1) When did your PEM started. At the same time of illness or later?
2) What does your PEM feels like.
3) Is it constant or Comes and Goes, does it get better and worse.
4) What is the relationship of PEM w activity level. Is the PEM worse when relapsing?
5) Do you get any sign that PEM is coming and are you able to avoid?
6) Is there a particular time of the day where you are more likely to experience PEM.
1) I am really unsure when PEM started. Or has it all been PEM from the beginning? It's hard for me to tell, but I suddenly went from being super fit and active to unwell and all I knew was doing anything much was wiping me out -not in a normal tiredness way but in a really creepy way (thought I had a terminal ilness.)
I have always walked, miles each day...sometimes 2, sometimes 10. So when this started. it didn't seem to be a case of having pushed my body too hard all at once. I had walked 10 miles 2 days, and 6 miles the previous day before I became suddenly ill. But that was not an unusual thing for me.
But I do remember that on that walk I was drenched in sweat. Soaked. I had to change every item of clothing and shower again when I got home. That was unusual. And when I got home I was unnaturally, ravenously hungry -much more than normal after exertion. Those were the only two odd things that happened. 2 days later I became unwell.
I didn't know anything about ME/CFS, and had never heard of PEM until 6-7 months into the illness.
So I more or less kept going doing my usual things. Some days I would get "rest breaks" from symptoms....sometimes for hours, or for a day or two, but it didn't appear to be related to exercise. However, I couldn't even think of doing my normal exercise. I took gentle 1/2 mile walks instead, because I felt so rough.
Sometimes I don't get PEM when I do things. Even moderately strenuous things. Yet sometimes I can clearly trace what I've done with feeling worse say -a day or usually a couple of days later. So -with myself -I still don't understand it. I can go for a 4 mile walk sometimes and NOT get PEM! Other times, I get it from cleaning the kitchen floor! Or mental strain and hard focus.
2) It feels like coming down with flu except I don't get sore throat, swollen glands or respiratory symptoms. Just like the hours one is definitely "coming down with flu" but the full symptoms haven't started yet.
Except in my case those feelings continue for days, sometimes a week or more.
I get a shaky "malaise" feeling...loss of normal appetite (alternatively sometimes ravenous insatiable hunger (for savoury "real" food rather than sweet things)...feel feverish (yet never any fever!) Feel a bit "drunk"....some adrenalin-type reactions after eating...irregular heartbeat and missing beats....exhaustion when doing any task....wanting to take more deep breaths....some nausea at times....occasional "stroke-like" effects in my legs (though they usually pass in minutes, though they scare me witless when they happen)....emotional lability (tearful only.)....over sensitivity to coffee and alcohol....random nerve pains in different parts of body which go away usually in a few hours.....focus and concentration difficult....sometimes forget passwords, names, etc. Inability to focus on anything heart-felt that I hold dear.....extremely low body temperature suddenly, and cold hands and feet.....eyes watering extremely when outside even if it's not too cold (I now have to take loo paper everywhere for my eyes!) Waterproof mascara is more useful than it ever was before!
And in the bathroom department....I am never literally constipated or literally have diarrhea, but sometimes there are some slight disturbances outside my "norm".
3) It comes and goes. I can have periods where I feel almost normal. At first I felt that for very short periods (an hour or two at a time....graduating to a day or two later on) But now, it is possible for me to feel okay-ish for sometimes a week, two weeks? Maybe longer at times. Sadly when that happens I fall for it every time "Hey, I think I'm better!!"
Those improvements cannot be traced to any changes I have made, in supplements, diet, exercise or rest, or any positive changes in my life, or to emotional pleasant events. The improvements, so far, appear to be completely random. (as are the crashes for the most part.)
The only pattern I have (I think) noticed is seasonal. When it's the absolute middle of winter, or the middle of summer, I get a good remission usually. The worst times seem to occur just as the seasons are first beginning to change.....first traces of Spring coming, or Autumn, etc. If it snows I can feel okay! If it thaws, I can feel worse.
4) Yes the PEM is more obvious to me when I am relapsing. An easy walk will wipe me out. Washing a few clothes will make me shake all over.
5)Yes....I think so. If I am walking up a slight incline (not even a "hill" !) and I am out of breath from that, then I view that as a sign I need to seriously lie down. The "fluey" feeling is also a sign. Like I'm coming down with a bug, but never actually am. Also if I wake up in the morning after a good 8 hour sleep, and just want to go back to sleep, that's another warning. Being too hungry or feeling vaguely nauseous suddenly is a warning. An extremely low body temperature after I get up a.m. is another sign. Not being able to tolerate a warm bath....another one. An over-reaction to my fairly weak morning coffee. Feeling way too drunk after a couple of teaspoons of brandy or half a small bottle of mild beer.....etc.
6)After getting up in the morning. Also in the afternoons. Better usually in the evenings from warmth and rest and food....though not always.