PEM for those who are, or were, mild sufferers, how would you describe it?

Mij said:
@Subtropical Island thanks for your explanation. Do you have autonomic issues?
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I don’t know. I feel better when I lie down. I have been unable to read more than a few lines for years but now I read lying down and can do a lot more of it. But I’m also just improving anyway (maybe just because, maybe because I am getting treatment for the gut part which correlates with my worst years). Compression tights help. Keeping fluids up helps as does salt to taste in my drinks. But no, never diagnosed nor assessed for OI.

[ETA: hang on, do you mean the chills? I definitely have had huge trouble with getting rapidly cold in environments where no one else is, apparently due to overactivity.
ETA2 am over-quota for browser use today and am awaiting a bout of PEM from yesterday so I’ll stop now before I start saying dumb things]
 
I think it is useful to note the list of diagnostic symptoms (here copy/pasted from CG53).
  • difficulty with sleeping, such as insomnia, hypersomnia, unrefreshing sleep, a disturbed sleep–wake cycle

  • muscle and/or joint pain that is multi-site and without evidence of inflammation
  • headaches
  • painful lymph nodes without pathological enlargement
  • sore throat
  • cognitive dysfunction, such as difficulty thinking, inability to concentrate, impairment of short-term memory, and difficulties with word-finding, planning/organising thoughts and information processing
  • physical or mental exertion makes symptoms worse
  • general malaise or 'flu-like' symptoms
  • dizziness and/or nausea
  • palpitations in the absence of identified cardiac pathology.

Pretty much all of these at one time or another have been important during PEM for me.
During some periods some symptoms may be constantly present and exacerbated during PEM.
Headaches used to be a large part in the early five years, not since.
(and the above 'exertion makes symptoms worse' is not an error as during PEM, 'payback' for doing too much can be almost immediate).
 
Subtropical Island said:
a recent report put my husband’s reporting of my PEM down as “lethargy”
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:rofl::rofl::rofl:
Sorry, it's not actually funny, I know, only when I had my first spell of ME as a child I wasn't diagnosed with ME but with "fainting and lethargy" (and promised I'd grow out of it...)

Anyway, re @Andy's question:

During my 2 near complete remissions I got a very mild form of PEM that I mistook for 'some virus' at the time (I wasn't diagnosed back then).

It always started the day after some bigger than usual exertion; I just assumed I was a bit run down because of the exertion and therefore more susceptible to catching 'some virus'. Though I could never work out why I seemed so prone to becoming 'run down' when everybody else seemed to be able to just shake off the same level of exertion and do it all again the next day. Whereas I was having to take it easy for a few days, waiting for that 'virus' to disappear.

Symptoms: first there was a sore throat soon followed by that run-down, under-the-weather, slightly feverish, slightly achy, brain-not-quite-with-it feeling you get when you're coming down with a bad cold. Except the expected runny nose and cough never eventuated.

I was also always aware that I was more easily fatigued, physically and mentally, than others around me, not hugely so, but enough to be obvious, and for no good reason as I seemed otherwise very fit and healthy.

So, a lack of stamina, delayed flu-like symptoms and brain fog - all mild - were the PEM features I got even during near complete remissions. They're still my main PEM symptoms now, only much much worse. So even when the ME was at its mildest my PEM symptoms fitted the CCC/ICC PEM/PENE descriptions quite well except for their lack of severity.

I also had various other mild symptoms, notably OI, right through but I can't recall if they worsened during PEM then, though they certainly do now.

ETA: A lot of people here seem to report versions of the "virus" that wasn't a virus. Maybe that's something to work with?
 
Ravn said:
ETA: A lot of people here seem to report versions of the "virus" that wasn't a virus. Maybe that's something to work with?
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I note that you can't reliably say that 'my CFS was not due to a virus' - as some of the viruses loosely implicated are basically nonsymptomatic at time of initial infection for a good fraction of people.

That's not to say that there are no non-viral causes, just that asymptomatic virus causing the same triggering to the immune system that symptomatic does is not impossible.
 
'Virus that's not a virus' really chimes with me. I feel as if I'm coming down with a cold, but it never quite materialises.

I also think the pattern's much more important than a list of symptoms, specially for people who're still working or studying.

• Keeping weekends clear to rest
• Reducing or cutting out social activities
• Collapsing in a heap as soon as you get home
• Cancelling arrangements all the time
• Needing sick leave for symptoms that are hard to describe other than 'having a virus'
• Telling people you're doing something else when you're actually resting or sleeping
• Suddenly realising you need to get home, and feeling distressed if you're not able to

Other things that are important in newly-diagnosed or as-yet undiagnosed people with mild ME:

• Unable to sleep after doing something active, with your brain whirring around as if you've just been on a teenage first date
• Burning pain in your muscles that's only there when you lie down
• Women: feeling as if you have a nasty virus the week before your period, every single month
• Taking a long time to recognise your fatigue as being unusual, especially for those with a gradual onset
(It sounds crazy, but it took me 20 years – I thought everyone felt exhausted most of the time, but I was just a bit less robust than others about dealing with it.)
 
