DanME
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This is a real show? Reality TV got quite extreme the last years.
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Fatigue: late night or early morning type?
- Thread starter Jonathan Edwards
- Start date
This is a real show? Reality TV got quite extreme the last years.
Soundthealarm21
Senior Member
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- Dallas, TX
It's actually a really cool show. I watch it and cringe when I try to imagine myself in their position!
SDSue
Southeast
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It is a real show. I used to love camping, hiking, etc and had a big desire to do an extreme type experience - but not without clothing or a tent! Shows like this allow me to live vicariously.
OverTheHills
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Like a lot of other people here I don't feel 'fatigue' is a very useful description. Breaking it down (sorry about the novel here):
I usually have a unrefreshing sleep/got up at 3 am feeling, although sometimes that wears off during the day. Interestingly I am usually awake for about 2 hours at 3 am and do not have that feeling then. In fact thats probably the time I feel least 'jet lagged'.
I used to get the 'gravity turned up' feeling of weakness a lot but I don't really since my POTS is treated.
Even with POTS under control I still get the quick physical fatigability thing - particularly from repetitive arm movements. So I can just about clean a mirror in a day: it would take me a week to clean a shower cubicle in daily patches. Towards the end of the mirror cleaning I get an exagerrated lactic acid burn/muscle tremor like I would have from extreme exertion when I was well. Trying to exceed this is a quick route to PEM. And yet I can do 5 hours office work and a commute on top providing I take it relatively easy during the day and rest up a bit the following day.
The need to withdraw and shivery flu type feeling for me are associated with approaching/exceeding my energy limits and are a warning or the start of PEM. Excessive sleepiness is a PEM thing for me (had lots of this around onset). @Persimmon thanks for reminding me about that one.
Like most here I never get the healthy, happy after the hike/workout feeling. (nostalgic smiley)
So just like eskimos have a lot of words for snow(apocryphal?), people with ME don't find fatigue a very specific term.
OTH
I usually have a unrefreshing sleep/got up at 3 am feeling, although sometimes that wears off during the day. Interestingly I am usually awake for about 2 hours at 3 am and do not have that feeling then. In fact thats probably the time I feel least 'jet lagged'.
I used to get the 'gravity turned up' feeling of weakness a lot but I don't really since my POTS is treated.
Even with POTS under control I still get the quick physical fatigability thing - particularly from repetitive arm movements. So I can just about clean a mirror in a day: it would take me a week to clean a shower cubicle in daily patches. Towards the end of the mirror cleaning I get an exagerrated lactic acid burn/muscle tremor like I would have from extreme exertion when I was well. Trying to exceed this is a quick route to PEM. And yet I can do 5 hours office work and a commute on top providing I take it relatively easy during the day and rest up a bit the following day.
The need to withdraw and shivery flu type feeling for me are associated with approaching/exceeding my energy limits and are a warning or the start of PEM. Excessive sleepiness is a PEM thing for me (had lots of this around onset). @Persimmon thanks for reminding me about that one.
Like most here I never get the healthy, happy after the hike/workout feeling. (nostalgic smiley)
So just like eskimos have a lot of words for snow(apocryphal?), people with ME don't find fatigue a very specific term.
OTH
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Are you sure you're sure? All of a sudden, the hunger games don't seem so far off.
Persimmon
Senior Member
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During the initial phase of my ME (sudden onset) I slept many hours per day and felt sleepy-tired - as one does with a cold / flu / mono. After that early period, my "fatigue" transformed in nature.
This change was part of a broader symptomatic metamorphosis I gradually underwent - an experience that ties in with the hypotheses of Lipkin & of Cheney that there are different chronological stages of ME. (Maybe only some ME's involve stages?)
Subsequent to that early stage, my illness-related "fatigue" has been somewhat like waking too early in the morning; it is nothing like healthy late-night tiredness.
Maybe a better analogy would be waking too early after a massive day of physical exhertion and a night of drunkenness.
My current "fatigue" changes during the day. I feel terrible upon waking in the morning. I get into strife if I try to get up and do things in the first couple of hours after awakening. I don't get sleepy in the evenings - this is when I feel least "fatigued". And if I do a lot during the day, I'm likely to be wired-but-tired in the evening, which makes it extremely difficult to get to sleep.
Echoing the comments of others, my "fatigue" is quite different to anything experienced pre-ME.
This change was part of a broader symptomatic metamorphosis I gradually underwent - an experience that ties in with the hypotheses of Lipkin & of Cheney that there are different chronological stages of ME. (Maybe only some ME's involve stages?)
