Fatigue: late night or early morning type?

[antares4141]

I'd have to say neither cause there are so many symptoms associated with the fatigue.
Lack of coordination, problem solving difficulty especially when there is stress involved. Some people call it brain fog, I like to call it brain burn cause I can feel it in my forehead (burn) .
Before I quit gluten stomach bloat and an extreme unpleasantness that is difficult to describe. Maybe like I've been poisoned. (I still think this condition was caused from actual poisoning) Still get most of these symptoms way less profound. The fatigue could probably be best described as flue like symptoms and another reason why I don't think it's fair to say just tired. If you have the flue and can hardly get up to use the bathroom that's more like the fatigue I have experienced in the past. And still experience to a much lesser degree since I got out of a moldy house and quit gluten.
Before my recent 20 day course of abx I finished a month ago I had pretty severe post exertional malaise. Once when my dad visited me I really pushed myself and the next day I couldn't get out of bed. When I tried I was extremely dizzy and extremely week and had to lay back down. For an entire day. Slept most of it. Than another couple of days to shake off the grunge. The dizziness is always there to some degree or another along with the coordination problems I just can aggravate it by pushing myself. And why most of us don't try to do much more than the most necessary household chores. And use a computer in bed cause of all the difficulties sitting at a desk.

Repetitive stress from using Mice, my ass hurts from sitting on it but that might be more from an old hip injury. My upper spine feels inflamed from putting pillows behind my back so I can use a laptop in bed. My scalp even hurts some from laying my head on a pillow. These symptoms have abated drastically since the abx also I must admit. Most of us have sleep disorders. Wake up in early morning hours and can't get back to sleep for 2 1/2 hours. Which causes you to want to nap during the day than not able to go to bed that night.

I've found by not eating anything or having any carbs 6 to 7 hours before bedtime keeps me from waking up at night. I get a virtually unbroken 8 hours of sleep. It's uncanny. When I try to cheat I almost always end up in bed awake from 4:30am to 7:am.

I've read others say they have pins and needles sensations in their face or cerebral palsy like symptoms. I can relate to that but not since the mold exposures. Mine was a lot like sciatica pain but only in the head. It would move around from my ears to my throat, to my eyes and checks, temples, scalp. And finally go away.

There are other symptoms also but the above are the hallmark ones that separate plain old fatigue from a cursed life with cfs.

I can remember a year and a half ago I made the mistake of visiting somebody out of state and spent a substantial amount of time in their home. When I finally got home I ended up bed ridden for three days. A lot of it with those cerebral palsy like symptoms. I suspect there home had a mold issue. I felt literally like I had been poisoned.

 

[taniaaust1]

A simple question from an ignorant doctor. I got up at 4.00 to drive someone to the airport. That set me wondering. Is the fatigue of ME like the end of a long hard day or more like the beginning of a day that should never have started yet? For me the second type is more unpleasant.

Or is it like neither of these?

Oh no.. this so far misses the mark, it isnt comparable at all. Its nothing like that. My level of "fatigue" (its more like complete exhaustion) it makes it quite dangerous for me to even try driving. Im so fatigued I drive throu red lights etc so cant drive.

To come close to how my fatigue feels (on a good day!!! mind you, I cant move on a very bad day, even moving a finger then becomes extreme effort or having to hold my head up). I suggest if you truely want to kind of know what its like for my good ME days(this is no exaggeration), I suggest to try going without sleep for 4-5 days.

No sleep till you get to the point where your brain cant function well at all and its an extreme struggle to think clear or straight, no sleep till you are in a bit of confused state and have your brain keep driftting on.. focusing is hard.. It also becomes harder to stay in a good mood at this point as you'll be sooo very tired (you'll be having to work on not letting anything bother you emotionally as you are too tired to deal with anything. You may want to cry at this point as you sooo need to sleep!).

Once you've reached this mental exhaustion to that point (a normal ME brain exhaustion state), then go running till you are physically exhausted too (maybe a 10km run) .. run till you are about to drop and having to use a crazy amount of will power just to be able to stand up and walk (it is actually taking an effort to take each step, and stairs my legs are so fatigued that I have to crawl up those, just a few steps I have to crawl up them or use a rail to help myself up.

Put some weights on top of your shoes till your legs arent strong enough to get up stairs.. then walk around like that.. that is the effort involved to move the ME legs.. imagine legs being like this most of time or only being okay for a very very short time before becoming like this)...

