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Fatigue: late night or early morning type?

Jonathan Edwards

"Gibberish"
Messages
5,256
And I see Kati did my answer already but I think it may be interesting to focus on the brain stem seeing no reason why, like in vestibular neuronitis when you get nausea because it cannot understand the messages. The doctors are a lost cause anyway!
 

Mij

Messages
2,353
Those of us who have been ill for 20+ years have experienced many of the experiences put forth, it applies to many of us at various stages but changes over the years. I think that would make it difficult to compare and place us into categories.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
I think another common element to our fatigue is that there's no element of sleepiness about it. That's the case for me, at least, and I have the impression that it's also that way for most of us.

Yes, I so miss the luxury of feeling sleepy and tired! I lost that abruptly Easter 1982 when this illness suddenly hit me for six. It is tortuous feeling profoundly, bone-achingly sick-exhausted and not be able to escape into sleep. The exhaustion for me also seems to especially affect the heart as it becomes so slow as the power supply fails. It feels as though it doesn't have the energy to keep beating. The only way I find to gain some relief is to lie mostly on my front supported by my right shoulder. Horrid feeling!
 

Forbin

Senior Member
Messages
966
If someone with ME had tried explaining the feeling to me before I became ill, I would not have understood.

The closest thing I can liken it to is the feeling you get as you're coming down with the flu - not even the flu itself, but rather more like that brief period of hours when you can feel the "war" of the flu commencing. Everything you do just makes that feeling worse. That feeling of "flu onset" is normally brief and quickly supplanted by standard flu symptoms, however, in ME (at least for me) that feeling of "immune activation" is endless. There are a legion of other ME symptoms, but that's what I regard as the "fatigue" of ME.

It's not a feeling that healthy people easily remember or appreciate except when it's happening to them. So, I would say to someone who wants to know what the "fatigue" of ME feels like, "I can't explain it to you now, but wait until the next time you're coming down with a really bad case of the flu - and then imagine that feeling persisting for years."
 
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Sasha

Fine, thank you
Messages
17,863
Location
UK
Another little thought. So maybe Julia Newton is wrong to say all fatigue is the same?

I had thought that she had said that there were different types of fatigue but that people with primary biliary cirrhosis (?) experienced the same types (not single type).

I might have that all wrong, though - when I went to look that up a while back, her statement didn't seem as clear as I'd remembered it.

Has anyone got a link/reference? I had the impression she'd done some sort of survey of both patient groups but perhaps that was my wishful thinking.

If she was on the boards like you are, we could just tag her and she could join in the discussion! I hope that more researchers will follow your example and come here.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
What fantastic replies, I can't read them all but the ones I have were just great. FWIW I also would never list fatigue as one of my symptoms. @Sushi #10 - oh yes me exactly, not fatigue, ill, poisoned feeling, stabbing head pain, facial palsy etc etc. Mornings worse as the liver tries to get rid of the toxins stored overnight. Moving stirs the lymph to help, so feeling less poisoned as the day goes on. Energy level lifts slightly, enabling small tasks to be done.
Of course not real energy and trying to walk more than a few yards gives that legs full of lead feeling, like dragging dead tree stumps around.

I've read these descriptions so many times, no wonder the CFS label irritates so many.
Now if only GPs and all the NHS staff who deal with ME/CFS patients read these replies too. Maybe it would help change their perception of this illness.
Thanks to JE for starting this thread.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I totally get it that getting up at 4.00 am is nowhere near the issue. But several people seem to think it has something of the flavour. And at 4.00 I certainly feel mismatch. My body is the caretaker saying 'No, it is more than my job's worth unlocking the doors at this time in the morning, get back to bed'.

And in relation to brain fog, I wonder if this is part of the caretaker in the brain stem saying to the cortex 'And the one thing you are not allowed to start doing is thinking anything complicated, we have enough to do sorting out the mess you have made of the clocking in machine.'
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I had thought that she had said that there were different types of fatigue but that people with primary biliary cirrhosis (?) experienced the same types (not single type).

I might have that all wrong, though - when I went to look that up a while back, her statement didn't seem as clear as I'd remembered it.

Has anyone got a link/reference? I had the impression she'd done some sort of survey of both patient groups but perhaps that was my wishful thinking.

If she was on the boards like you are, we could just tag her and she could join in the discussion! I hope that more researchers will follow your example and come here.

I don't think we should hold Julia to anything too dogmatic. She was expressing an opinion at IiME9. But I think she did imply that she thought fatigue in ME was similar to that in PBC or MS or heart failure.
 
Messages
15,786
A simple question from an ignorant doctor. I got up at 4.00 to drive someone to the airport. That set me wondering. Is the fatigue of ME like the end of a long hard day or more like the beginning of a day that should never have started yet? For me the second type is more unpleasant.