Subsequent to that early stage, my illness-related "fatigue" has been somewhat like waking too early in the morning; it is nothing like healthy late-night tiredness.
Maybe a better analogy would be waking too early after a massive day of physical exhertion and a night of drunkenness.
My current "fatigue" changes during the day. I feel terrible upon waking in the morning. I get into strife if I try to get up and do things in the first couple of hours after awakening. I don't get sleepy in the evenings - this is when I feel least "fatigued". And if I do a lot during the day, I'm likely to be wired-but-tired in the evening, which makes it extremely difficult to get to sleep.
Echoing the comments of others, my "fatigue" is quite different to anything experienced pre-ME.
Strawberry
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I agree with those that call it a flu fatigue. I wake up feeling sick, and go to bed feeling even worse. Oh, and I also somehow managed to run a marathon while having the flu. So now I can barely lift my feet to walk.
"Sick Fatigue"
"Sick Fatigue"
ahimsa
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I have not read all the replies yet but, like @Sushi and @Gingergrrl (and others), the feelings I get are nothing like the fatigue that I got before I got sick.
For example, I climbed to the summit of Mt. Hood back when I was healthy. As you might expect from an activity that lasts 8-10 hours (5-7 hours climbing up, 3-4 hours going down) it was quite tiring.
On the way down I was definitely tired from lack of sleep (we started at 3 or 4 AM), and the exertion (the climb starts at 6,000 ft and goes up to about 11,245 ft), and the altitude. But I did not feel nausea, dizziness, or out of breath. I never got a sudden feeling of, "I gotta sit down right now." (these symptoms seem to be from NMH, drops in blood pressure, pre-syncope feelings -- I don't faint "in real life" but did faint on the tilt table test)
Also, I had some muscle soreness which is normal. But unlike now I had no fasciculations (muscle twitching). Now I get these at random all over my body, sometimes in places I never even thought about having muscles (e.g., the sole of my foot).
Most of my current symptoms do not match up with any type of fatigue -- whether it was from getting up early, staying up late, running a 10K, lifting weights, or working too many hours -- that I felt before I got sick. No yawning or feeling drowsy, for example. That's what I call "good" tired.
I may get this kind of "good" tired feeling now and then but that type of fatigue is not disabling.
For example, I climbed to the summit of Mt. Hood back when I was healthy. As you might expect from an activity that lasts 8-10 hours (5-7 hours climbing up, 3-4 hours going down) it was quite tiring.
On the way down I was definitely tired from lack of sleep (we started at 3 or 4 AM), and the exertion (the climb starts at 6,000 ft and goes up to about 11,245 ft), and the altitude. But I did not feel nausea, dizziness, or out of breath. I never got a sudden feeling of, "I gotta sit down right now." (these symptoms seem to be from NMH, drops in blood pressure, pre-syncope feelings -- I don't faint "in real life" but did faint on the tilt table test)
Also, I had some muscle soreness which is normal. But unlike now I had no fasciculations (muscle twitching). Now I get these at random all over my body, sometimes in places I never even thought about having muscles (e.g., the sole of my foot).
Most of my current symptoms do not match up with any type of fatigue -- whether it was from getting up early, staying up late, running a 10K, lifting weights, or working too many hours -- that I felt before I got sick. No yawning or feeling drowsy, for example. That's what I call "good" tired.
I may get this kind of "good" tired feeling now and then but that type of fatigue is not disabling.
Kati
Patient in training
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- 5,497
I wish we veered away from 'fatigue'. Everyone experience fatigue.
I feel sick. In the morning I usually feel retched. That's why I stay in bed and usually end up sleeping in.
During the day, here are the activities that will make me sicker: Talking, doing computer work or any cognitive work upright. Less so reclining but I have to watch my activities even reclining. Standing. Walking. Being exposed to too much movement, too much noise, too many stimulations around me.
The evening I usually have a bit more energy into me, but still I need to pace and rest every 15 minutes.
Once more this is not about fatigue. It's about feeling sick.
I feel sick. In the morning I usually feel retched. That's why I stay in bed and usually end up sleeping in.
During the day, here are the activities that will make me sicker: Talking, doing computer work or any cognitive work upright. Less so reclining but I have to watch my activities even reclining. Standing. Walking. Being exposed to too much movement, too much noise, too many stimulations around me.
The evening I usually have a bit more energy into me, but still I need to pace and rest every 15 minutes.
Once more this is not about fatigue. It's about feeling sick.