If you can get yourself to the state I just described above in those ways, only then will you be able to start to understand the fatigue many of us deal with constantly (its why most of us hate the word fatigue, it doesnt describe what most think fatigue is.. exhaustion is more correct)... and only then will you be at the level of "fatigue" I feel every single day, every single moment unless its even worst.

Then of cause on top of that, we have all the other disturbing symptoms on top eg dizziness, pain and so many others.

.............

If I was honest with how I feel right at this very moment fatigue wise. I'd tell you that right now thou its middle of the day ..4pm here, I'd love so much to be curled up in bed asleep as Im that tired but Im so used to being this tired that I dont even think about it (Ive learnt how to put up a mental block around this tuning it out), its my normal ME state (but from this level it dont take much till Im on the floor too fatigued to get up). *Even if I did go to bed right now, I wouldnt be able to sleep evne tou Im so tired.

Im mentally fatigued right now which is a constant thing for me, to the point Ive had to correct this post probably 8 times due to full word errors eg I just wrote "eggs" instead of the word errors, wrote "big" instead of the word "bit" ..or I keep leaving words out of sentences etc etc. My brain is fatigued. If you check my posts out 90% would have to have been edited over and over.

Thing is if I allowed myself to just go to bed that when I felt this level of fatigue (my normal ME fatigue level), I'd never be out of bed and Im determined to live some kind of life with this illness and that involves not sleeping all the time so here I am making this post. (I can do this without maing myself worst as Im on the look out for worst tiredness or other symptoms eg sore throat, head pain etc to tell me to immedately head for bed due to impending crash if I dont).

I often got no choice at all thou and NEED to be in bed or my whole condition flares up even worst and its the other symptoms other then this fatigue which become truely shocking eg I hate pain, I dont like it when I become too weak to move and cant get myself to the toilet, I go into severe neuro symptoms, spasms and jerking etc and my hands start going into spasticity postures (reminds me of a spider sprayed with flyspray) etc etc etc.

ps I forgot to add, While I was in the middle of doing this post, I took a short brain break and went to get something to sweet to eat, decided I'd make a choc moouse. Dazed out thou due to fatigue while melting the chocolate which ended up melting a microwave safe container (I guess due to the fat content in chocolate).. so now I have melted chocolate and melted plastic over the bottom of my microwave. sighs.. so Im now going without a treat, Im too fatigued to try again. ***sitting here now only dreaming about the treat I was going to have***

My exhaustion causes me almost constant issues.

 

[taniaaust1]

or more like the beginning of a day that should never have started yet?

I dont get up in the mornings till my body is ready to do so otherwise I have a disasterous day and usually end up injuring myself due to walking into the wall in a doorway, dropping something (often on my toes) or falling into something due to being too tired. A few days back I tried getting up slightly before my body/brain was ready to do so and then shut my finger in a drawer. Its looking better today, it was all bruised and swelled up. Im dangerous and not much functional if I get up before my body/brain is ready to do so.

 

[taniaaust1]

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..

Im amazed someone remembered that. That was me who did that when I was staying at my sisters. We ended up having to very carefully unfold all the reminder notes and important phone numbers in my handbag without ripping them and try to dry everything out (all the ink thou ran).

A great example of how badly our brains are "fatigued" to the point we are often struggling to think well. (Fatigue thou is a very bad word to describe our state.. more like a dementia state at times as we are so exhausted).

If Jonathan Edwards wants to really know what the "fatigue" feels like.. he needs to have that ME exhausted ,causing confusion, brain state there with it too as it isnt just physical fatigue but one heck of a combo.

 

[taniaaust1]

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,

I thought your post was very interesting as that is how my ME used to be, if I was up al night without no sleep at all, I'd start to feel more alive around 9-10am then if I'd slept.

Mine is no longer ike that thou. Im sure something must be going on with our brain wave states which is affecting us in the morning after waking or if we wake up before we are ready to do so. (I was like you described back when I was getting the abnormal EEGs .. as far as I know my EEGs are now normal, well at least my last one was).

 

[taniaaust1]

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 think many of us get that sleepy exhaustion more so early ME years, it seems mostly gone in the long termers. I still do get the sleepy fatigue at times but not to the same level as early years where I'd often be constantly yawning and certainly was very sleepy. Now its mostly "exhaustion" fatigue instead of exhaustion AND sleepy (cant stay awake) fatigue..

 

[taniaaust1]

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

I personally certainly dont agree with all Julia Newtons ideas on this as dont fit. I dont she understands it as much as she thinks she does.

 

[taniaaust1]

The only researcher I am aware of who is currently doing brainstem research is Wyller.

