Fatigue: late night or early morning type?

[Purple]

The closest thing I have come up with to explain the fatigue is when you've just woken up from a general anesthetic where they cut a part of your body open.

This is very interesting to me. I have not experienced anaesthesia myself but when someone asked me to describe in detail how the ME feels for me, they told me: "That sounds very much like the state I was in for the first few hours when coming out of anaesthesia after my operation."

 

[minkeygirl]

Imagine you have the worst flu you ever had in your life.

Then imagine you have to run the Iron Man Triathalon with that flu, through quicksand.

Imagine how you'd feel after. That is my baseline. Fatigue? I think not. Getting up too early? I wish I felt that good.

A well person cannot ever know how bad we feel. To compare your having to get up early to drive someone to the airport to how I feel isn't even fathomable and the fact that you even had to ask speaks volumes.

 

[WillowJ]

I agree with the others. Thank you for the question and for trying to understand.

When I got sick, I did go to the doctor and complain of "fatigue" because I didn't really have another way to put it.

There is a little bit of that heaviness associated with the day that shouldn't have started, but it goes much beyond that.

The best way I would be able to describe it would be similar to things already said. It would be like having been on a forced march in bad weather (very hot or freezing, either way just so long as it's weakening, pointless, dehydrating, and the scenery is disorienting: either all desert sand or all snow) for weeks, with no real rest and little food or water. There is none of the high that you get from doing sports or physical labor, staying up all night to study, getting up early to drive someone to the airport, or figuring out a complicated problem or writing a paper.

(However, there are times when we can get a temporary high, like for going to a doctor's visit or social outing, and we look much weller than we feel. I have people tell me I look fabulous all the time, when I am borderline pre-syncope. There are other times when I look visibly ill, though, to a reasonably discerning person, whether because of gait changes or being underweight or whathaveyou.)

Another way I would describe it is to say that all the individual cells in my body feel nauseated.

 

[OverTheHills]

And now a simple question from an ignorant patient. How does the average RA/autoimmune patient describe their 'fatigue'? Is it as varied as the ways we describe ours? I think of ours as multi-dimensional and guess that other fatigue diseases have fewer dimensions as well as less severity in many cases.

I know one RA person and one sjogrens/ME/rare disorder person. The RA person has energy limitations as an important part of her disaease but it seems to limit her in slightly different ways; she certainly doesn't get the same sort of PEM but does have memory problems, IBS and some other symptoms in common with mine.

I agree with many other posters in this thread that a quick and easy way for a doctor to irritate an ME patient is to ask 'how is your fatigue lately'. It gets a consultation off to a poor start, they expect a short simple answer which demonstrates a complete lack of understanding of the disease, and I have to supress my irritation, because I go to the consultation trying to get something other than an argument. But that is for another thread (and we all have plenty of those stories).

I know Jonathan isn't trying to irritate us, but if he is still reading and interested in more descriptions than accumulate in this thread, there is a whole sub-forum on fatigue and at least one old poll where people ticked boxes for the types of fatigue they get.

OTH

 

[Kati]

i was once approached by a MS patient who asked me in which way my fatigue differed from his fatigue. In the end, what's different is that these patients with MS, cancer, lupus, RA, hep C, HIV/AIDS all have a good reason to be fatigued, and they have a diagnosis and we don't, so according to many physicians and decision makers, it makes us unworthy of having a clear reason to feeling so sick. Moreover, since there is no clear reason of feeling so sick, the tiredness that we feel is then compared to benign fatigue that everyone feels at the end of the day and minimized as 'it must not be that bad'.

We've been in this vicious circle for 30 long years.

 

[PDXhausted]

To echo others, it is neither. Although, mentally I'd say it feels a bit like the waking up too early- kind of disoriented and foggy. But physically, its nothing like what a healthy person feels as fatigue. I still use the term fatigue, just for lack of better term, but I consider it more like a cellular fatigue or muscle fatigue that puts a strain on my heart and brain, rather than a tired or exhausted feeling. To my family, I just say I'm crashing, because my body goes into a bad state that I can't come out of without total rest, quiet and dark.

Its interesting how we all find our own ways to communicate this state our body is in when there is no language for it. A large part of my desire for knowing the etiology and mechanism of this disease will be the pure joy of having a simple word or phrase to describe it, so a healthy person could attempt to understand.