Kitty said:
'Virus that's not a virus' really chimes with me. I feel as if I'm coming down with a cold, but it never quite materialises.

I also think the pattern's much more important than a list of symptoms, specially for people who're still working or studying.

• Keeping weekends clear to rest
• Reducing or cutting out social activities
• Collapsing in a heap as soon as you get home
• Cancelling arrangements all the time
• Needing sick leave for symptoms that are hard to describe other than 'having a virus'
• Telling people you're doing something else when you're actually resting or sleeping
• Suddenly realising you need to get home, and feeling distressed if you're not able to

Other things that are important in newly-diagnosed or as-yet undiagnosed people with mild ME:

• Unable to sleep after doing something active, with your brain whirring around as if you've just been on a teenage first date
• Burning pain in your muscles that's only there when you lie down
• Women: feeling as if you have a nasty virus the week before your period, every single month
• Taking a long time to recognise your fatigue as being unusual, especially for those with a gradual onset
(It sounds crazy, but it took me 20 years – I thought everyone felt exhausted most of the time, but I was just a bit less robust than others about dealing with it.)
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Brilliant list.

I would add to that: any pre-existing mental health problems becoming worse
 
Kitty said:
• Taking a long time to recognise your fatigue as being unusual, especially for those with a gradual onset
(It sounds crazy, but it took me 20 years – I thought everyone felt exhausted most of the time, but I was just a bit less robust than others about dealing with it.)
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I thought I was a weak willed person that was misbehaving. That was essentially the message from other people around me and I was willing to believe it and thought that I just had to become a better person and try harder. It was the typical misguided psychological explanation that is really just unintelligent prejudice. That strategy didn't work but made everything worse.
 
Wow, sometimes I wonder if I really have me/cfs, but then I read this and it's spot on!

When I was really mild, I didn't know that exertion was the problem. So I thought for a long time the symptoms were random.
It started with a lot of infections for me, mostly bladder (about 20 in one year) and respiratory/tonsilitis a the start. I never have that anymore.

I had horibble stomach pains, which woke me up every night around 5 and had me panting in a foetus position for about an hour until it went away. I thought at first my exhaustion had something to do with being up with so much pain every night?

I just thought I had weird three day hang overs (from one glas of wine:laugh:) and was constantly coming down with the flu, but the symptoms were sometimes gone within a day or two days and I never actually got a flu with fever.

For me, PEM is like a hang over after a night of heavy dancing and drinking. That's the mild version when I'm pacing well. When I overdo it, it's more like the flu. Muscles burning, brain not working, so exhausted that walking to the kitchen seems like an effort. Oh, and the more I do, the less I can sleep and the worse my sleep quality is.

I do have good medications now, so a lot of symtoms are a lot less. I do sleep now because of melatonine. A higher dose gets me to sleep even with awful burning muscles. My gut is very good now because I have been treating SIBO.
 
rogerblack said:
I note that you can't reliably say that 'my CFS was not due to a virus' - as some of the viruses loosely implicated are basically nonsymptomatic at time of initial infection for a good fraction of people.

That's not to say that there are no non-viral causes, just that asymptomatic virus causing the same triggering to the immune system that symptomatic does is not impossible.
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Just to be clear, my "virus that wasn't a virus" comment was not about causes of ME - that's a different question altogether - it was about what PEM feels like when you don't know you have ME/CFS/PEM.

I like @Kitty's idea of a list of behaviours as an additional tool. Many of the individual behaviours are of course not specific to ME or PEM so I think it would be useful to have a combination of:

1) a list of behaviours that could point to PEM

2) descriptions - note the plural - of what PEM can feel like, especially mild PEM as that's harder to recognise

3) descriptions of what PEM is not - to avoid confusion with plain vanilla exercise intolerance and post-exertional fatigue (common in many conditions)
 
One thing I didn’t bring out perhaps as much as I should have in my post #15 is how I had mild depression diagnosis (due to parents ill health/death - basically protracted grief) and this detracted from anyone -me included - picking up that my physical condition was getting worse. I think that minor depression is still on my medical record as live although I got off the Prozac in 2016. I’m not in denial that I was down on and offand on occasions I couldn’t face going in to work which I think is pretty normal grief. However as I was having these viral like illnesses every few months and having to push myself due to lack of energy i have a gut feeling that I mainly had mild ME overlaid with grief episodes that would be a reaction to a worsening, eg hospital admission of one or other parent. The wood wasn’t being seen for the trees.

When I had the viral illnesses I physically didn’t have the energy to work it definitely felt quite different to that bursting into tears at the thought of having to speak to someone feeling. I remember setting off to drive to work pushing through feeling awful and got about half a mile down the road and had to turn round because I felt so physically bad I knew I shouldn’t be behind the wheel.
 
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NelliePledge said:
One thing I didn’t bring out perhaps as much as I should have in my post #15 is how I had mild depression diagnosis (due to parents ill health/death - basically protracted grief) and this detracted from anyone -me included - picking up that my physical condition was getting worse. I think that minor depression is still on my medical record as live although I got off the Prozac in 2016. I’m not in denial that I was down on and offand on occasions I couldn’t face going in to work which I think is pretty normal grief. However as I was having these viral like illnesses every few months and having to push myself due to lack of energy i have a gut feeling that I mainly had mild ME overlaid with grief episodes that would be a reaction to a worsening, eg hospital admission of one or other parent. The wood wasn’t being seen for the trees.

