Fatigue: late night or early morning type?

[CantThink]

I'm late to reply, but the 'fatigue' I experience varies:

1. Upon Waking - I feel as if my starter motor is broken. It's as if I am calling upon my body to provide me with the resources to start my day and there is nothing there. My brain is foggy and I have vision difficulties (focusing). I'm usually really clumsy and slow. I struggle to talk. I rely upon caffeine to get me started and I have to rest between activities so waking, getting out of bed, washed, getting dressed and eating takes me up to four hours on a bad day and one and a half on a good day. Even when I'm up, I'm like a zombie.

2.Generally - I feel a mixture of coming down with the flu mixed with recovering from the flu, and waking from a GA is a good description - weakness, exhaustion, like a ragdoll with no stuffing and a brain made of cotton wool. When I am forced to push through this I live on adrenaline which then leads to feeling wired and PEM.

3. Sometimes - I get a very specific 'fatigue' and for me it is the worst one of all... It is not something I can push through... I just have to lie down in a quiet room with the curtains closed. This one is the 'feel as if you are dying' experience - it feels to me as if I have been poisoned, and as if every organ is shutting down. It doesn't feel peaceful to me as it feels so unpleasant and I mentally have to cope with it somehow (it's like trying to cope with bad pain - your mind can't ignore it or focus on anything else). I find it very distressing.

Think the difference for me between what I can remember of normal/healthy fatigue is that when healthy, having used up your energy makes you feel tired and not sick - massive difference - like proportionately the difference for a healthy person between their normal day's tiredness versus coming down with something really nasty (to them that difference would be marked). Plus logically you know that after a night's sleep you'll wake up refreshed with a full or nearly full tank of energy again. In my experience I never feel just tired.... It's always accompanied by many other symptoms/feelings and from experience I know that a night of sleep (if I can get one) does not restore me. I just wake up feeling some variation of very ill.

 

[snowathlete]

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.

I had mono really bad for 9 months, then back to school and just missed having to retake the year by doing endless catch up homework. Then about 4/5 months later a relapse for another few months. Then I recovered.
But it was terrible and in terms of illnesses I've had, was the closest to ME. Much worse than flu, which just doesn't cut it for me as a description. Mono is closer. I recall lying on my bed and many hours later feeling uncomfortable but not having the energy to roll over. So I just stayed there.
This may be one reason why people with ME blame EBV because there are similarities in symptom experience.

 

[snowathlete]

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.

I agree and I have some evidence to back it up. I started getting sleep problems as my ME developed. On the day of my ME diagnosis, I almost missed my name being called because I was half asleep in the waiting room.
The doctor who diagnosed me said she was sure I had ME but also wanted to rule out sleep apnea so she referred me for full sleep studies.
The sleep studies showed I had definite problems but no specific sleep condition. This is common in ME patients.
I was given a new sleeping pill which for me worked tremendously. My sleepiness largely disappeared. My fatigue did not.
They often both occur in ME but they are different.

 

[Snow Leopard]

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?

The beginning of a day that should have never started. The day after you have done an exam and run a half marathon.

The fatigue we experience is not the warm drowsiness people experience at the end of a long hard day. I actually like that sensation, but that is not what I experience.

 

[DanME]

I dont want to throw us off topic, but I want to add two things, I experience sometimes relating to ME fatigue and exhaustion.

First, if I get a true cold with a little fever, it feels like the body was able to push trough the constant and chronic pre fluish feeling and I feel quite relieved. I feel truely feevery. My OI symptoms get a lot better, the spaced feeling vanishes and I feel a lot more like myself. I really like that state. But I get less feevery episodes, the longer I am ill. I think a lot of PWME have the same experience.

Second, sometimes I wake up in the middle of the night (mostly after 4 hours) and feel wide awake. Usually this is not the case and I am just groggy. It happens rarely. I stand up, walk around and feel the normal, warm tiredness of a healthy person. Again my OI is lot better and I feel a real connection with my true self. Usually it lasts an hour and I go back to bed. Four hours of sleep later, all my ME symptoms are back. Weird.

