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.

 

[ChronicallyOverIt]

Even when I’m mild and not in PEM the non-restorative sleep and the poisoned feeling is a daily thing. Always there, I’ve never felt normal in the 5 years since onset even once. Always slightly poisoned.

 

[Lisan_Al_Ghaib_87]

While very mild (until last October) and not in PEM, I was feeling asymptomatic except when climbing more than 2-3 flight of stair or walking more than 6K steps a day for more than 2-3 days. In any case I am talking about very mild level, i.e. reduced capacity at least 40% and using medication/supplementation and compression boots.

 

[Trish]

Definite 'no' from me. I haven't had a moment without any ME/CFS symptoms in 36 years. Always all my muscles aching or in pain, always rapid muscle fatigability accompanied by increasing pain. Always OI, always feel generally unwell.

 

[Peter T]

While very mild, during periods of remission, I have had spells of minimal symptoms until PEM was triggered, but not for the last fifteen years. Now even at my best I am very limited as to how much I can do physically, and never experience premorbid cognitive functioning.

So for the first fifteen years of my ME I could to some extent answer yes, but for the last fifteen years my answer is no. So I in relation to ‘have you ever …’ I guess my answer is yes, though that no longer reflects my current and seemingly ongoing experience.

 

[MeSci]

Now even at my best I am very limited as to how much I can do physically, and never experience premorbid cognitive functioning.

Do you mean premorbid cognitive dysfunction?

 

[Yann04]

Minimal to no symptoms at complete rest. Yes I’ve had that during my gradual onset when very mild.

But as soon as I did something other than complete rest the symptoms would come back. So I voted “no”.

 

[MeSci]

I'm pretty much like @Peter T - I've had spells of being asymptomatic at baseline in the past, and also very little PEM, but I don't think they've lasted more than a few months, at least the last time, which was at least ten, maybe 15 years ago.

 

[Peter T]

Do you mean premorbid cognitive dysfunction?

No, early on I remember windows of my brain working as it had before ME and how liberating that felt, however I have not even had any experience of normal pre ME cognitive functioning for well over ten years. So now my cognitive dysfunction seems ongoing.

 

[Sean]

No. Have not had a single symptom-free day since the day I got sick, more than 40 years ago.

 

[Trish]

Some probably pointless reflections on the use of the word 'baseline' in the question.

Does any of us who is never asymptomatic really have a baseline? What if our lives were such that we could totally avoid triggers? Could we be asymptomatic too?

Is the baseline about symptoms, or exertion capacity?

If my symptoms build up during every exertion, but I can stop soon enough and rest for long enough to avoid crashing the next day into a bad episode of PEM, have I truly stayed within my baseline?

What if the effects of all exertion accumulate for days or weeks so the extra exertion I attribute my next crash to is really just the straw that tips me over the edge, not really the trigger on its own. If so, where is the baseline in all that sequential exertion?

Why do so many researchers focus so much on symptoms of PEM, and ignore the devastating loss of function that goes with them? Why don't questionnaire designers recognise that many of the tick box symptoms they list on PEM questionnaires are ME/CFS symptoms most of us have all the time, so counting symptoms for 'measuring' either ME/CFS or PEM is highly misleading.

If I were forced somehow to do no exertion beyond surviving, perhaps by being put in induced coma, would I finally achieve my baseline? Would I be asymptomatic?

 

[T&O]

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.

Yep, me too.
ME currently incredibly variable/unreliable.Other illness more constant.
Very early on (post months of bedbound illness, Chicken-pox at age 16 or 17 -which is possibly when ME began) ,
had a few periods of concerts, performance, and written exams … some were lethal fatigue wise, others not so much. Seemed more cognitive than physical exhaustion though I remember “heavy leaden legs” from earlier days (when I was younger) without the full fatigue. Chasing/following cattle up and down hills as a kid to shut the gate before they circled back etc. without huge fallout.

 

[Peter T]

If I were forced somehow to do no exertion beyond surviving, perhaps by being put in induced coma, would I finally achieve my baseline? Would I be asymptomatic?

I think the specialist services, at least the UK ones, can delude themselves that there is such a thing as a stable baseline because they only see people with mild or the mild end of moderate. We really could do with some long term activity monitoring, perhaps even over decades.

Over the years I think I am getting better at predicting what might be making me worse in the short term, however there are still variations that I can not explain in terms of my activity, adventitious infections, sensory stimulation, diet, etc. There seem to be variations in what I term my underlying ME/CFS that I can not explain. In terms of variation in my overall function there might be even cycles that happen over years or even decades. I have been lucky as at times I have experienced some spontaneous improvement, despite the overall trend being to get worse.

Ignoring the slings and arrows, ie events beyond our control, if people are aware of PEM triggers, sensory issues, orthostatic intolerance and any dietary issues they may be able to reduce day to day variations but I suspect most of us also experience some variation in symptoms that we can not reliably attribute to identifiable external factors.

 

[T&O]

Yep, me too.
ME currently incredibly variable/unreliable.Other illness more constant.
Very early on (post months of bedbound illness, Chicken-pox at age 16 or 17 -which is possibly when ME began) ,
had a few periods of concerts, performance, and written exams … some were lethal fatigue wise, others not so much. Seemed more cognitive than physical exhaustion though I remember “heavy leaden legs” from earlier days (when I was younger) without the full fatigue. Chasing/following cattle up and down hills as a kid to shut the gate before they circled back etc. without huge fallout.

Meant to add , even so, No.

 

[duncan]

I suspect that there are some of us that were entirely asymptomatic except for PEM (and that at relatively low intensity), in the very early stages of the disease. I'm talking the first several months, maybe even year or two. Of course, this would likely be mostly restricted to those of us with gradual onset.

 

[nataliezzz]

I suspect that there are some of us that were entirely asymptomatic except for PEM (and that at relatively low intensity), in the very early stages of the disease. I'm talking the first several months, maybe even year or two. Of course, this would likely be mostly restricted to those of us with gradual onset.

Yes, this was kind of what I was originally thinking, but my experience with having the episodic PEM without (noticeable) baseline symptoms as a kid went on for several years. And it seems like people who have had ME/CFS for longer can reach a state where they are like this, so perhaps it makes more sense to posit that it just reflects a milder state of the illness rather than an earlier state, although I think milder forms of the illness can present in different ways - e.g. some people like @Creekside may lose PEM but still have other symptoms (and the illness starting that way - with just chronic fatigue and/or other symptoms without PEM - seems to actually be a more commonly reported experience than the reverse [PEM without baseline symptoms]).

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.

 

[DHagen]

I suspect that there are some of us that were entirely asymptomatic except for PEM (and that at relatively low intensity), in the very early stages of the disease. I'm talking the first several months, maybe even year or two. Of course, this would likely be mostly restricted to those of us with gradual onset.

It is both fascinating and frustrating that onset seems to be so varied - while clearly some who suffered gradual onset had periods like you describe, in which they feel fine or mostly fine except for those unexplained flares, there are others, like myself, who have the opposite, in that I experienced years of being generally unwell (what I suppose might now be considered my "baseline") before the first identifiable episode of PEM.