Or is it like neither of these?
I have a lot of problems with the "F" word. It's too vague and general, and we have too many distinct sources causing too many different types of fatigue.

I don't get generic fatigue. If I stand up too long (or sit up too long), I can get orthostatic intolerance (OI). My oxygen levels drop, sometimes my muscles tense to try to compensate, and my heart rate rises. If someone isn't familiar with what being a bit oxygen-deprived and light-headed feels like, they often call this fatigue.

If I over-exert, I get short term OI exacerabtion and light-headedness immediately. And a day or so later, I get PEM, which is also often described as fatigue before people learn of a better context in which to describe it. That "fatigue" is most like having a severe flu, where doing anything is very difficult both physically as well as mentally, as it's often hard to think clearly enough to plan and execute even simple tasks. Things that are usually easy and obvious like making a simple dinner can leave me baffled about where to even start. And there's typically full body pain, regardless of whether just one or two muscles were used during the over-exertion.

So I can't say that any part of ME which I have bears much resemblance to the fatigue of a too-early wake-up, or staying up too late after a long day. It feels like oxygen-deprivation and the flu.

On a related note, this is why I really hate the obsession with "fatigue" in ME/CFS research. Instead of breaking down fatigue and analyzing the components and causes of it, it all gets thrown into one big messy pile. This is also why most of us push so hard for PEM to be a core component in studying the disease. It's a specific cause of symptoms which is relatively unique to ME/CFS, and it's a rather precise type of "fatigue" which presumably has a similarly unique and hopefully relevant cause.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
I totally understand the mismatch feeling, for me when I was well, that was a feeling I would have when suffering from eg. jet-lag, brain out of step with body, a bit disorientated sort of, or perhaps after staying up all night with my dogs (whilst whelping) I'd have an hours sleep and then get up, feeling not quite right but would have no problem getting through the day, perhaps not able to do a 300mile drive but okay to function at what I would consider a normal level.
Yes very much a brain not happy with the body.
It would be difficult to relate that feeling in isolation to how I feel now though, too too much else wrong with overall physical functioning.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I totally get it that getting up at 4.00 am is nowhere near the issue. But several people seem to think it has something of the flavour. And at 4.00 I certainly feel mismatch. My body is the caretaker saying 'No, it is more than my job's worth unlocking the doors at this time in the morning, get back to bed'.

And in relation to brain fog, I wonder if this is part of the caretaker in the brain stem saying to the cortex 'And the one thing you are not allowed to start doing is thinking anything complicated, we have enough to do sorting out the mess you have made of the clocking in machine.'

What was it like in specific symptoms Prof Edwards at 4am

(i.e. yawning, tiredness, problems with motor function, sensitivity to light? etc)
 

Artstu

Senior Member
Messages
279
Location
UK
Can this be done again with a simple poll? I've not read any of the thread.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
And the one thing I remember about my post - mono fatigue was the sense that it was so unfair that I wanted to go and paddle a boat but I could not even get it off the rack without feeling ill - just so unreasonable, so uncalled for. Five months earlier I would have been overjoyed to be able to get downstairs in my pyjamas and watch television rather than spitting out saliva it was too painful to swallow.
 
Messages
1,446
.
In an interview with BBC news about tiredness and fatigue in Britain, Dr Brian Marien (CBT specialist, who was clinical Lead of Sussex CFS Clinics at the time,) stated that 25% of people in Britain suffer from fatigue. The BBC News programme focussed on the tiredness of commuters.

Well, I had commuted in and out of London for work (though years before before ME, not at the time of onset) and yes, it’s tiring, and clearly a widespread problem in Britain, but not in the same universe as the illness ME.

Fatigue is not all the same. Fatigue is a word that is so generalised and applied to so many diverse states that it’s deeply unhelpful to describe the very extreme conditions in ME as fatigue at all.

Total immobility, being unable to move anything other than eyelids was not at all unusual in the years I was
very severely ME sick. And yes, empty batteries/empty petrol tank is a good analogy.

It doesn't take much now (year 20) to be back in, if not the absolute worst state of Very severe, but flat out horizontal with distinctive pallor, loss of language processing and physical co-ordination (typing is out of the question then). The cognitive dysfunction with Post Exertional states is profound.
The loss of language processing in the first 5/6 years was a very early symptom, and profound.
.
 
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lansbergen

Senior Member
Messages
2,512
And I see Kati did my answer already but I think it may be interesting to focus on the brain stem seeing no reason why, like in vestibular neuronitis when you get nausea because it cannot understand the messages. The doctors are a lost cause anyway!

Yes, the brainstem is an issue. I say it is inflammed and I have no doubt it is infected in my case.