 

[Nielk]

to compound the confusion here, the fatigue/exhaustion feeling is distinct when going through PEM/PENE for me. When "overdoing" it, I start feeling a sore throat, shakiness, sweating, nausea, confused in addition to the exhaustion.

 

[Jonathan Edwards]

I dont want to throw us off topic, but I want to add two things, I experience sometimes relating to ME fatigue and exhaustion.

First, if I get a true cold with a little fever, it feels like the body was able to push through ... and I feel quite relieved.

Second, sometimes I wake up in the middle of the night (mostly after 4 hours) and feel wide awake. ... I stand up, walk around and feel the normal, warm tiredness of a healthy person. ... Weird.

I think this might be important and well on track. If there is a mismatch going on then maybe if something else is out of line the brain stem suddenly thinks everything is matched up again - for a bit.

There is an experiment on fish and anaesthetics that goes a bit like this. You can make fish 'go to sleep' with anaesthetics but there is a situation where if you put them to sleep by changing the temperature of their water then an anaesthetic will wake them up.

The post operative situation does seem quite relevant. I hated waking from anaesthesia. I cannot stand the no-mans-land of delirious half-waking. I get a thing where I try harder and harder not to think about thinking about not thinking about what I don't want to think about ... and I cannot even work out what it is I don't want to think about. I realise this and then start thinking about not thinking about ... I would love to sleep but my brain seemed to be terrified of being switched off again - like a drowning man clinging to a log. It cannot cope with the idea of not thinking at all, even if its only thoughts are meaningless circles. It seemed like some basic survival reflex around the reticular formation in the brain stem activated by being switched off without its permission.

But the day after that and for a week or so after major surgery I hobbled around like an old man, or maybe someone with heart failure with 'fatigue', only able to do a little bit each day but because it all made sense I couldn't have been more at ease because the surgeon had given me all clear on the surgical result. I had wound pain and headache and wobbly legs but it was all perfectly in order.

And during mono I remember these little patches of paradoxical relief and wellbeing, often at night, as DanielBR seems to be describing.

 

[MeSci]

I think quite a lot of us feel better in the evenings (I do).

Me too. I have assumed it's because of higher cortisol levels (we tend to have a reverse pattern of cortisol secretion, IIRC).

 

[MeSci]

For me it's more like "getting up way too early" fatigue. Before ME whenever I had to get up in the middle of the night to catch a flight I would have fatigue with that certain sickly quality to it. On the other hand, fatigue at the end of a long day felt more like good kind of tiredness which would sometimes feel almost pleasant. I never get the latter kind of fatigue with ME.

I've had ME for so long that it's hard to remember what it felt like to be well, but that rings true for me.

 

[Jonathan Edwards]

I'm wondering if you've got a specific reason for asking and if so, if you want to do another poll? Wondering if you're trying to tie this in with your ideas about various forms of ME under the CFS umbrella. I realise you probably won't want to prime us at this stage, though!

I didn't start with a specific reason. I just had to get up at 4.00 and thought 'maybe this is a bit what it's like'. I don't think I need a poll in fact, as the comments seem pretty consistent, within Scarecrow's Shakespearian 'many forms'.

But I guess I may have been primed by my conversation with Prof Maria Fitzgerald about how all ME symptoms seem to be packed into the brain stem somewhere.

The other thing is that all this shows how absurd it is to say that a person with a perfectly normal brain structure and biochemistry and no environmental challenge who says they cannot get out of bed or bear the slightest noise is making it up. We have several situations in which that happens. During recovery from anaesthesia I doubt there is any residual chemical change to be found. The brain is just trying to sort out its own signals. If you put 'inverting spectacles' on some people find the slightest head movement intolerable. (The world is upside down and if you move your head left it seems as if you moved it right. )There is nothing wrong in their brain and nothing is threatening them from outside. There is just a mismatch in signals. If in ME there is a mismatch generated either by the way signals are being sent in from the immune system or within the brain stem itself there might be nothing to find on scans or blood tests either.

