fatigue flare up

Uhura

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I have not been diagnosed with chronic fatigue but I get into these weeks of fatigue where I can barely do anything. If I am moving like when shopping I am awake enough but as soon as I sit down, I fall asleep during what I am doing.

Does anyone else have flare ups of fatigue even if pain isn't flaring up?
 

JayCS

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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).
 
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Auriel

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Yes Uhura, even if I’m having an okish pain day fatigue can come along + whack me in the face! maybe get some bloods done just to check there’s not something else up
🤗🍫🤗
 

fimi

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I sometimes feel that I'm a cross between The Scarecrow and The Tin Man in The Wizard of Oz.
One minure I feel like I don't have a brain I'm that foggy, the next all my energy is draining away, until I refill my energy can and come back to life as stiff as a board! 🥴
 

fimi

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Oh how gorgeous are those ruby slippers! 😄
 

Auriel

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Thankyou (they got me out of a sticky situation, the monkeys had wings and everything! It was barmy!) 🌪🏡 😅
 

sunkacola

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I have "Fatigue Days". Days when I really cannot do anything. I don't think it's ME (CFS), but rather a part of Fibro. It's unpredictable, and I never know if it will last all day or two days or what.
 

JayCS

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they got me out of a sticky situation, the monkeys had wings and everything! It was barmy!
Auriel- you are correct. Being manipulated & worn down, then giving in results in a downward spiral.
Auriel, thankfully you got me on to Atkinson's image of "Flying Monkeys" as Enablers of Narcissists.
But that fits better to @NoSaint's thread "Get in Line" prompting @Stressedout to make what some people do to us transparent as manipulation, so I took my answer over ▶️ there....
 
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Auriel

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Yes jaycs (I was responding to fimi saying how she feels with fibro tin man and the scarecrow) but defiantly “flying monkeys are very much a part of narcissistic/dark triad abuse , they pick soft enablers who think they are helping and defending the poor mistreated narcissist ??? and also toxic people like themselves who actually enjoy the strange stalking gossiping behaviour 🤪 👿 🧛🏻‍♂️
 

JayCS

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responding to fimi saying how she feels with fibro tin man and the scarecrow
Yep. In the past me too Fibro Tin Man, with several scenarios like these...
 

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fimi

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Hehe!...that excercising class made me chuckle @JayCS!! How true it is!! :LOL:
 

JayCS

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Hehe!...that excercising class made me chuckle @JayCS!! How true it is!! :LOL:
Told it some time before, but the experience was so striking I'll tell it again, if ya don't mind, like an old man always telling the same stories - or just turn a deaf ear: "I really am living proof and live to tell the tale..."

Picture me in my tin suit, lying on the mat. Around me 20 people 10-20 years older then me, doing all the neck and back stretches with a bit of huffing and gruffing. The first time I did as told. After 5-10 minutes at least 3 bigger muscles had cramped several times. Everything including my head aching. Small breaks, trying again and again to "hit my head against the wall to see if it gets any softer". My Ache going up from 3 to 4 to 5 to 6 to 7 - crying point.
I was gonna say they probably appeared to me as on the cartoon like young people, and very supple.
But no, the flabbergasting thing was they were very old, weren't at all supple, and weren't by far as strong as I was and still am.
Next two times I tried "hitting my head against the wall with a pillow in between" - almost same result.
Only when I learnt to keep to the sweet spots, never going so far as to let a cramp or any pain to come up. Had a prescription for 10 2 years ago, already paid for, but still 3 to go... when I have "time".... :rolleyes:. 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.
 

fimi

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But no, the flabbergasting thing was they were very old,

Glad to know I'm not the only one who's been through this!!
My neighbour is almost 90 and as fit as a flea. How I wish I had her energy! 😲
 

Auriel

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I’d love to body swap with an athlete for a week 🥇 🏃🏻‍♀️🏃‍♀️
 
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