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Fatigue: late night or early morning type?

Gingergrrl

Senior Member
Messages
16,171
Malaise sounds like something out of the 19th century fainting couches era, like a lady wearing a corset that's laced a bit too tightly. For me "crash" is the only word I feel adequately captures my PEM experience.

Exactly and that is why I hate the word "Malaise" but didn't explain it as well as you did!
 

snowathlete

Senior Member
Messages
5,374
Location
UK
It makes sense to me. It sounds a bit like my old laptop. Even if I charge it up it runs down in no time now. Maybe these are two different aspects though? Running on low AND small capacity even when 'recharged'. And this time lag thing where you pay the price a bit later, or not until you have done a certain amount, does seem interesting. I guess there are several possible explanations but I suspect there is one that fits better than the others. I do have to admit to a certain amount of information overload here!

Not wanting to overload you with more information but all the talk of batteries triggered some memories.

Back in the 'old days', when I was a lad getting up early in the freezing cold to deliver papers for £1 a day, I carried a tape player and of course, as they actually had to turn the cassette tapes they took a lot more power than modern MP3 players. I always used to be running out of battery power and often carried spares, but at times forgot. When that happened I had a few tricks to get that last bit of life out of the batteries. Swapping them around sometimes worked for a little while. Then when it got more desperate I could leave them for five minutes and miraculously I might then get another few minutes of juice out of them when I turned them back on, but they would do things like play at a slightly slower speed, which made the music sound funny. Then when I got really desperate I'd switch it to radio which required less power, but the signal wasn't great. When that died I had to walk on in silence. When on low batteries I also avoided any rewinding or fastforwarding of tapes as this really used up the juice. So i really had to adapt my behaviour to manage the energy and get the most out of it.

But if the next day I had forgotten to replace or recharge the batteries, I'd turn it on and I'd have a couple of minutes of magic juice that had appeared from somewhere, and I wouldnt remember that I needed new batteries till I'd walked a little bit down the road from my house then it would die on me, I'd remember, and annoyingly have to walk back home to get new batteries.

I don't know how this is relevant really, but it came to mind when I thought about my ME batteries being low. I guess with ME, maybe its like this all the time, that at best I am running on miniscule amounts of power each day and just trying to get something functional out of what I have left, having to pick carefully what I do and dont do. The batteries never get properly recharged. I'm just running on residual power.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

A word that comes to my mind when I have PEM is 'grotty'! (Maybe unknown in the US?)
 

Gingergrrl

Senior Member
Messages
16,171
@snowathlete That is a really good analogy and I also used to use a cassette walkman with batteries!

My husband compares my CFS to a book of matches (he did not create the analogy but adapted it for my situation.) That when I wake up, I have only a certain number of matches in the book to use however I want. Some days for whatever reason, I have more matches to start with and some days I have less. But once I use up the matches, they are gone, so I have to be very selective.

I can choose to do laundry or if lucky I can choose to drive myself to a doctors appt. But I no longer have the freedom to just go about my day and do whatever I want/need as I did pre-CFS. If I do too much (which would be considered minimal to any normal person) then I pay the price for days to come. Sometimes, if something is extremely important, I can push myself to do it anyway and paying the price is worth it whereas other times it is not and I regret it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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.

I'm not sure whether this is generally true. Most of the replies here don't suggest irritation or irritability. I don't think I'm often irritable.

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.

I've never felt like that.

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.

I wasn't far off death a couple of times due to severe hyponatraemia (blood sodium 115 mmol/l), and I can't think of anything that could have caused it other than overexertion, compounded by the probably-lesser effects of my ACE inhibitor. I only had hypersomnia at times in the early stages. Now the more common problem is not being able to get enough sleep, and my tiredness tends to correlate with my illness which in turn correlates with sleep difficulty.

Brain fog feels like some kind of dementia, where you are slow to comprehend the world around you.

I don't know what dementia feels like, but my brain fog feels like metaphorically trying to swim through treacle (think molasses, US readers!).

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.

I don't think I ever grunt! But yes, conversation is very tiring and sometimes my brain just stops being able to do it. I have printed an A5 sheet explaining briefly to visitors what my problems are and how they can help me. Didn't work with the last one, who did exactly the wrong thing and finished her anecdote, thus obliging me to keep struggling to understand her, and announced that she was leaving, obliging me to try to switch to the politest 'goodbye' mode that I could manage, and leaving me exhausted and confused. :rolleyes:
 

PDXhausted

Senior Member
Messages
258
Location
NW US
A word that comes to my mind when I have PEM is 'grotty'! (Maybe unknown in the US?)