 

[ukxmrv]

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

Do people with Addison's disease have brainstem involvement that causes their nausea/vomiting or pregnant women with morning sickness?

http://www.nhs.uk/Conditions/Addisons-disease/Pages/Symptoms.aspx
feeling sick (nausea)
vomiting

(I rarely get motion sickness or sea-sickness but from what I can see from other people it doesn't seem the same)

 

[Valentijn]

If in ME there is a mismatch generated either by the way signals are being sent in from the immune system or within the brain stem itself there might be nothing to find on scans or blood tests either.

I doubt that central processing is a major issue in ME/CFS. Primarily because it's what the psychobabblers fall back on when their other escape routes are getting cut off Basically it's on par with of ascribing symptoms to something as vague and undefined as "inflammation".

I also think it is a huge mistake to assume that there is nothing to be found on scans or blood tests. There haven't been many consistent results in that area, but there also haven't been large studies using rigorous diagnostic criteria. Additionally, almost no testing is done with patients on an individual basis in many countries, most especially in the UK where the ingrained message is that testing will harm ME patients.

If there is a central processing or sensitization issue, I think it would have to be one (relatively minor) problem out of many, and I would have trouble imagining how it could be a primary and causative issue. How would dysfunction in central processing result in swollen lymph nodes? How would it result in our rather distinct two-day CPET results? How would it account for muscles twitching incessantly after using them too much?

 

[Jonathan Edwards]

Do people with Addison's disease have brainstem involvement that causes their nausea/vomiting or pregnant women with morning sickness?

http://www.nhs.uk/Conditions/Addisons-disease/Pages/Symptoms.aspx
feeling sick (nausea)
vomiting

(I rarely get motion sickness or sea-sickness but from what I can see from other people it doesn't seem the same)

I think all nausea and vomiting is probably organised for our benefit by the brainstem. I was not actually implying that there was necessarily something wrong with the brainstem itself. It may be detecting a very real mismatch in incoming signals. On the other hand it might have got into its own loop of misreading signals feeding back from its own output.

 

[lansbergen]

I was not actually implying that there was necessarily something wrong with the brainstem itself. .

For the record: I say there is.

 

[Jonathan Edwards]

I doubt that central processing is a major issue in ME/CFS. Primarily because it's what the psychobabblers fall back on when their other escape routes are getting cut off Basically it's on par with of ascribing symptoms to something as vague and undefined as "inflammation".

I also think it is a huge mistake to assume that there is nothing to be found on scans or blood tests. There haven't been many consistent results in that area, but there also haven't been large studies using rigorous diagnostic criteria. Additionally, almost no testing is done with patients on an individual basis in many countries, most especially in the UK where the ingrained message is that testing will harm ME patients.

If there is a central processing or sensitization issue, I think it would have to be one (relatively minor) problem out of many, and I would have trouble imagining how it could be a primary and causative issue. How would dysfunction in central processing result in swollen lymph nodes? How would it result in our rather distinct two-day CPET results? How would it account for muscles twitching incessantly after using them too much?

I agree with a lot of that but I sense a slippery argument at the beginning, Valentijn. Just because a psychobabbler falls back on an idea does not make it wrong, however much it might be annoying to admit it. And I am not sure the idea of the brain stem sensing a mismatch is vague in the way inflammation is. I agree that 'central sensitisation' might be, but I am suggesting something with rather more specific system dynamic implications, I think.

I think I agree with your third paragraph - I had put a specific loop within brain stem as a sort of optional subcomponent in my ME3 idea. Some people like the idea that persistence of ME lies in the brain (Lansbergen does) but I am very much of a mix and match opinion too. But I am pretty sure your brain stem can in fact organise swollen lymph nodes and funny CPET results and twitching if it wants to. There are efferent nerves going pretty much everywhere. Not that I would put my money on it, but it cannot be ruled out.

I did not actually say that there was nothing to find on blood tests and scans in ME. I was pointing out that EVEN IF there was nothing to find it would still be unjustified to say that symptoms were 'psychogenic' because we know the brain stem can generate these sorts of symptoms even then. So 'we can't find anything so you are making it up' cannot be valid. The fact that there might actually be things to find makes it even more absurd, but my point is that it is absurd enough in the first place.