When I had the viral illnesses I physically didn’t have the energy to work it definitely felt quite different to that bursting into tears at the thought of having to speak to someone feeling. I remember setting off to drive to work pushing through feeling awful and got about half a mile down the road and had to turn round because I felt so physically bad I knew I shouldn’t be behind the wheel.
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SAME. For ages I thought my symptoms were just "physical symptoms of depression" (because lots of depressed people describe feeling tired and unable to move). Then I recovered from depression and my symptoms were still there and in fact getting worse.
 
When I first got sick I didn't recognise PEM. My most obvious symptom was whenever I tried to do anything I felt unwell instantly.

I got sick from glandular fever, and my most obvious symptoms in the first few years were exercise intolerance and feeling like my glandular fever was back every time I tried to do things.

I think I only noticed delayed-onset PEM about 4 years into my illness.

But this might be because I didn't have the language to recognise/describe it because for the first three years I was undiagnosed so I called it 'glandulated'. I didn't know PEM was a concept that existed.
 
Andy said:
So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the risk of mild sufferers not recognising PEM for what it is.
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Good point. I know i'm in the minority here, but I would recommend de-emphasizing PEM as a critical inclusion criteria. I believe a lot of folks say that PEM is the cornerstone MECFS symptom, but for the several years I was mild--say through mid-last year, I very rarely got what I think is PEM. Basically you know you have this syndrome if you have unrefreshing sleep, always feel tired and have diminished cognitive abilities.

If PEM is the disease within the disease, and as my disease gets worse, I find it difficult to tell the difference between the disease and the PEM. Now I get that feeling where I really can't do much for a couple days more frequently, but don't know if that's the disease or the disease within the disease. I don't know what causes the days of feeling worse. Looking at my phone it looks like I can have multiple days in a row around 10,000 steps, so the fact there are multiple days in a row might indicate that the physical activity is not a trigger for me. But as someone else said, in a different thread, maybe it's a cumulative thing where you reach/surpass X physical or cognitive units, then you get worse (PEM).

PEM is never a sore throat or nausea for me.
 
Kitty said:
'Virus that's not a virus' really chimes with me. I feel as if I'm coming down with a cold, but it never quite materialises.

I also think the pattern's much more important than a list of symptoms, specially for people who're still working or studying.

• Keeping weekends clear to rest
• Reducing or cutting out social activities
• Collapsing in a heap as soon as you get home
• Cancelling arrangements all the time
• Needing sick leave for symptoms that are hard to describe other than 'having a virus'
• Telling people you're doing something else when you're actually resting or sleeping
• Suddenly realising you need to get home, and feeling distressed if you're not able to

Other things that are important in newly-diagnosed or as-yet undiagnosed people with mild ME:

• Unable to sleep after doing something active, with your brain whirring around as if you've just been on a teenage first date
• Burning pain in your muscles that's only there when you lie down
• Women: feeling as if you have a nasty virus the week before your period, every single month
• Taking a long time to recognise your fatigue as being unusual, especially for those with a gradual onset
(It sounds crazy, but it took me 20 years – I thought everyone felt exhausted most of the time, but I was just a bit less robust than others about dealing with it.)
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Yep, brilliant list - the pattern should be important. Count me in as being like this for many years in my mild state without meeting ICC or CCC until I deteriorated after implementing increased exercise at doctors advice.
 
Kitty said:
'Virus that's not a virus' really chimes with me. I feel as if I'm coming down with a cold, but it never quite materialises.

I also think the pattern's much more important than a list of symptoms, specially for people who're still working or studying.

• Keeping weekends clear to rest
• Reducing or cutting out social activities
• Collapsing in a heap as soon as you get home
• Cancelling arrangements all the time
• Needing sick leave for symptoms that are hard to describe other than 'having a virus'
• Telling people you're doing something else when you're actually resting or sleeping
• Suddenly realising you need to get home, and feeling distressed if you're not able to

Other things that are important in newly-diagnosed or as-yet undiagnosed people with mild ME:

• Unable to sleep after doing something active, with your brain whirring around as if you've just been on a teenage first date
• Burning pain in your muscles that's only there when you lie down
• Women: feeling as if you have a nasty virus the week before your period, every single month
• Taking a long time to recognise your fatigue as being unusual, especially for those with a gradual onset
(It sounds crazy, but it took me 20 years – I thought everyone felt exhausted most of the time, but I was just a bit less robust than others about dealing with it.)
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Yes excellent list @Kitty I would say two other red flags are using paid holiday to cover days when you’re actually unwell, if you’ve got a job where working from home is possible, working from home but you’re actually answering emails and doing phone calls in bed.
 
This thread is starting to get me a little concerned as to whether, after all these years, I may have started developing a mild form of ME myself. (It's not contagious, is it?) Or is it just that I'm run down and/or possibly menopausal which might be creating similar symptoms? I'll keep more alert about the possibility, anyway.
 
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