I get different types of physical fatigue which can come and go and fluctuate in intensity. However it is the mental/cognitive fatigue if you can call it that, which is most prominent for me.
The mental/cognitive "fatigue" has been with me for 5 years and has been relentless in that it has never completely lifted. Also there are many different aspects to the cognitive fatigue some of which I had never previously experienced.
The first being an inability to bring thoughts together or losing context. So if I read about "A" and then read "B" which requires I have read "A", I wouldn't be able to bring in "A" and so would have lost "context. (sorry I couldn't think of a better example.
The second is a lack of vividness to my own thoughts or feelings (dysthymia, depersonalisation?)
Third, wired but tired, this often more noticeable when my head is feeling inflamed or when I have exerted my self physically. It is like my brain is very awake but I cannot give it "direction" and cannot focus.
Fourth cognitive actions feel extra heavy or leaden. This to me seems like the brain is inefficient and so something like reading a book or talking to someone feels more laborious than it should. This is one of the symptoms that has never lifted since 5 years ago.
There are more cognitive symptoms such as reduction in spiritual sense (see Hip's thread) as well as lack of mental stamina, confusion, mental PEM, brain over activity and other strange sensations, which I cannot explain at the moment.
The physical aspect feels like having run a marathon the previous day and/or had a crazy party. Then feeling heavy and leaden. Luckily I'm not too bad physically.
I don't think I can get this kind of fatigue anymore, because either I get more adrenaline (wired but tired) or get other cognitive symptoms, which alters my perception/awareness. I would normally associate this as kind of a good fatigue because it would sometimes help me fall asleep easily.
The mental/cognitive "fatigue" has been with me for 5 years and has been relentless in that it has never completely lifted. Also there are many different aspects to the cognitive fatigue some of which I had never previously experienced.
The first being an inability to bring thoughts together or losing context. So if I read about "A" and then read "B" which requires I have read "A", I wouldn't be able to bring in "A" and so would have lost "context. (sorry I couldn't think of a better example.
The second is a lack of vividness to my own thoughts or feelings (dysthymia, depersonalisation?)
Third, wired but tired, this often more noticeable when my head is feeling inflamed or when I have exerted my self physically. It is like my brain is very awake but I cannot give it "direction" and cannot focus.
Fourth cognitive actions feel extra heavy or leaden. This to me seems like the brain is inefficient and so something like reading a book or talking to someone feels more laborious than it should. This is one of the symptoms that has never lifted since 5 years ago.
There are more cognitive symptoms such as reduction in spiritual sense (see Hip's thread) as well as lack of mental stamina, confusion, mental PEM, brain over activity and other strange sensations, which I cannot explain at the moment.
The physical aspect feels like having run a marathon the previous day and/or had a crazy party. Then feeling heavy and leaden. Luckily I'm not too bad physically.
I don't think I can get this kind of fatigue anymore, because either I get more adrenaline (wired but tired) or get other cognitive symptoms, which alters my perception/awareness. I would normally associate this as kind of a good fatigue because it would sometimes help me fall asleep easily.
snowathlete
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Good question.
Well, it's midnight and I usually go to bed in an hour or two...my brain functions better in the evening. I've noticed lots of people with ME end up with skewed sleep periods like me. Probably something in that.
But the fatigue isnt really like either of those two examples you mentioned. When I was well I did stuff like that, and yes felt fatigued, but its just a completely different level when you have ME. It's one reason why patients dislike the fatigue label because healthy people apply their own understnading of fatigue based on their own experience and don't then appreciate the severity.
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. I had surgery on my leg several years before I got ill, a decompression of a sheath and for an hour or two it felt pretty similar to my ME.
Is it as bad as that, all the time? Probably not, but it is frequently that bad, and it's closer to this than the end of hard day or a very early start.
Hope that helps
Well, it's midnight and I usually go to bed in an hour or two...my brain functions better in the evening. I've noticed lots of people with ME end up with skewed sleep periods like me. Probably something in that.
But the fatigue isnt really like either of those two examples you mentioned. When I was well I did stuff like that, and yes felt fatigued, but its just a completely different level when you have ME. It's one reason why patients dislike the fatigue label because healthy people apply their own understnading of fatigue based on their own experience and don't then appreciate the severity.
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. I had surgery on my leg several years before I got ill, a decompression of a sheath and for an hour or two it felt pretty similar to my ME.
Is it as bad as that, all the time? Probably not, but it is frequently that bad, and it's closer to this than the end of hard day or a very early start.