 

[Hip]

a quick and easy way for a doctor to irritate an ME patient is to ask 'how is your fatigue'. It gets a consultation off to a poor start, they expect a short simple answer which demonstrates a complete lack of understanding of the disease, and I have to supress my irritation, because I go to the consultation trying to get something other than an argument.

That may be more to do with the fact that ME/CFS patients are easily irritated.

The question of what ME/CFS fatigue is like is a perfectly straightforward and fair one, asked by an interested party, so hopefully people will be able to articulate it.



My answer is the following. Obviously the severity of ME/CFS can vary considerably from patient to patient. ME/CFS is labelled mild, moderate, or severe, and so the depth of fatigue felt will vary accordingly.

A few years ago, my ME/CFS was at the moderate to severe level, and on bad days when my fatigue was at the maximum, it felt like I was just about to expire and leave this body for the next life. It felt that all your life energy had gone, and you were about to expire and die. It is not at all an unpleasant feeling, though, at least for me. It is actually quite beautiful feeling, as if you are about to give up the ghost. In this state, I was always reminded of stories I had read of people close death, like for example drowning, where there becomes an acceptance of death. In these times of extreme fatigue, you almost feel like this, you feel like you are happily accepting the oncoming of death.

Of course, nobody drops dead from fatigue in ME/CFS, but the extreme mental and physical weakness makes you feel as if you might. Usually when I would get to these severe levels of fatigue, I would soon fall asleep, and spent the most part of the day asleep. I would also sleep for 12 to 14 hours at night as well. Not all days were this bad though. I would only get say one or two days like this per week.

Though in the daily experiences of ME/CFS, the symptom of fatigue is closely intertwined with the other major ME/CFS symptoms, particularly brain fog and sound sensitivity, as these both tend to worsen considerably as fatigue levels increase.

Brain fog feels like some kind of dementia, where you are slow to comprehend the world around you. I know one story of an ME/CFS patient who forgot their name when asked for it by an official! That's how stupid you can (temporarily) become with brain fog. Another brain fog story was of a ME/CFS patient who could not figure out why her handbag was brim full with water. After many minutes of consternation, she finally figured out the reason: she had taken a shower just after returning home, and had forgotten to take off her coat and handbag before having the shower! With brain fog, you often have to laugh at your own stupidly.

Brain fog tends to get worse with increased fatigue, so alongside the fatigue, you can simultaneously feel "out of it" in this dementia-like way as a result of the increased brain fog.

Talking and making conversation is particularly hard under fatigue conditions. You don't seem to have the energy to put sentences together. So your replies are often reduced to one word answers, or even just grunts.

Sound sensitivity, which is one of the more unpleasant symptoms of ME/CFS, may also get worse under increased fatigue. Sound sensitivity is hard to explain, but if you have ever heard the scrapping sound of a fingernail on a blackboard when the chalk breaks, and noted how that scrapping sound is extremely grating and gets "under the skin", well, that's how many ordinary sounds feel like with ME/CFS sound sensitivity. Somehow in ME/CFS, sounds seem incredibly amplified in the mind, and seem to penetrate into the inner sanctum of the mind, which is mentally painful.

And the (for me embarrassing) emotional sensitivity and frailty often found in ME/CFS, where patients for example will find it example very stressfully and disturbing to listen to ordinary mild disagreements between people, this emotional sensitivity may get worse when there is increased fatigue.

So fatigue as a symptom does not occur in isolation, but is combined with the worsening of these various other mental and cognitive symptoms of ME/CFS.

 

[adreno]

Morning and afternoon is when I feel worst.

 

[IreneF]

There's a jet-lag quality to the fatigue. Like you really ought to be somewhere else. And everyone's driving on the wrong side. Perhaps that's just because my sleep cycles are seriously disarranged.

Also headachy.

I remember being an exhausted mother of young children, but being able to do what needed to be done. I can't do that anymore. Sometimes I don't have the energy to get off the couch. I think about doing it, but it just doesn't happen.

 

[CFS_for_19_years]

It takes every bit of willpower just to get out of bed in the morning so I can pee and then I have to eat. When I get up around noon it may as well be 4 a.m. because I haven't had any refreshing sleep, even though I know I have been asleep.