Haha, yes thats a good word, I hadn't heard it before. There are lots of synonyms for "I feel like crap", but that doesn't really explain the actual feeling to anyone.

I meant a scientific explanation for the mechanism. For example, in MS, before they figured out what was happening, they might have described symptoms as things like nerve pain, muscle problems, fatigue, etc. but I'm sure none of those really encompassed what it feels like to have MS. Now someone could say, "well I have MS which means my immune system is attacking and destroying the coating on my nerves" and even though I still have no idea what that feels like, I can imagine how horrible that must feel.

I can't wait until we have that. I try and explain sometimes now "it feels like the oxygen is not getting into my cells", but I have no idea if that is actually what is happening.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
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,

That definitely seems to fit the 'reverse cortisol secretion' pattern to me.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, 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.

I do get what I call 'sleepy attacks' when I feel very sleepy and have to close my eyes - but absolutely can't sleep. Really frustrating. Luckily they don't usually last long.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
Interesting points from MeSci and others about sleep/sleepiness

I find my sleep issues do not correlate completely with my energy limitations. When I get my seasonal improvement in Spring I can do more mentally and physically, but I do not sleep better or longer. My sleep might even be a little worse. so although I am less 'fatigued' in terms of energy limitations I am at least as sleep deprived/jet lag fatigued. What is other peoples experience?

OTH
 

JAH

Senior Member
Messages
497
Location
Northern California
Interesting points from MeSci and others about sleep/sleepiness

I find my sleep issues do not correlate completely with my energy limitations. When I get my seasonal improvement in Spring I can do more mentally and physically, but I do not sleep better or longer. My sleep might even be a little worse. so although I am less 'fatigued' in terms of energy limitations I am at least as sleep deprived/jet lag fatigued. What is other peoples experience?

OTH
I feel the same way. I sleep well, tell someone, who says "that's good" and if I'm up to it I'll say "not really." It's kind of a bad sign, tells me something is up, I tend to sleep more when I'm feeling more "sick", meaning flu-like.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
Interestingly, I am hyperthyroid at the moment, and have been on LDN for about 2 weeks, and have had more juice in the tank for the last couple of days. Yesterday, I pruned in the garden for at least an hour, which I would not normally be able to do. Although I felt shattered last night, this afternoon I was able to put my seed potatoes in my vege patch!

Certainly the last time I was hyperthyroid, I had more energy, and didn't crash the same way. Which is fine until the thyroid levels get too high......

I don't know if this says anything about the mechanism of what is going on...
 

IreneF

Senior Member
Messages
1,552
Location
San Francisco
@Sushi, between carrying the bucket of rocks and opening windows, you need to rest LOL. And re: your first question, I am very blessed that my step-daughter often blow dries my hair for me so I rarely have to do this myself. But when I do, it is extremely difficult.
I dry my hair by bending over at the waist and drying it upside-down. But that happens only about once every five years, because I hardly ever leave the house.
 

Gingergrrl

Senior Member
Messages
16,171
Interestingly, I am hyperthyroid at the moment, and have been on LDN for about 2 weeks, and have had more juice in the tank for the last couple of days. Yesterday, I pruned in the garden for at least an hour, which I would not normally be able to do. Although I felt shattered last night, this afternoon I was able to put my seed potatoes in my vege patch!

Certainly the last time I was hyperthyroid, I had more energy, and didn't crash the same way. Which is fine until the thyroid levels get too high......

I don't know if this says anything about the mechanism of what is going on...

@daisybell LDN actually can make a person hyperthyroid if you were already on the border or well controlled with thyroid meds. When I read about LDN, it said that you need to have your thyroid checked very frequently to avoid this happening and often have the meds lowered. I only tried LDN for one night and it did not agree with me but I had talked to my Endo about it and was prepared to do thyroid labs once a week. Were you hyperthyroid before starting LDN? If so, that is a different scenario.
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
@daisybell LDN actually can make a person hyperthyroid if you were already on the border or well controlled with thyroid meds. When I read about LDN, it said that you need to have your thyroid checked very frequently to avoid this happening and often have the meds lowered. I only tried LDN for one night and it did not agree with me but I had talked to my Endo about it and was prepared to do thyroid labs once a week. Were you hyperthyroid before starting LDN? If so, that is a different scenario.
I started the LDN and discovered I was hyperthyroid at around the same time... It's a relapse of my Graves' disease unfortunately....
 