Hope that helps
lansbergen
Senior Member
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And cramp in small muscles like fingertips?
ahimsa
ahimsa_pdx on twitter
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I don't get muscle cramps. I do get weird pains -- very brief, sharp pains, just bad enough to make me say "Ow!" They may repeat in the same place a couple times but then they go away quickly.
I have no idea whether these pains are in the muscles, joints (my guess), nerves, or what. In fact, I don't even mention them to my doctor any more. They are so weird and just annoying, not disabling.
I have a lot of symptoms that are like that. They're bad enough to be annoying (muscle twitches, sudden sharp pains, chest pain) but they are so far down the list from my primary, disabling symptoms that I don't even mention them to my doctors any more. I just focus on the top symptoms. I know that sounds pretty jaded but I've been sick since 1990.
PS. Sorry if this is veering off topic!
daisybell
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More like the getting up at 4 am kind of fatigue, but yet not...
I totally agree with others here that it bears no relation to 'normal' fatigue, either physical or mental.
It's exhaustion, running on empty, with unwell overtones. No reserves, and not much useful in terms of strategies...
I'm rarely sleepy, so in my mind I'm not really tired. I just can't generate any energy.
It's like a car battery at the end of its life. If you start the car on a warm day, without the lights on or the air con, it might cough into life. Drive it nicely, and it might start again the next day. Do anything careless, and you're stuck. The battery won't jump start though because it's too far gone!
I totally agree with others here that it bears no relation to 'normal' fatigue, either physical or mental.
It's exhaustion, running on empty, with unwell overtones. No reserves, and not much useful in terms of strategies...
I'm rarely sleepy, so in my mind I'm not really tired. I just can't generate any energy.
It's like a car battery at the end of its life. If you start the car on a warm day, without the lights on or the air con, it might cough into life. Drive it nicely, and it might start again the next day. Do anything careless, and you're stuck. The battery won't jump start though because it's too far gone!
Revel
Senior Member
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I dislike the term "fatigue" about as much as the use of "malaise" in PEM.
On a good day, I would go along with the analogy "nothing left in the tank". My body feels starved of the fuel needed to be active.
On an average day, my muscles will start to ache about 10 seconds into an activity, such as cleaning my teeth. If I continue on, the muscles weaken and fail.
On a bad day, even lying motionless I am wracked with pain all over, I barely have enough energy to breathe, am nauseous, "fluey", light and sound sensitive. When this state drags on for weeks at a time, unremitting, I become scared that this is my new "normal" and I literally want to die.
Of the two choices given, I would say that disoriented state of getting up too early was closest, but only because of the fuzzy-headed, slightly nauseous feeling that can occur when woken up from a deep sleep. It does not encompass the " running on empty" aspect as the body works normally once it's up and out of bed, the head just needs a little extra time to "catch up" with the sudden and unexpected activity (hope that last line makes sense).
On a good day, I would go along with the analogy "nothing left in the tank". My body feels starved of the fuel needed to be active.
On an average day, my muscles will start to ache about 10 seconds into an activity, such as cleaning my teeth. If I continue on, the muscles weaken and fail.
On a bad day, even lying motionless I am wracked with pain all over, I barely have enough energy to breathe, am nauseous, "fluey", light and sound sensitive. When this state drags on for weeks at a time, unremitting, I become scared that this is my new "normal" and I literally want to die.
Of the two choices given, I would say that disoriented state of getting up too early was closest, but only because of the fuzzy-headed, slightly nauseous feeling that can occur when woken up from a deep sleep. It does not encompass the " running on empty" aspect as the body works normally once it's up and out of bed, the head just needs a little extra time to "catch up" with the sudden and unexpected activity (hope that last line makes sense).
@Jonathan Edwards "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?"
I would say the "fatigue" is more like a car with broken parts and little gas. I can get out of the driveway but I won't make it too far up the street. The energy production is just not there. In the evening I have more fuel. But whether I feel good or tired on a particular day, the "gas" will run out soon despite how I'm feeling and I have to lie down until it replenishes.
I would say the "fatigue" is more like a car with broken parts and little gas. I can get out of the driveway but I won't make it too far up the street. The energy production is just not there. In the evening I have more fuel. But whether I feel good or tired on a particular day, the "gas" will run out soon despite how I'm feeling and I have to lie down until it replenishes.
Gingergrrl
Senior Member
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@Revel Agree 100% and I wish we could abolish those two terms in favor of something that expresses the body's inability to create energy on demand (like a mitochondrial toxicity.) I like the newer term PENE (post exertional neuro exhaustion) much better.
alex3619
Senior Member
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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.