It takes every bit of willpower to take out the trash (haven't done that in a few weeks) and it also takes every bit of willpower to empty the sink of dirty dishes and put them in the dishwasher. My kitchen sink is now virtually unusable because of all the dirty dishes stacked in it. I use the bathroom sink to get a drink of water. The dirty dishes have been accumulating in the kitchen sink for about one month. I don't cook. Most of my meals are delivered to me by Meals on Wheels, but I still have dirty utensils and cereal bowls.

One day when I summon up the energy, I will put all the dirty dishes in a box on the floor so I can start rinsing them and putting them in the dishwasher. This will be accomplished in 10-minute sessions because that is the longest I can stand in one place at a time. Between those 10-minute sessions I will rest on the couch.

The exhaustion I feel all day is like I haven't slept in a week and I ache all over.

 

[ukxmrv]

Every morning has been the same for 30 years. I wake up feeling severely nauseous, black spots in front of my eyes and my vision is dark and poor and at a distance, I shake and fall over easily, my responses are slow, I am unbalanced, clumsy and drop things, If I move too quickly I can throw up or faint. Pins and needles in my arms that get worse the more I do.

If someone speaks to me there is a delay in understanding. The written word is incomprehensible. I cannot add digits in my mind or think in a clear way or read a map. Judging distances is hard. Cannot drive or understand how to operate a car.

My limbs are encased in concrete and moving takes a conscious choice and effort to drag them along. I need to concentrate to think and to hear and to move. I feel as if an elephant is sitting on my chest.

Cannot multi-task. I am physically weak and cannot repeat a motion such as brushing my hair. I need to get put of bed of pulling myself on furniture I have placed near the bed and the door. If I sit down I need to grab something to be able to pull my body up to stand again. If I sit on a chair without arms I can fall out of it.

My blood pressure is low and my body temperature is low. I feel cold. My bones feel cold and ache. Sunlight hurts my eyes and if it is strong outside hurts my skin. Increases the nausea. I am cold but never shiver. Early on I noticed that I had stopped shivering in rain. I stopped yawing as well.

My "spirits" are fine. If there is a pleasurable reason for my early start then I am happy and excited but the morning symptoms are the same awfulness.

Then as the day progresses the nausea goes and all the other severe morning symptoms lessen. By the evening I can feel almost normal and have a period of being able to function better physically and mentally.

Then repeat every day. Closest pre-ME experience that feels like this would be a hangover whilst having bad jetlag and a medical operation under GA. None of my pre-ME physical things are even close such as my cross country long runs or intense tennis or horse riding. I had pneumonia once before ME and there's a dash of that as well. Plus a terrible flu. My partner ran the London Marathon and felt better the days after that than I did without the running.

I do remember tired. This isn't it.

The morning symptoms start at around 5-6am. At 4am if I get out of bed I don't experience the morning symptoms until a hour or two later. If I stay awake over night I feel better at 7am than if I had slept. Reason I am writing this now.

So if I needed to get up at 4am to drive somewhere I would still be in the "good zone" of my day and best able to cope.

It makes no difference sleeping until 7, 8, 9 until 10am. If I sleep until 11am I feel better and don't experience as many of the "morning" symptoms. I am stronger and achieve more in that day.

If I get up each day at 7 or 8 or 9am for a week, month, year etc the morning symptoms don't get any better. They get worse. I also get more ME viral symptoms (sore throats, glands) the more early morning starts I have. The more early morning starts I have the more they intrude into the day time-wise and eventually my evening functioning time will disappear.

Dr Ramsay described how his ME patients had these times of the day when they could cope better. It's how he was able to separate his ME patients from his TATT ones,

 

[Sasha]

Perhaps I can address this slightly differently. Back in my clueless days (early 90s) when I thought exercise would work, I went on a graded exercise program, jogging. (This was not the only time ... I am stubborn, and kept trying, more and more carefully, but it never worked longer than a short time. I was also only a mild patient back then.)

For the first few times, very short runs, while I was slowly building up, it was OK. Tired, fatigued, yes, no great issue. Then all of a sudden, on the next "run ", I could not break out of a walk. There was NOTHING there. No oomph. If I tried to go into a slow jog I just staggered to a halt.

Same here - I got sick with acute viral onset and at the three-months point, tried to go for a short jog. All I could do was lift my legs a bit higher but still at walking pace. Nothing in the tank.

I also second the point made about repetitive movements of the arms being especially tiring. I've heard a lot of PWME say this. I can't clean a bath or polish shoes because of that. I've no idea what the mechanism would be behind that.

