Hi Uhura - I haven't been diagnosed with CFS either. But I wonder whether it's coming up, because I'd go even further: It's not the pains or Ache or tiredness or seeming weakness or fog that's been most debilitating, it's the limited energy, so fatigue. My sleep lab psychiatrist recently said: Fatigue is my foremost symptom now, whatever the reason that it's has got so much worse.
The rest of this post is only for those that can use a bit of my details on this. If you don't, please skip it.
You may be able to decipher that from the percentages in my blog-excerpt in my signature at the moment. I'll try to explain:
My pains are good (10%, so the other way round "painless 90%"), because I know what to do to prevent or stop them.
My alertness is quite good (80-90%), so my fog conversely is 20-10%.
My (severe) Ache from overdoing it is tolerable ("Acheless 80%", so the Ache is the opposite: 20%, i.e. 2 or 3 of 10, where 7 is crying).
My sleep quality isn't particularly good at the moment, but my tiredness doesn't stop me from doing things in the day.
But as my energy has gone down to 10% (so 90% fatigue). What I mean with that is that I can only manage 1 (of 10) hours of activities per day, and that has to be divided up into 2x 30 mins., without severe backlashes. The fatigue doesn't make me fall asleep (day, or night). That's because too much cortisol ("adrenaline") seems to be my main problem. But my body gets heavy and my Ache goes up to 4 or 5 of 10 ("40-50%") if I push thru, and my wife says I then look wrecked. So it is still associated to the Ache.
Even before the MCAS-fatigue, which might be a different issue, the lack of energy was one of my greatest problems.
My energy then was about "35%" on good days, meaning 3.5 hours of activity per day, like 2.5h of work and 1-2h of further stuff like table tennis, meeting with family. It could be 5-6h if I was very careful, or a really good day, or a backlash fort a few days was OK.
It also didn't seem to be quite that big an issue, because I had some short energy bursts.
Now back down to 10%, as I'm "in a flare on top of the momentary flare, which is added to my already long flared full flare",
And like yours they aren't mainly pain or Ache flares.
(Basic full flare is fibro, 2nd basic flare is now the MCAS, which the jabs have flared that thirdly, especially the 2nd jab, and my strenuous allergist visit 10 days ago have put me back to the beginning of the jab reactions. Actually I could say the 2nd jab was a 4th flare on top of the the flare of the 1st jab, so the allergist appointment has come fifth on top of all that.)
I've kept all my many fatigue supps up. So the only treatment I've found is my Chinese acupuncture, although it throws my cortisol out of balance and may be making it worse when a flare is fresh. And my only handle on it is moving extremely slowly, saving energy where I can. When I shuffled out of a shop with pretty heavy bags yesterday, an acquaintance in front asked if I was that knackered. "Yup", I said, "but it's chronic". The weight wasn't the problem, it's things like movement, talking and listening (not writing... ;-D).
. I did start to use some of the stretches at home. But since have so many more that are more helpful. Since I'd learnt to do them short and not too sharp, I can try anything.