 

[lansbergen]

Some people like the idea that persistence of ME lies in the brain (Lansbergen does) but I am very much of a mix and match opinion too.

If it is what I think it is, you will not find it. Many have tried and still are doing that. What was claimed to be the infectious agent most likely is only a surrogate marker appearing late in the disease process.

 

[Jonathan Edwards]

If it is what I think it is, you will not find it. Many have tried and still are doing that. What was claimed to be the infectious agent most likely is only a surrogate marker appearing late in the disease process.

What do you think it is then? I won't be doing any looking but I would be interested to know why you think it is as invisible as it does seem to be.

 

[lansbergen]

What do you think it is then? I won't be doing any looking but I would be interested to know why you think it is as invisible as it does seem to be.

I will send you links for papers from the professor I think is on the right track.

 

[Sidereal]

Personally, after many years of this, whatever it is, it's morphed into a situation where if I lie around all day for weeks on end doing absolutely nothing I don't feel "chronically fatigued" at all. In fact, there are times when I feel almost normal (only happens in the evening or at night, never in the morning), though there is always a vague sense that something is not quite right. But if I try to do anything (i.e. expend energy), I very quickly run into problems. I literally run out of energy/muscle power, and if I were to foolishly continue what I am doing, I would eventually fall down on the floor (happened in the early days when I had no idea what the hell was wrong with me and I was trying to push through) unless I lie down first and stop moving completely until the crisis passes. (I am not talking about pre-syncope from OI here; that's a different issue.) If I use a specific muscle, the "energy running out" problem can be quite localised, say one arm if I am trying to clean something. If I continue this activity after my brain screams at me to stop, there will be tremulousness, weakness, fasciculations and pain in the muscle which can persist for quite some time.

Dr Ramsay described this (what he believed to be a unique form of muscle fatiguability) well in his book on ME based on his clinical observations long ago. I wish he were still around to see his ideas vindicated via 2-day CPET.

 

[Sidereal]

I doubt that central processing is a major issue in ME/CFS. Primarily because it's what the psychobabblers fall back on when their other escape routes are getting cut off Basically it's on par with of ascribing symptoms to something as vague and undefined as "inflammation".

I also think it is a huge mistake to assume that there is nothing to be found on scans or blood tests. There haven't been many consistent results in that area, but there also haven't been large studies using rigorous diagnostic criteria. Additionally, almost no testing is done with patients on an individual basis in many countries, most especially in the UK where the ingrained message is that testing will harm ME patients.

If there is a central processing or sensitization issue, I think it would have to be one (relatively minor) problem out of many, and I would have trouble imagining how it could be a primary and causative issue. How would dysfunction in central processing result in swollen lymph nodes? How would it result in our rather distinct two-day CPET results? How would it account for muscles twitching incessantly after using them too much?

I agree. I don't think fatigue is central (i.e. originating in the brain) in this disease, nor do I think that the pain occurring in ME/CFS and FM is due to central sensitisation. There are elements of that, sure, but it seems like a relatively minor component compared to the overall elephant in the room problem of inability to produce sufficient energy to meet the demands.

These hypotheses don't make much sense to me. They seem like a rather sneaky way for psychiatry to remain in charge of our "treatment". There was a study for instance that showed that a lidocaine injection into muscles (i.e. peripheral tissue) can reduce FM pain compared to placebo. Why would such a thing happen if the there was no muscle pathology in this disease as Simon W et al keep telling us (and the insurance companies and governments)?

By the way, I don't even think this disease is neurological despite its ICD-10 classification. I personally think this advocacy talking point (which I see repeated everywhere on the internet) is a rather weak one. Yes we have neurological symptoms (and some PWME have additional psychiatric symptoms which are ultimately "neurological" too) but those symptoms can originate from dysfunction that's not primarily in the brain. Metabolic disorders such as mitochondrial diseases, channelopathies, hepatic encephalopathy, Wernicke's encephalopathy etc. etc. can produce altered mental status / cognitive issues of the sort we experience. I think when you separate out what appear to be autoimmune subgroup(s), a good chunk of us will turn out to have problems of this nature.