 

[justy]

http://info.sjogrens.org/conquering-sjogrens/bid/342548/13-Types-of-Sjogren-s-Fatigue

All of these above.

But I also agree that the term fatigue is wooly - its connotations are tired or sleepy, whereas my fatigue which is relentless (worse up until lunch time, better slightly in afternoon, worse again by early evening, awful by 7 pm) has a sickly illness foggy fluish painful feeling to it that neither getting up too early or doing a hard days work fatigue contains. My joints ache and my head and eyes just feel nasty - skimming just through this thread and replying is enough to up the intensity of this feeling.

For me these feeling can be lessened until I feel halfway decent if I rest in bed for hours and days at a time. Then of course I get up because I finally feel like I have enough gas in the tank, only to find the tank is rusted through and the fuel runs out the bottom.

 

[OverTheHills]

OverTheHills said: ↑
a quick and easy way for a doctor to irritate an ME patient is to ask 'how is your fatigue'. It gets a consultation off to a poor start, they expect a short simple answer which demonstrates a complete lack of understanding of the disease, and I have to supress my irritation, because I go to the consultation trying to get something other than an argument.

That may be more to do with the fact that ME/CFS patients are easily irritated.

The question of what ME/CFS fatigue is like is a perfectly straightforward and fair one, asked by an interested party, so hopefully people will be able to articulate it.

@Hip, I see I have been unclear.

I'm thinking of a specialist I see quarterly who knows I have had a disabling condition he calls fatigue for 10 years and seems very much not interested in a more detailed answer than better/worse/same every time he asks that.

The imprecision of his term fatigue irritates me, although there isn't a commonly accepted better one. Also I don't think a patient with cancer would be asked, 'hows your lump today' by their oncologist.(I'm not trying to be insensitive or about cancer here).

I would like him to appear interested and knowledgeable about my condition, but perhaps I am just easily irritated by medics.And perhaps I am just grumpy tonight.

OTH

 

[Jonathan Edwards]

Wow, brilliant, I am going to have some homework to do with all these answers. It really begins to give me the idea I think.

And I can't help laughing at Sushi's story with Gingergrrl:

and @Sushi, why were you trying to carry a bucket of rocks?!!!

 

[Sasha]

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.

 

[Sasha]

Wow, brilliant, I am going to have some homework to do with all these answers. It really begins to give me the idea I think.

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!

 

[Helen]

A doctor told me that from his experience PWME are the only ones of his patients that are more tired when they get up in the morning than when they go to sleep.

Waiting with excitement to hear more about your idea!

 

[Jonathan Edwards]

I am going to make some random quickie comments first as I go through (backwards for some reason).

And now a simple question from an ignorant patient. How does the average RA/autoimmune patient describe their 'fatigue'? Is it as varied as the ways we describe ours? I think of ours as multi-dimensional and guess that other fatigue diseases have fewer dimensions as well as less severity in many cases.

I agree with many other posters in this thread that a quick and easy way for a doctor to irritate an ME patient is to ask 'how is your fatigue lately'.

I know Jonathan isn't trying to irritate us, but if he is still reading and interested in more descriptions than accumulate in this thread, there is a whole sub-forum on fatigue and at least one old poll where people ticked boxes for the types of fatigue they get.

OTH

RA patients never mentioned fatigue to me. It was only when TNF inhibition came in that they told us that the first thing to improve was 'exhaustion' or 'fatigue' or something like that. I had always known that PWRA were exhausted and sometimes we would discuss the need to sleep in the middle of the day but it was rarely mentioned even if it was a huge problem. I am getting to think there is an important reason for this.

If you have RA it is obvious to you as a person why you are exhausted. You get no sleep with pain from swollen joints and everything requires intense effort to avoid yet more pain. I think it is also 'obvious to the body', which may mean to the hypothalamus and brain stem. There is no 'mismatch'. There is also no mismatch in the social interaction with the doctor - he can see why you are exhausted too and so you both get on with trying to deal with the cause - the pain and swelling. I sense that in ME that an integral part of this cluster of problems that isn't really fatigue but has no other name is some sort of mismatch - even the hypothalamus can see that and maybe that is why it feels the way it does. I will come back to this when I have read more posts I think.

Thanks for the pointer to the other thread. I will look at the too.

 

[Jonathan Edwards]

Another little thought. So maybe Julia Newton is wrong to say all fatigue is the same?