Tiredness Vs Fatigue - Are they being confused, and is that the big problem?

[Forbin]

I would just echo that - in my opinion - the 'fatigue" or "tiredness" that a healthy person experiences is not really analogous to the feelings one has with ME. I'm not sure that there is a specific word that captures it, but "malaise" is closer.

I never experienced this feeling before getting ME... except, perhaps, when I was fighting an acute viral infection. Even then, it is hard to say if they are exactly the same, because usually a "flu" is a relatively transitory experience and you may spend a good deal of it sleeping or in a semi-conscious state. ME is like a flu that never ends, and no matter how much you sleep, you'll feel this "malaise" every moment that you're awake. It gets worse if you exert yourself, but it's always there.

This is a pretty difficult concept to convey to a healthy person.

In trying to find the symptoms of something similar, I ran across the symptoms of primary altitude sickness.

It presents as a collection of nonspecific symptoms, acquired at high altitude or in low air pressure, resembling a case of "flu, carbon monoxide poisoning, or a hangover."
https://en.wikipedia.org/wiki/Altitude_sickness

Gastrointestinal disorder: Loss of appetite,nausea, or vomiting,excessive flatulation
Nervous system disorder: Fatigue or weakness, headache with or without dizziness or lightheadedness, insomnia
Locomotory system disorder: Peripheral edema(swelling of hands, feet, and face)
Respiratory system disorder: Nose bleeding, shortness of breath upon exertion
Cardiovascular system disorder: Persistent rapid pulse
Other: Pins and needles, general malaise
https://en.wikipedia.org/wiki/Altitude_sickness#Primary_symptoms

Obviously, there are differences, but imagine those symptoms being described as a group as simply "tiredness" or "fatigue," or a "fatigue syndrome."

ME might be described to a lay person as something like an altitude sickness that you can never adapt to - and with no known way down the mountain.

 

[Barry53]

Let's not make the word "fatigue" anything other than what it is: a synonym for tiredness.

Well maybe I'm confusing sleepiness for tiredness, because I went through several years of feeling extremely/abnormally sleepy/unwell (or as I would say tired/unwell), without feeling at all fatigued ... and have never felt myself to have ever had ME. But I strongly suspect that some similarly aflicted folk may be getting misdiagnosed as having ME, and thereby apparently recovering it. My original linked post gives more detail.

It's not really about the words (shouldn't be anyway), but it's about a different kind of conditions that maybe get misdiagnosed as ME.

e.g.1: When I had my problems, if had ever felt myself in some danger, I would have been able to scoot away from it like a shot.

e.g.2: A year or so back my wife (who does have ME) was in the garden and our son was in his shed working. Something happened that sounded as if our son was in big trouble and was hurt (thankfully as it turned out he was not, but my wife did not know that at the time). She instinctively started running toward him, but after a couple of steps she said it was if she hit a wall, and just stopped dead and couldn't move. A mother urgently trying to get to her son she thinks is in trouble, but her body just would not do what her brain was desperately telling her to do.

But I'm pretty sure that many of the BSP crowd are not distinguishing between such symptoms. It's not the word but the illness.

I know you know all this, not trying to preach - just clarify what I mean.

 

[TrixieStix]

@Jonathan Edwards: If you wouldn't mind, I'd be grateful for your thoughts on this please.

I'm not qualified to comment from a medical perspective, but from my own personal experience, tiredness and fatigue, though they can have a strong correlation, do not seem to me to be the same thing at all.

As I see it, tiredness is when your brain is telling you you need to sleep. Of course fatigue can, and typically is, a common trigger for your brain to do this - but not the only trigger surely. I commented on this in ...

Incidence of ME/cfs in a large prospective cohort of U.S, post #7

... that there were periods many years ago when I used to suffer from quite severe tiredness, but not fatigue.

I cannot help wondering if this is where a lot of confusion lies. I notice that quite a lot of research talks about the brain signalling fatigue, but how do researchers actually know if it is fatigue or tiredness that is being signalled? Is there a definitive objective test for this? Or is it back to patient questionnaires again?

If it is questionnaire based, is a subject, or even researcher, necessarily going to know if the subject is really feeling very tired? ... or very fatigued? The two things can be ever so difficult to discriminate between. Indeed I suspect many patients (maybe researchers?) do not realise they are different. So are these researchers really researching people with fatigue at all, or potentially people with a condition that makes them feel extremely tired, even if they are not actually fatigued? And if their problem is tiredness rather than fatigue, but everyone involved in such trials believes they are researching fatigue ... no wonder it's all such a mess.

I'm guessing that fatigue is very much about lack of useful energy being available where it is needed. No matter what a person's brain might tell them to do, they cannot defy the laws of physics and drum up energy that is not there. This feels to me the situation for ME sufferers.

And I'm similarly guessing that tiredness is when your brain is telling you to sleep, irrespective of what useful energy your body may, or may not, have available. And maybe there are some conditions where a person's brain is insisting they feel tired, even if there is no apparent need. I wonder if this is where some misdiagnosed cases of ME occur.

I mean - if someone feels very tired, but a questionnaire asks if the feel very fatigued, are they going to say Yes or No? And if some time later, they feel much less tired, and they are asked if they feel more/less/same fatigue as before, they are surely likely to say they feel less fatigued. Whereas in such a case, they would be really be less tired, but neither the subject or the researchers would know any different.

Is asking about fatigue, actually a leading question that assumes fatigue, when it is not really known if the problem is tiredness or fatigue?

And is the distinction between tiredness versus fatigue properly recognised?

makes sense to me, but rather than "tired" vs "fatigued" it seems you mean "sleepy" vs "fatigued" and indeed they are very different feelings for me.

 

[Hilary]

I would agree with @Forbin that malaise is a better word (although still inadequate) - there's clearly an implication of unwellness whereas fatigue and tiredness are both terms that perfectly healthy people can quite reasonably lay claim to - which then leads on to the perception amongst far too many people that there's not really that much wrong with us apart from being chronically tired..... if only.....

The adoption of the term CFS has caused so much damage - @Snowdrop I think we're all justified in having a whole hive of bees in our various bonnets

Fatigue, tiredness, malaise, exhaustion etc etc - all far too subjective and wholly inadequate. I agree with @slysaint that an abstract term might be preferable as I don't think there's any way to encompass the multiplicity of symptoms or the massive impact of the disease in fewer than half a dozen words. What a bummer..