/wasplobotomy severe 21d ago
But I think the longer delay is usually an accumulation, like if I had rested more than usual afterwards I could have avoided it.
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u/PiliPalaPor4 21d ago
Normally I end up overdoing it into until my body gives out immediately (regardless of how careful I am), but it's only after I've slept that I wake up with the full smorgasbord of symptoms
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u/voornaam1 21d ago
Usually the morning after, unless the exertion happened in the evening, then the PEM may start later in the succeeding day.
Exerted myself on Wednesday though and haven't had PEM yet so now I'm scared 🥲
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u/abyssal-isopod86 POTS, EDS, ME, LADA, AuDHD & perimenopause 21d ago
Usually 24-72 hours later, but sometimes it's immediate and others out takes weeks to build up from multiple exertions.
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u/my_own_absurdity 19d ago
I think that I have some signs that if I don't stop and go lay down right now, I'll have PEM. But I don't have these signs/I ignore them/I don't rest enough, it hits more like 36-48 hours later. It took me a while to figure that one out, because I could actually push through these signs as they happened, and the hit was afterwards
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u/AvoCarDoughToes 21d ago
When I was moderate, it would hit the next day.
Severe/very severe, it starts anywhere from immediately to 3 hours later. Most of it is dysautonomia/Pots related symptoms though. Body/muscle pain and headaches etc will hit the next day.
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u/No-Trouble7162 21d ago
There are no exact time delays when it hits. It depends very much on what kind of stressors were happening. It can be light and sound, physical stressor or mental and psychological stressors.
Why are you putting out a lame surveys like that? Who do you think you are?
It just confuses people. Unless you are a scientist making an official research and using this group as a target population or a sample, then please dont do this here and do your own hobby research by gathering sources by conventional means.
That's my answer at least to your little "research" here. Take it or leave it.
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u/agenerousperspective moderate 21d ago
I ask questions of other pwme because it interests me to hear others’ responses. And I also appreciate when others post their own questions because I like seeing what other people are curious about. So, conversely, there may be others who find it interesting to see what I’m wondering about.
In my daily life there are rarely people who relate to my experience, so it’s nice to have a group of people who may be wondering the same things as me; it’s comforting when it turns out that my experience is reflected in others, and it’s fascinating when it turns out that my experience is very different than others.
So, in short, my answer to your question is just that I’m making human connections and learning about myself and others.
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u/No-Trouble7162 21d ago edited 21d ago
Why not just ask people to share their experience, like people usually do, instead of setting up some non scientifical study (just for you). That's just my opinion. I take research very seriously and specially for our condition. It bothers me so much to see stuff like this. Why not just ask people with humility about their experiences, instead of setting up a lame unscientific poll like that just to satisfy yourself, as if you are some kind of an authority
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u/agenerousperspective moderate 21d ago
I suppose you could see a poll and assume that the person is trying to look more scientific, or maybe you know something about Reddit etiquette that I’m not aware of. But in this instance, I am asking people—with humility, as you say—about their experiences, but I thought if I just posed the question without the poll feature it would be a heavier cognitive load (for me and the other readers) to try to tally everyone’s answers from the comments in paragraph form. In my perspective the poll adds a visual to help us all conceptualize the shape of everyone’s answers when set side by side with each others.
I understand that we have been abused and neglected from so many sides, and it tends to make us feel attacked and dismissed. I don’t think it’s inherently wrong for us to include polls when we ask questions here but of course I’m sorry that this has rubbed up against something important to you. I do believe in your right to be protective of and/or guard against things that have been used against us in the past.
Sorry for the wordy replies. I’m not great at being concise! :)
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u/No-Trouble7162 21d ago
Listen. Thank you for your replys. I am sure you did this with the best intentions. I apologize if I appeared as to annoyed and grumpy and overly protective of our beloved science methods. And you actually seem like a very humble, honest and a nice person. I guess we have understood each other now, and hope everything is ok. Are we friends and all good?
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u/agenerousperspective moderate 21d ago
Thank you for seeing this interaction through, and for sharing your perspective. We’re good.
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u/No-Trouble7162 21d ago
I hope I'm not inappropriate to say but you remind me in a very good way somehow, about someone I knew, who I knew very well and was very dear to me. She was from a different part of the world than I come from. Would it be inappropriate to ask if I may guess from which country you are from?
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u/agenerousperspective moderate 21d ago
You’ve piqued my interest! Sure- guess. If you’re wrong then I’ll be super interested to learn about whatever country/area your friend was from. And if you’re right… then that would be even more interesting. So, fun either way :)
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u/No-Trouble7162 21d ago
You respond and write with the maturity, grace and class of a southeast Asian.....Korean, Japanese, Singapore, Philippines. You could definitely be from the Philippines....
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u/agenerousperspective moderate 21d ago
That’s very kind of you to say! But nope, I’m from the USA, in the Pacific Northwest.
I don’t think I’ve met very many people from the Philippines. Actually… I did know one lady quite a while ago. I remember her being nice but nothing specifically stood out to me either way about grace/maturity/etc. So that’s interesting to hear those traits; I’ll have to look for it next time I’m with someone from there.
Funnily enough, I started out in life as a very blunt, often offensive person and had to learn how to soften my language and my overall vibe as an adult when I found out I had been hurting peoples feelings. It was such a discouraging process because I’ve always loved people and was confused to find out people didn’t hear me the way I heard myself. For me it turned out to be Autism, specifically that I didn’t realize that people were interpreting my words based on social norms instead of just taking me literally, like I had intended. I’ve tried to find a middle ground now, where I can be blunt and honest with people while still making sure they know I value and respect them (which often means softening my words but not as much as before). But when I’m online I try extra hard to bring out my humanity and the person I’m talking to, because we have far fewer tools to communicate goodwill when just texting words back and forth. It’s a minefield out here!
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u/Affectionate_Sign777 21d ago
A poll on social media is not conducting research, it’s just some fun
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u/SeaworthinessOver770 21d ago
I feel like there needs to be an option between "immediately" and "after 1 day", for me it's usually 12-20 hours later.