Anyone barely experience PEM at all?

Alvin2

The good news is patients don't die the bad news..
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You have had all your hormones from thyroid to sex hormones checked, right?
Also B12/D3 levels?
 
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My experience thus far has been: a year or so of all-day tiredness, hypersomnia (but unrefreshing) and little or no PEM. Then an abrupt 'flip' to: insomnia, fairly low threshold PEM (mental and physical), plus occasional random bursts of crashes and remission.
There sure does seem to be a lot of individual variability in this disease (or cluster of diseases as the case may be).
 

Wishful

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If exercise doesn't make you worse then you don't have real ME.
No, a subset of PWME don't get physically limiting symptoms, such as weakness or reduced endurance, and some don't trigger PEM from physical exertion but do trigger on cognitive exertion. ME varies too much person to person to make such definitive statements. I no longer get PEM, but that doesn't mean that I no longer have ME; it just means that I managed to fix one aspect of ME. Some other person might manage that same 'fix' before they experience their first episode of PEM and have all the other symptoms of ME but still not qualify based on a criteria that requires noticeable PEM.
 

Wishful

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did not have PEM per se, during decades of mild.....I"d have "eppstein barr relapses"....
I had years of 'feeling worse the day after a day of feeling good enough to go for a long bike ride'. Then I read about ME and PEM. I expect there are a lot of people who believe they have some weird 'flu that keeps coming back for just a day' or some other explanation for why they feel worse some days, who may someday read about ME and realize that it fits.
 
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For me PEM is mainly inflammation, headaches and neck and stomach tightening for hours after a physical stressor, it almost always Involves heat, I can't get hot without huge brain fog afterwards eg 2 hrs of helping a friend do up some nuts and bolts on the sun, a bit of thinking and a tiny bit of stress, on the way home I forgot how to drive through simple traffic lights. I saw the colour of them but somehow I wasn't sure what to do. If I do exercise I boil on the inside (unless I take an anti inflammatory or panadol) heat killed me before I had cfs/me and often resulted in what seemed like heat stroke. My stomach would go freezing cold too. I frequently have a red swollen uvula and sore throat that looks a lot like mono, yet its gone 2 days later. Fatigue is there, with headaches and brain fog, a head feels like its full of fluid and a crappy mood that changes all over the place and I don't sleep well after exercise either. I used to get tired arms hanging out washing, just elevating them with a tea towel was enough to get a huge lactic acid 'burn', 5 years later it's not so bad
 
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