Dr Richard Kwiatek, the Adelaide (Australia) ME/CFS researcher, I think he's also looking at brainstem in his study he's currently head of (thou I think he has most of his interest in the mid brain but I think he's also looking whole brain), I hope we will see published in the near future. Its a follow up confirmation study (actually I think he may have two studies going on) to his past one showing our mid brains are declining more then they should and that one can tell how long one has had ME for by looking at the midbrain and the amount of shrinkage.

His follow up study is looking at more then his first study in this area did (I had backs of my eyes looked at with advanced equipment and a quite intensive neuropsych investigation done with it which I think showed some interesting results if the others showed the same issues. My neuropsych testing shocked me, it was so bad).

 

[Starfive]

Another vote for 'fatigue' being a nonsense word when it comes to describing what most of us feel. It has a connotation and perception of being tired when tired is so lightweight a term.

I don't experience tired. It is closer to a systemic failure of function. I tell my body to wake up and it doesn't. I tell my mind to respond to an email and it feels like it can't. To spell, nope. To run, no way, to talk, not for long, To think, only so much. On and on. Perhaps some messaging errors are a part of the problem. My body now for over five years has been too weak to respond to normal messages. A viral takeover? Of the brainstem?

What I do is sleep, sleep and sleep. I used to wake up around 2:30 in the afternoon, now I can easily sleep til five or six. I go to bed around 1am. (Was always a night person)

I dont think that is 'fatigue' . When my neurologist gave me some Nuvigil to try it was like waking up, really waking up as in I could function. Was great. I save the medication for special days when I need to be awake because of the PENe,PEM. So then I could have my brain back for a short time if I felt I could pay the price.

The most awful symptom for me however is not the sleep issues or cognitive issues but the unbearable pain. From top to bottom, all cells burning up. Intense burning that I could not live with except for pain meds which of course include side effects. The leg pain is the worst of the burning.

This thread is interesting though I feel such sadness for everyone who endures this torture. Luckily I do not suffer nausea like many of you. My closest friend who shares most of my symptoms ie brain fog weakness etc. but not the leg pain also has so much nausea she can hardly eat anything and is now below 100lbs. Her doctors have no clue after a gazillion tests.

So I am wondering if one subset includes prominent pain and another includes the constant nausea and vomiting?? (Sorry for going off topic... sort of slid there.)

 

[Tammy]

So hard to really get it across what we feel like...................I further the comments about not liking the word fatigue.............for me the word fatigue would be replaced by feeling of heaviness...........like I am being pulled/ sucked down into the ground.............feel very weak and depleted....like my body is trying to run without a battery. I also............as some others have mentioned feel a little better at night............body feels lighter.....my muscles feel a little stronger and I don't feel as depleted. (generally speaking). Very hard to answer your question because there is nothing to compare with when I was healthy. In my healthy years... staying up too late.....burning the midnight oil........or having to get up at 4:00 in the a.m..........neither of these scenarios comes even close to describing the feeling.

 

[Izola]

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."

This is a response to Purple and Snowathlete regarding ME "fatigue." Yes yes Snow Athlete, mine is the feeling you get after surgery with a dab of malpractice thrown in.

I was in labor for 3 days--not so bad if that was all. But then I began crying out for help. Something was horribly wrong. No response from doctors or the nurses. Close to 24 hours later the doctor came about on rounds and found me lying in a lake of blood, that which I earlier attempted to show to the nurses. Baby and I both survived, barely.

I lost, I was told, over half my blood. That produced a weakness than I can only describe as similar to one end of my ME weakness spectrum of my ME "fatigue" which is certainly not fatigue in any of its iterations.

My "crushed" baby, now long grown, lives in a happy state of hyperactivity, inventing and creating.
iz

 

[AaroninOregon]

My daily fatigue typically feels like I stayed up late drinking heavily, and then had to get up early the next morning and go to work.

 

[MeSci]

My daily fatigue typically feels like I stayed up late drinking heavily, and then had to get up early the next morning and go to work.

I used to do that when I was young, and felt OK. Sometimes I didn't even get home in-between!

 

[AaroninOregon]

I used to do that when I was young, and felt OK. Sometimes I didn't even get home in-between!

Oh definitely...late teens to around 28ish one can definitely pull it off.

I can't even imagine drinking like that now.

 

[Izola]

I used to do that when I was young, and felt OK. Sometimes I didn't even get home in-between!

MeSCi: That sounds a bit familiar. But it took me years to get there.

