Myalgic Encephalomyelitis Community
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What IS fatigue?!

Hello all

I'm not being facetious, I'm genuinely curious to try to understand my (potential/not yet officially diagnosed) condition.

How would you define fatigue? Is it a kind of tiredness (e.g. sleepy tired, wanting naps); is it exhaustion (like that heavy tiredness that you'd expect in normal life after a really active spell); or is it just lack of stamina and having no energy to do everyday stuff?

I'm definitely in the third category. I'm rarely tired in the day (not that I'm averse to a little nap, but not out of necessity :) ), it's just that I'm like a car with the petrol gauge on red. There's a very limited supply of energy and unless I'm extremely careful, it gets used up very easily and I crash. But even then, it's not exhaustion as such, it's just that I start to feel very ill - shaky, woozy and terrible nausea.

Just interested to know how other people experience or perceive fatigue. My GP (who is very thorough and still investigating) summarises me as having 'fatigue', I'm just not sure it's that simple.

Any thoughts to share?

Fiona

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I would call my fatigue, having no energy to do anything. E.g. Having a bath then not being able to do anything else.

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Thanks, sounds very much like me!

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Hello Fio1331,

I would describe my fatigue as not being able to do anything and having to sleep for 1-4 hours. I must lay down with my whole body supported. This can be accompanied with sore throat, swollen glands (neck), I cannot tolerate flashing/flickering light or anything other than low sound.

Hope this helps. Take care

Lottie x

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Thank you, it's interesting to see how it manifests for different people. Have a good day x

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You too x

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Surprisingly we do not know what causes fatigue, we associate it with illness and ageing but what triggers us to feel tired and the mechanism that generate that feeling has not really been researched in detail. In fact more research has been done on how to make professional footballers' alertness peak at kick off time and perform for 90 minutes than into fatigue in general sad...

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Ooh imagine having 90 minutes' energy ;)

Yes, it's funny (and not haha funny) what's prioritised in research isn't it? They still don't even really understand sleep from what I've read.

I suppose it partly depends how you define fatigue, as even that is open to interpretation (or at least 'fatigue' manifests in different ways), which takes us back to my question of how others perceive it. Just my personal curiosity!

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Well its obviously a self defense mechanism, however how it works within the brain I don't know. Diet and gut activity which then feeds into the bloodstream and thence the brain obviously has a great impact... be good to understand it though.

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Hi ☺ really good to connect with you all .I'm exhausted atm & struggling to type .I can't lift my arms & have them resting on cushions.I can't handle loud noises or bright lights & feel better being on my own so I don't have to communicate. I'm well aware that I've overdone it lately .I decided if I was gona feel so tired I may as well enjoy life more & still be tired. I am feeling better mentally as I was just existing before but now comes the payback !!

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So hard to get that balance isn't it? Sometimes you do just have to do something and as you say, take the hit after. Take care.

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Sooooo right !! Thanks for reply Fio1331 ☺ Going bowling today - taking daughter & friends .Wish me luck .x

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That's a biggie! Well done. I'm going to a friend's wedding on Saturday. We've pulled out of the reception but I'm NOT missing seeing her walk down the aisle. I've said I'll be there even if my husband has to carry me, lol! (Hopefully it won't come to that - my hat might fall off ;) )

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Good Luck !!A Piggyback could be an option 😅😅 just wear trousers or a V long skirt LOL x

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Made it yesterday, dignity intact ;) Was worth every second of the effort x

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H im on the Fibromyalgia site, have just started following this one ten minutes ago.

Fio i have to say that im just thinking the same thing , What is fatigue,! Ive been really exausted and not much energy x

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Yes I just wonder whether the person with no energy to do anything (but who, like me, isn't exactly tired) and the person who can, for example, go to work in the morning but then has to sleep all afternoon, are classed as having the same thing by the medical profession. It's probably two sides of the same coin, just manifests differently, but it does interest me.

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Fatigue means different things to different people. Is it complete exhaustion or jut feeling tired ??

