Have you experienced being asymptomatic when not in PEM?

[nataliezzz]

I am curious how many people have experienced the phenomenon of being asymptomatic at baseline but still experiencing episodic PEM -- and when I say asymptomatic at baseline, that would include ability to do activities of daily living without rapidly fatiguing/bringing on symptoms - if you only experience(d) being asymptomatic at baseline while staying at a very low activity threshold that is still interesting (and please share in the comments) but don't answer Yes to the poll.

I experienced something like this as a child (see below) - it's possible I had some degree of day-to-day chronic fatigue and was just not aware of it due to having no clear baseline, but if I did it, it didn't interfere with daily life and activities, and I have heard from several others that they experienced something similar early on in their illness (i.e. they had no noticeable chronic fatigue or other symptoms at baseline, but their first symptom was feeling flu-like/exhausted the day after exercising).

Possible mild ME/CFS as a child: experienced PEM (exhaustion/fever the day after playing hard all day - my mom called it my "overtired disease"), but no (noticeable) chronic fatigue/reduced functional capacity on a daily basis. PEM went away in middle school.

I thought maybe this was just something that may occur at the early stages of the illness, but it seems like people who have had ME/CFS for a long time (do they technically meet criteria for ME/CFS if they have no chronic fatigue/reduced functional capacity at baseline?) can have this presentation. For example, see some of the comments on this Reddit post (screenshot below).

I'm also curious if you've experienced the opposite (just chronic fatigue and/or other symptoms without PEM) at any point in your illness - I've experienced that too (it's possible I had some mild PEM that I was not aware of, but I didn't have crashes early on) - maybe I will make a separate poll for that, but feel free to share in the comments.

ME/CFS started with just fatigue and unrefreshing sleep and I developed pain/orthostatic intolerance/PEM later on

 

[Kitty]

Only during two remissions early on, but never otherwise.

I'm not in PEM for about 70% of the time, but still have most of the symptoms of ME/CFS.


ETA:

I don't have much fatigue, it's more a limited capacity for activity and very rapid muscle fatiguability. The fact that ME/CFS symptoms aren't 90% fatigue is a commonly misunderstood feature.

I have fatigue associated with another illness, and I've never had anything like it with ME/CFS. It's a profound heaviness that stays at the same level for months on end. ME/CFS fatigue can quite vary a good bit over the course of a single day.

 

[DHagen]

Due to having had a very gradual onset, it is difficult to say when my ME/CFS properly started, but I certainly had years of feeling like I hadn't slept in days (and sometimes hadn't - the insomnia was terrible), but did not experience the sort of symptoms that I would later come to associate with PEM (nausea, extreme sensory sensitivity, burning skin and muscles, vertigo, generalized aching, malaise, etc), even when regularly engaging in exercise (ranging from 4 mile jogs to hiking hundreds of miles to HIIT).

The symptoms that started me down a path to diagnosis (insomnia, feeling like I hadn't slept for days even when I had managed to sleep soundly, pronounced difficult with cognition and memory, episodes of extreme fatigue, tinnitus, etc) have stuck with me and have never gone away. They fluctuate quite a lot,alongside a few others that did not appear until after my first proper crash (inability to listen to music, various sensory sensitivities, constipation, frequent tachycardia & arrhythmia, etc), but these symptoms are always with me to some extent no matter how "good" I am doing.

When I have shared this, I have had people tell me that I "must" be in rolling PEM or I would not have any of these issues, but I do not believe that to be the case (though I certainly can't be sure of anything and often fret over it). I will admit that I have experienced long periods without obvious PEM, which might support this interpretation. I honestly don't know. Regardless, there are an awful lot of pwME who have a tendency to generalize their own experience to establish an ME/CFS characterization that they treat as not only normative, but absolute, which I find enormously upsetting... but now I'm getting quite off-track.

TLDR: I voted "no."

 

[Creekside]

I'm also curious if you've experienced the opposite (just chronic fatigue and/or other symptoms without PEM) at any point in your illness

I had baseline symptoms that flared up in PEM, but then I cured my PEM (cumin!), so I don't get those flares any more. Still have lethargy (not "fatigue"), brainfog, and aches that flare up due to food intolerances and/or microbiome shifts.