But, as prelude. I was in high school and worked in a lake side theatre which was associated w/ a ministerial and fine arts college. My friend and I were about 16. We tried to look and act worldly but we both looked 12 and rode bikes in cut offs and T's to the lake.

At an after party at a lake saloon, the adults turned their eye when we tried beer and sophistication. Somehow, we got a ride home w/ a graduating "rev." Turned out Ma didn't notice when Kay slipped in late at her house and I didn't go into mine across the street.

I stayed up all night w/ my new friend. And laughed most all night. Revs are pretty safe for teenage girls.

When we realized it was daylight rev realized he had to preach. We raced away to the next town over, egads, to the very liberal church I grew up in. Rev pulled up, over loud engine roar, and flew the three flights of sidewalk stairs trying to straighten his hair and demeanor as I trailed behind.

I snorked instead of singing, lake sand slowly dropping from my hair, whispering its own beat on my hymnal. Iz

 

[redaxe]

@Jonathan Edwards

I'm interested to hear if you have any thoughts about Orexin being a part of why the fatigue for many seems to be worse in the morning? If the brain is unable to signal that it's time to "wake-up" could that contribute to low energy and constant tiredness?

The thing I most strongly remember when my health started going downhill after what seemed like a bad cold was waking up unrefreshed and feeling like crap and needing to go back to bed. By nightime though I couldn't get to sleep easily without sleep-aids.
Sleeping in to very late would seem to make me feel better - I've found from experience my body wants to sleep from 2am-12pm. Getting up early i.e. at 6-7am seems to feel very unnatural now no matter how much I've tried to force myself to get up early.

Is it possible that we can share some similarities to narcolepsy in damage or loss of Orexin producing neurons?

 

[lansbergen]

2am-12pm. Getting up early i.e. at 6-7am seems to feel very unnatural now no matter how much I've tried to force myself to get up early.

And in my case now I have improved a lot it has gone back to what was normal for me. I never was an early bird, I always was a nightowl but what happened with my sleeppattern was rediculous.

 

[Jonathan Edwards]

@Jonathan Edwards

I'm interested to hear if you have any thoughts about Orexin being a part of why the fatigue for many seems to be worse in the morning? If the brain is unable to signal that it's time to "wake-up" could that contribute to low energy and constant tiredness?

The thing I most strongly remember when my health started going downhill after what seemed like a bad cold was waking up unrefreshed and feeling like crap and needing to go back to bed. By nightime though I couldn't get to sleep easily without sleep-aids.
Sleeping in to very late would seem to make me feel better - I've found from experience my body wants to sleep from 2am-12pm. Getting up early i.e. at 6-7am seems to feel very unnatural now no matter how much I've tried to force myself to get up early.

Is it possible that we can share some similarities to narcolepsy in damage or loss of Orexin producing neurons?

I am not sure I can give a very sensible answer. What I do know is that when cognition goes wrong sleep often goes haywire. And when sleep goes haywire for whatever reason cognition copes badly. But we all knew that. SOrry not to be more intelligent.

 

[lemonworld]

I think many of us get that sleepy exhaustion more so early ME years, it seems mostly gone in the long termers. I still do get the sleepy fatigue at times but not to the same level as early years where I'd often be constantly yawning and certainly was very sleepy. Now its mostly "exhaustion" fatigue instead of exhaustion AND sleepy (cant stay awake) fatigue..

this is so on point! I wonder why the illness changes like this, and if this is the norm? The early years of the illness I fell asleep on the floor or at the breakfast table, and could sleep for 24 no problem. Now it's a struggle to get enough sleep and I never feel sleepy. never. exhausted and so desperatly in need of sleep, yes, but never that lovely sleepy feeling. I really miss feeling sleepy like a normal person. When i was healthy i never thought about feeling sleepy as a blessing, but now i see it as one of the most cozy and wonderful experiences...

 

[MeSci]

this is so on point! I wonder why the illness changes like this, and if this is the norm? The early years of the illness I fell asleep on the floor or at the breakfast table, and could sleep for 24 no problem. Now it's a struggle to get enough sleep and I never feel sleepy. never. exhausted and so desperatly in need of sleep, yes, but never that lovely sleepy feeling. I really miss feeling sleepy like a normal person. When i was healthy i never thought about feeling sleepy as a blessing, but now i see it as one of the most cozy and wonderful experiences...

This is common. It may be due to the change in cytokine expression that Hornig and Lipkin have identified at about the 3-year mark.

Some of us have improved our sleep through dietary change and/or supplements. Worth a try if you haven't.