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My fatigue when bad, makes me feel like my whole body wants to collapse... when I'm already laying down x

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I'd describe it as a heavy tiredness, that weighs down on you like you've got flu. I wake up exhausted. A shower is a major achievement & I'm exhausted afterwards. I can't think straight or retain information so reading books isn't possible anymore. It rules your whole life.

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Thanks for the latest replies, people. There seem to be some common experiences and also some variations, as you'd expect.

I'm especially interested as I don't yet have an official diagnosis. As I said initially I'm more the 'no energy' end of the spectrum as opposed to the 'tired/exhausted' end, so we'll see what the docs eventually decide in due course.

Have a good day everyone x

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Hi Fiona,

From my understanding everyone may experience fatigue differently. I've had cfs/me for 3years now and I would almost say I am all 3 descriptions. Those who say fatigue is just tiredness do not have a clue what it's like to have a crippling, painful level of fatigue. If I have a shower/bath I am unable to lift my arms to brush or dry my hair. If I choose to have a social life for one day a week I.e going shopping, a nice walk somewhere, drinks with friends I run the risk of being bed bound for days and unable to work. Have you done any research on cfs/me because the symptoms are somewhat limitless and you may find an explanation for the nausea, dizziness, shakes and even a "boom and bust theory" not to get too technical but it may help you to understand your energy levels even if you haven't been diagnosed with chronic fatigue.

Hope you find the answers you are looking for and I'm always here if you want to talk more about this!

Thanks,

Georgia :)

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Thanks for your reply Georgia. Yes, I've been doing some reading and you're right - whatever the final diagnosis is, there are all sorts of nuggets of information out there, some of which are relevant and helpful.

But perhaps most reassuring of all is the knowledge that other people understand. I'm so grateful that we have forums like this where we can all share experiences and support each other.

Thanks for taking the time to reply and have a good day.

Fiona x

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Hi,

It sad how little research is done into things & wot gets prioritized,

Sumthing i read as a kid & have seen serval times since, a short sentance to try & explain how ppl with M.E feel

Imagine having the worst hangover ever

A really bad case of flu

& uve just run a marathon

& thats just a standard base line!

I thort it fit pretty well,

Fatigue is beyond ne tiredness

For me its more like muscles & sytems giving out!

Pushed to such extremes that they just start to not work properly

& the more u push urself, the more energy u take from other systems & eventually nothing works properly & everything just gives up!

Muscles shake & just wont work to the point they cant even support themselves & it hits every single system till they just dont work & even start to shut down

Ive noticed this alot with my heart

After activity, on bad days etc

My pulse & heart rate gets very low, sumtimes to the point that ppl & machines have alot of trouble finding it! afterall the heart is just a muscle

The 1st thing everyone thinks of wen fatigue is mentioned, is tiredness & sleep

Altho thats part of it, it really is far beyound tiredness & sleepiness

& to me atleast, is more like uve used every ounce of everything u have & more! Till there is nothing left & every single system in ur body has been so over pushed, they just cant function & start to give out!

Ive had this awful illness since i was 11yrs old, im now 35

& in the last 24yrs

The only change there has been

Is ppls attitudes & the recognition that it is a very serious illness

The term CFS that came about in the 80s, badly hurt M.E as they lumped them together, unfortunately this ment not only did ppl with curable treatable illness get the diagnosis, but ppl that have the far more serve proper M.E, got the CFS diagnosis

The advancment in the last 20yrs in so many other areas of medicine, & yet the only thing that seems to have changed with M.E, is going backwards to once again recognise it as being very serious

Reaserch just isnt fair!!!

Sorry to of gone off topic & covered a few comments in the same answer, i dont mean to b so down about it, just losing hope with everything lately & so sick of fighting for every single movement & everything in life, for wot seems like nothing

Sorry

& thank u for letting me rant/vent

Please dont let the way the world is let u give up hope or give up fighting for the things u want

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