Fatigue vs Tiredness

[JulesL5S1]

I'm a limbo lander and my new genius neuro just dx'ed me with narcolepsy w/ cataplexy.   He did this based on how I described my fatigue.  He said I was tired not fatigued.  I've since been researching narcolepsy & cataplexy.  

Most of us complain about being fatigued but we don't go into details.  My new neuro thankfully asked for details.  As narcolepsy can be caused by damaged cells in the brain it is possible that a new lesion (whether visible on the MRI or not) could cause this.  Of course, if the area heals, the major problems may go away and just a lingering problem remains.  

My personal research let me see how this could in fact be related to MS and caused by a new lesion.  It also helped to explain why I didn't have this problem until 2003 (some early signs of cataplexy) and then more severe signs of narcolepsy in 2006.  (Maybe an invisible to the MRI lesion formed, healed, didn't stay healed but still remains invisible to the MRI)

From the book "Sleep to Save Your Life" by Gerard T. Lombardo, MD (dewey decimal library system 616.8498) the author goes into detail about fatigue vs tiredness.

"Distinctions should be made among fatigue, simple tiredness, depression, and excessive datytime sleepiness.  The word "fatigue" is often used interchangeably with these other complaints and conditions but they are not the same.  Fatigue can be associated not with sleepiness but with weariness, lack of energy, tiredness or weakness, especially that associated with aches and pains in the joints and muscles.  Fatigue does not make you sleepy; it makes you miserable.  You may not be sharp and alert, but neither are you really tired.  You don't have an irresistable urge to shut your eyes and drift off.  You have a strong desire for relief from the discomfort called fatigue.  You wish you could get some sleep to get away from the feeling, not necessarily because you need the sleep itself.  The confusion that results is enough to occassionally send treatment off on an a entierly wrong track."  (page 55)

I found this interesting.  Just like my new neuro says, I am tired not fatigued.  (of course now that I am on Provigil it is very obvious my legs and arms aren't working but that is for another appt.)

Narcolepsy is still being researched.  Some researchers think it is an autoimmune disorder, others that cells in the brain are damaged (i.e. by a lesion), there appears to be a connection to the HLA marker, etc.

Narcolepsy in the US is common - 1 in 2,000.  

A key part of treating MS is treating the symptoms.  You really could have MS and/or you really could have narcolepsy.  The Provigil which is used to treat narcolepsy has done a wonderful job for me.  It has given me back a significant portion of my life that I had lost over the last year.  It should also help with ongoing dx.  The problems with my arms and legs are not being caused by tiredness, there is something else going on.

I've been amazed by what I learned about narcolepsy and cataplexy.  It doesn't rule in or out MS.  You can have both.  I hope others find this information helpful.

[Lulu54]

This discussion resonates with me.... it is so good to read your experiences.  For me, I have spent all of this year waking most mornings with the thought - "please let this be the day I get motivated and feel good to get things done." Then I end up unable to do much at all. I get through my work day and a few extras but by the time dinner is done I just want to sit.  And forget about the weekend when I really want to do nothing.  I'm not sleepy tired - as yo uknow from my online activity here at all hours .... I'm just worn out.

It is so good to have a better understanding of this fatigue factor.  Thanks everyone for sharing.

my best,
Lulu

[Deb61]

Fatigue is what kills me--I feel bad most of the time.  It's not always pain--it's a yuckiness that's hard to describe.  There's no amount of sleep that gets rid of it--in fact, too much sleep increases this bone-rotting ichy feeling.  However, getting on with things doesn't help either.  

I wonder how the Provigil works--being designed for narcolepsy.  For some reason, it helps (doesn't eliminate) the fatigue.  Without this drug, I cannot function.

Deb

[essdipity]

You're right, this is indeed interesting.

I'm not depressed and I don't sleep excessively (most of the time). So that leaves tiredness vs. fatigue. I'm not sure I can really tell the difference. There are days where I wake up after a good night's sleep and lots of plans for the day, but all I can do is sort of groan, knowing I'm down for the count. I do the basic things because there's no one else to do them, but that's about it. On those days I take a 3 or 4 hour nap, and then go to bed at 9 or 9:30, totally wiped out, and nothing whatever accomplished. That night I sleep like the dead. The next day I may be fine and resume all my activities with just the normal amount of tiredness.

Some days I feel relatively energetic, other days I'm tired and sort of limp along, and then there are those wipe-out days. The 'tired' days sometimes are explainable by lack of decent sleep the night before, since that can be a big problem. But most of this stuff just seems to be random. I can't figure it out and I've more or less given up trying.

ess

[Quixotic1]

This is a very important discussion.  I think it is a good thing to distinguish between these various labels, Fatigue, Tiredness, Excessive Sleeping, and Depression.  I find that I have all of these, in various combinations.  Sometimes more than one are acting up at the same time.  I can't always completely distinguish one from another.

As for me I clearly have that inexorable, disturbing, uncomfortable thing your neuro calls fatigue.  I may be very alert and very motivated to do things, but just the smallest effort sends me back into my chair.  Sometimes I can't overpower it at all.  sorry my shift key is going.  With the fatigue that I first identified with the chronic vertigo and then the additional fatigue that I identified with the first symptoms of MS, I am miserable.  All effort just seems to be too much.  When I do try to push through it anyway, I get to the point where I just collapse with my head roaring and my arms and legs weak, often crying from the frustration of not being able to accomplish the smallest thing.


On top of the baseline fatigue, I get extra tired after a day out -say with the long drive to see my neuro.  that requires extra rest and sleep.  that feels like it is in addition to the fatigue that has slowed my life to a halt.  This is clearly in response to increased physical activity.

The periods of excessive sleeping (12 to 16 hours a day) come in periods of several weeks.  those I cannot help.  It does not feel like depression.  I don't feel like I am trying to escape, nor feel a lack of motivation.  I mean to get up and do things and then wake up 4 or 5 hours later, having not been aware of falling back to sleep.  Or I sit down to rest for a moment and lean back, just to wake up a few hours later - still fatigued, but not so tired.

I also have periods of depression which encompass some of the traits of the others, but I can tell that then I also have an aspect of apathy, loss of desire to do the things I enjoy Iike post here, or talk to friends.  I also find that I am more angry at small things and more irritable and more likely to think about things that make me cry.  The depression gives me an "overlay" of sadness, anger, futility, irritability, and desire to escape.  during those periods I also sleep much more, but I can see that I deliberately retreat to try to sleep so that the time will pass.

I would say my overwhelming problem that is almost ever-present is Fatigue.

Thank you for bringing this up.  I would like to hear from other people about what they feel they have and how it affects them.

Quix