JAH

Senior Member
Messages
497
Location
Northern California
I think we have a better language for pain than fatigue. Pain is also understood by most to be a disabling symptom, whereas everyone living has been tired, and it hasn't stopped them. So if all it is is fatigue, than it can't be much.

In the past I have described the fatigue -which is my most disabling symptom- as a combination of the fatigue you have when you have the flu, with insomnia. So tired, sick, eyes half lidded and stinging. And at its worse when it leaves you pinned to the bed by thousands of tiny invisible weights. I have thought at these times "better not be a fire, because I would surely burn"

This past year I have suffered with tremendously difficult neurological problems, and has made me rethink the illness. The fatigue now is more painful, it drills in me. It has this numbing quality, and make my brain feel like it's filled with cotton. (Sick 27 years and never had brain fog until about a year ago). Yet these neurologic disorders bring a fatigue that I recognize. I've been feeling it for years, in the severe patches. I think I have had the neurological form all along, though for all these years I strictly thought the fatigue was immune related, because the fatigue really felt to me like the fatigue of mono, of a bad flu.

Sometimes when I just wake up I have a few seconds of consciousness before my body wakes up. That's the time I'm free. Until 2 seconds later, when I start to feel it, the incipient sickness creeps and seeps in, slowly until my body is once again enveloped by it -- a living evolving tortuous sickness, a living part of me that hangs like a mist, but never clears. My mind is free for 2 seconds a day, if I'm lucky, then back to prison.
 
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aimossy

Senior Member
Messages
1,106
For me it would be more waking up like you haven't had any sleep - like more extreme exhaustion/being utterly drained of fuel or something. The first few years my body felt over revved and angry like it was fighting something, my system felt over amped and angry but exhausted. If I don't take pills for sleep there is no sleep and I am worse off for not having the pharmaceutical sleep.Strangely in the very initial stage of the illness I could do nothing but sleep.

After about 3 -4 yrs it started to feel a bit different - like the Harry Potter Dementor's had got me. all the goodness sucked out of the body- but at the same time this is when I started to feel I was able to cope more with it. I felt this was like my body not having the reserves to keep reacting quite so intensely. I started to manage to do a bit more but you do feel liked your muscles are filled with concrete, there was some sort of stability that came with this but the Dementor still has my oomph, my zest, my spark and my reserves. My synapses in my brain feel covered in wall paper glue or lacking in lubrication! The flow through my whole body feels stilted or glugged compared to what normal was.
 
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JAH

Senior Member
Messages
497
Location
Northern California
P.s. We must, Must, MUST change the name. Fatigue cannot be in there. I have no solution really, but please let every CFS agenda, at every advocacy project bring this up.

If you want to feel even worse, read the comments section in the wonderful Washington Post article. It's the name that is giving the idiots the fodder they need to make their ignorant and cruel comments.
 

A.B.

Senior Member
Messages
3,780
I was thinking about the 'low battery' idea, and to me it isn't that the battery is low, but more that it is absolutely tiny. If I am lying in bed doing absolutely nothing all day then I can feel relatively normal, but if I then have to go to an appointment or something it uses everything up. I have no where to store energy. Either that or it simply drains at an astonishing rate.

Perhaps that is a somewhat pernickety distinction but it would more closely echo my experience.

This closely resembles my experience as well.

It's exactly as if there was some problem in producing and storing energy. When I rest, my energy balance is positive and I gradually recover, but much more slowly than healthy people. If I'm well rested, I'm almost fine (or at least I like to think that). Well rested doesn't mean a good night of sleep: it means several days carefully managing energy and paying close attention to my body. During any form of exertion, the energy balance is negative: when the energy reserves drop low enough, I start feeling worse. Low energy reserves seem to impair the body's ability to generate energy: the time to recover is not linear but exponential.

But this is only part of the story. There are also fluctuations in energy levels that have nothing to do with exertion. I can get worse within 30 minutes, for no apparent reason, with the relapse lasting weeks to months. It does seem to happen more frequently shortly after eating a meal though.

I also find it interesting that during such a relapse, the decline in energy levels happens over night. If the day before I suddenly noticed feeling worse, it's not really bad until the next morning. Whatever pathological process is happening seems to impair restoration during sleep.

During these relapses gut issues also become worse, and I get symptoms of endocrine dysfunction.