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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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I sleep, therefore I am..

Messages
84
Location
Tennessee
Hello Everybody,

I would like to ask a question. Is there a difference between sleepiness and fatigue? The reason I am asking is to make a distinction. I've always describe my symptom as fatigue. My body is not fatigued, it could run a marathon. Here's where I'm going. I stumbled upon an article that was about narcolepsy. The more I read, the more it grabbed my attention. So, I went to a forum similar to this one and read post of people w/narcolepsy. I was really shocked. Quite a few people described their sleepiness/fatigue??? exactly like mine ! Like they had been drugged but their body was fine. Some said they developed it after having strep throat. That's me... Even though it usually happens to younger people it can strike older people. I realize the only way to determine it is to do a sleep study test.
I would just like your opinion.
Thanks :)
 
Messages
68
Location
New Jersey, U.S.
I tend to think of sleepiness as the heavy-eyed feeling of wanting to go to sleep. Fatigue can be physical and/or mental tiredness/exhaustion-- it feels to me like there's just no energy. I have both much of the day.

I used to have narcolepsy-- when I was in my thirties. I'd actually fall asleep driving. Sitting in a quiet place was likely to induce sleep. If your body could run a marathon, I'd certainly question an ME/CFS diagnosis. (Forgive me if I'm misunderstanding what you said.) Sounds like it's worth investigating the narcolepsy. There's a medication for narcolepsy: Provigil. It helps the brain to stay alert. (I have taken it and it kind of revved me up-- got a lot done and then crashed because I over-rode my body's signals to Stop and rest. But I think for narcolepsy it just helps keep you awake.)

Good luck with this. I hope you find something that works for you.
 

sleepy237

Senior Member
Messages
246
Location
Hell
I have narcoleptic-type onset of falling asleep at times, but I really think it is an intense form of a CFS crash. The difference between sleepiness and fatigue as in CFS - fatigue is that CFS fatigue is chronic, and the body is also in a fatigued state. The drugged feeling I can relate to also, but I can't relate to running a marathon lol. You may indeed have some kind of sleep disorder, from what i understand narcolepsy involves a paralysis of body too, hence the dangers faced by people with narcolepsy. There may be milder forms, but I think Neurology/Sleep study would be a starting point. good luck ~Sleepy
 
Messages
84
Location
Tennessee
Thanks for the replies.... I over exaggerated the part about running a marathon. I was trying to make a point that my body isn't effected most of the time...It's chronic because I've had it for almost two years.. I know that sounds odd but when I think of fatigue I think of all over fatigue head to toe.... I've tried explaining this to the doctors I have seen but it has become pointless. Out of all the doctors I have seen only two really know CFS....One said atypical CFS and the other said if it is CFS it is secondary...what ever the heck that means. I realize CFS is difficult to dx and its usually given after everything has been ruled out so I guess my next option is to rule out narcolepsy.
Thanks for your help
 

helen41

Senior Member
Messages
567
Location
Sleepy Hollow Canada
I was evaluated for narcolepsy, although I was sure I didn't have it. I think a significant difference is that with narcolepsy you simply fall asleep. What I experience is an irresistable urge to sleep, or close my eyes, I can't really tell which, but I have warning. I used to have to pull over to rest, but would never fall asleep driving. I take provigil and am much, much better with it. It doesn't make me energized, it just takes away the feeling of my thoughts having to fight their way through cotten batten, and I don't have those 'shut-downs' nearly as often.
 

illsince1977

A shadow of my former self
Messages
356
I've always been confused by the word "fatigue" too. I think the sleepy feeling is more accurately termed somnolence. But don't really know. Even asked my CFS doc once, "What do you mean by fatigue?" I would just call what I feel severe lack of energy, but still I can't sleep. I used to have that heavy fall asleep at the drop of a hat years ago, but was on heavy psych meds then too and always assumed they were the cause. Now no psych meds, no sleep. So, go figure!!! I really hate these words like fatigue and malaise. What the heck do they mean, anyway? Doctor conveniences attempting to quantify, abbreviate and medicalize the indescribable, I suspect. Grasping at straws.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I tend to think of sleepiness as the heavy-eyed feeling of wanting to go to sleep. Fatigue can be physical and/or mental tiredness/exhaustion-- it feels to me like there's just no energy.

That is how i think about those two terms too. I can have extreme fatigue but not have sleepiness, I can also have sleepiness without fatigue ... sometimes I do have them both at once. To me fatigue is when I feel drained, drained of energy.

Then thirdly, there is exhaustion which is completely different again. Exhaustion is what all CFS/ME patients are also very familiar with, where you just cant do anything.
 

Tia

Senior Member
Messages
247
Haven't read the text, just wanted to say that the headline sounds awesome! :D Right on the money there..