Allyson
Senior Member
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- 1,684
- Location
- Australia, Melbourne
MY own thoughts the "fatigue" in EDS/POTS/OI/ME /cfs - for what it's worth is that it may not be fatigue.
After much reflection ( inspired by input and discussion from excellent doctors and others - for which thanks!) I think it is a combination of
1. desire /need to be recumbant- horizotantal rather than vertical plus
2. after exertion:
a) muscle aches and
b) crash symptoms like brain fog as as the mild extreme and severe crash as the far extreme - ie the payback of effects of lack of blood to heart/bain/lungs / muscles in the vertical time.
(and late edit - 3. exertional dyspnoea - getting out of breath easily - probably adds to the picture.)
I noted the distinction once i started D- ribose - that totally stopped the constant muscle aches that had made it feel like fatigue - when i stay recumbant for long enough i have no symptoms (except usually - the urge to stay recumbant).
When i go vertical for any signnificant amount of time the symptoms recur.
I have not considered limb heaviness as i do not get that.
And flu like symptoms Cort mentions for me come as part of the severe hangover-like symptoms af a really severe crash. (Which i can predict the onset of now - i can induce a crash simply by staying uright for, say, max 4 hours in a day..... or to be sure two days in a row....no exertion needed.)
"Tired but wired" feeling likewise - this is just my thoughts but i think it is due to excess adrenalin in the system from the upright time (the upright time causing lack of blood suply to the brain is in the 2011 consesus criteria doc; the adrenalin release WAS explained to me by a senior medico who asserts it is released in a n attempt to cause vasoconstriciton to ensure adequte blood to upper extremeities exp brain and heart) and activity during the day bulding up in the system; the constant adrenalin release is going to imact on the muscles too - that is my guess.
usually we secrete extra adrenalin for flight of fight which " uses it up or burns it off" and as we do neither (arguing with strangers on the internet does not count) - it is not dissipated
Just really thinking aloud her folks so would appreciate any feedback or thoughts .......
post script - i had another episode yesterday that reminded me of anothrer kind of crash or fatigue - this happens to me every couple of months or so .... i had done nothinng exceptional for a few days so should be stable; I did get up at 8 am yesterday but was resting on couch most of the day.
About 7pm i get strong urge to collaple/ sleep/ go to bed - but not a normal "feel tired I need a nap" feeling. More like evrything shutting down and you feel awful and feel rather like "this is what dying would feel like". I did not go up to bed as our cat who is old wanted company but I lay as flat as I could on the couch; maybe I got eventually got to sleep for a few minutes and after about 2 hours of lying there i felt OK again. WOuld not be able to do anythig in that time.
It could not be PEM - and was nothing like it in effect or duration - as i had not done any thing to cause that.
A similar thing to if you have been up doing stuff for a while then "crash " or run out of energy and have to lies down - but more severe, you have no option, and in this case i had not been upright or doig anythin new or stressful - on the laptop on couch most of the day and previous coule of days..
All in all I think we need to defind our different forms of crashes and "fatigue"
thanks
Ally
After much reflection ( inspired by input and discussion from excellent doctors and others - for which thanks!) I think it is a combination of
1. desire /need to be recumbant- horizotantal rather than vertical plus
2. after exertion:
a) muscle aches and
b) crash symptoms like brain fog as as the mild extreme and severe crash as the far extreme - ie the payback of effects of lack of blood to heart/bain/lungs / muscles in the vertical time.
(and late edit - 3. exertional dyspnoea - getting out of breath easily - probably adds to the picture.)
I noted the distinction once i started D- ribose - that totally stopped the constant muscle aches that had made it feel like fatigue - when i stay recumbant for long enough i have no symptoms (except usually - the urge to stay recumbant).
When i go vertical for any signnificant amount of time the symptoms recur.
I have not considered limb heaviness as i do not get that.
And flu like symptoms Cort mentions for me come as part of the severe hangover-like symptoms af a really severe crash. (Which i can predict the onset of now - i can induce a crash simply by staying uright for, say, max 4 hours in a day..... or to be sure two days in a row....no exertion needed.)
"Tired but wired" feeling likewise - this is just my thoughts but i think it is due to excess adrenalin in the system from the upright time (the upright time causing lack of blood suply to the brain is in the 2011 consesus criteria doc; the adrenalin release WAS explained to me by a senior medico who asserts it is released in a n attempt to cause vasoconstriciton to ensure adequte blood to upper extremeities exp brain and heart) and activity during the day bulding up in the system; the constant adrenalin release is going to imact on the muscles too - that is my guess.
usually we secrete extra adrenalin for flight of fight which " uses it up or burns it off" and as we do neither (arguing with strangers on the internet does not count) - it is not dissipated
Just really thinking aloud her folks so would appreciate any feedback or thoughts .......
post script - i had another episode yesterday that reminded me of anothrer kind of crash or fatigue - this happens to me every couple of months or so .... i had done nothinng exceptional for a few days so should be stable; I did get up at 8 am yesterday but was resting on couch most of the day.
About 7pm i get strong urge to collaple/ sleep/ go to bed - but not a normal "feel tired I need a nap" feeling. More like evrything shutting down and you feel awful and feel rather like "this is what dying would feel like". I did not go up to bed as our cat who is old wanted company but I lay as flat as I could on the couch; maybe I got eventually got to sleep for a few minutes and after about 2 hours of lying there i felt OK again. WOuld not be able to do anythig in that time.
It could not be PEM - and was nothing like it in effect or duration - as i had not done any thing to cause that.
A similar thing to if you have been up doing stuff for a while then "crash " or run out of energy and have to lies down - but more severe, you have no option, and in this case i had not been upright or doig anythin new or stressful - on the laptop on couch most of the day and previous coule of days..
All in all I think we need to defind our different forms of crashes and "fatigue"
thanks
Ally