On other occasions, pushing myself during moving house, I would work in short bursts, taking it easy the whole time, but wind up moving super slow and losing track of what I was doing as my brain slowed.
ME is having capacity stripped away from us, mental or physical. Fatigue is close to irrelevant. This is highlighted by the cases of disabled and partially disabled ME patients who have no chronic fatigue, or have lost their chronic fatigue. Chronic fatigue is not really a mandatory symptom. To be scientific about it,
, its about having no oomph and losing the oomph we have left very fast. (Half joke) We call that PEM or similar, though that's not accurate either and involves symptom exacerbation. Its more like metabolic exhaustion than fatigue.
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.
On other occasions, pushing myself during moving house, I would work in short bursts, taking it easy the whole time, but wind up moving super slow and losing track of what I was doing as my brain slowed.
ME is having capacity stripped away from us, mental or physical. Fatigue is close to irrelevant. This is highlighted by the cases of disabled and partially disabled ME patients who have no chronic fatigue, or have lost their chronic fatigue. Chronic fatigue is not really a mandatory symptom. To be scientific about it,
, its about having no oomph and losing the oomph we have left very fast. (Half joke) We call that PEM or similar, though that's not accurate either and involves symptom exacerbation. Its more like metabolic exhaustion than fatigue.
For me, there are different kinds of fatigue/exhaustion ( I don't like the word fatigue either).
1. Every cell in the body feels exhausted. (really bad in the severe years).
2. Heavy exhaustion which feels deeply immune - like what I would imagine interferon may feel like.
3. Weak, frail, no desire to eat - even though tummy is rumbling, retching with exhaustion - ( I think this is the TNF one, but I am guessing).
4. POTS crashing - a desperate need to lie down.
I experience these at moderate level ME now, but they are still agonizingly debilitating and deeply concerning. Especially the effect on my heart and my nervous system, which seems to be getting worse the last 2 years.
These 1,2 and 3 are always changing. The POTS one is always a problem. It gives me no choice but to lie down all the time. 1,2,3 come and go. It's a rollercoaster of up/down, always changing. And you don't know where it is taking you next or for how long or how bad it will get. I have to rest extremely to manage my symptoms.
1. Every cell in the body feels exhausted. (really bad in the severe years).
2. Heavy exhaustion which feels deeply immune - like what I would imagine interferon may feel like.
3. Weak, frail, no desire to eat - even though tummy is rumbling, retching with exhaustion - ( I think this is the TNF one, but I am guessing).
4. POTS crashing - a desperate need to lie down.
I experience these at moderate level ME now, but they are still agonizingly debilitating and deeply concerning. Especially the effect on my heart and my nervous system, which seems to be getting worse the last 2 years.
These 1,2 and 3 are always changing. The POTS one is always a problem. It gives me no choice but to lie down all the time. 1,2,3 come and go. It's a rollercoaster of up/down, always changing. And you don't know where it is taking you next or for how long or how bad it will get. I have to rest extremely to manage my symptoms.
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I struggle the most in the morning and state that my mornings feel like I only got two hours of sleep the night before - like my body is screaming - wait? what? NO IT CAN'T BE TIME TO GET UP!!!!
And then as the day wears on - it shifts into whole body ache, bone-deep tiredness... and I equate that to having run a marathon without any training. My body just wants to stop ... to lay... to not hold my arms up... to not hold my head up any longer... every muscle screams - no more... let us just rest.
None of that is a 'good tired' after a long, busy day. I remember that feeling well and miss it desperately as that is the muscles being tired but healthy and filled with 'happy' endorphins that reward you for the busy, active day. I've always wondered if part of the problem is that process and 'reward' physiology being broken. Even when I walk for ten minutes (or longer during periods of mild symptoms), yoga, pilates - all used to trigger endorphins - but nothing now.
And then as the day wears on - it shifts into whole body ache, bone-deep tiredness... and I equate that to having run a marathon without any training. My body just wants to stop ... to lay... to not hold my arms up... to not hold my head up any longer... every muscle screams - no more... let us just rest.
None of that is a 'good tired' after a long, busy day. I remember that feeling well and miss it desperately as that is the muscles being tired but healthy and filled with 'happy' endorphins that reward you for the busy, active day. I've always wondered if part of the problem is that process and 'reward' physiology being broken. Even when I walk for ten minutes (or longer during periods of mild symptoms), yoga, pilates - all used to trigger endorphins - but nothing now.