Fatigue or Ordinary Exhaustion?

For the third day in a row,  or should I say evening, I found myself asleep in my chair not long after the sun set, which is pretty darn early since it is wintertime, and aside from the brief awakening to hit the restroom and move to my bed, I’ve slept 11 or 12 hours each night.  This is very different from my usual pattern of seven or so hours of sleep each night.

So what has changed?   Yes, there are lots of demands on my attention at this time of year but I’ve resisted getting caught in the frenzy and my pace is slower, but honestly I don’t think I could speed up even if I wanted to.

I manage to get to work, and I then spend the day at my desk conserving my energy so that I have enough to make it out the door to my car and the drive home.  My job doesn’t require a strong body, just a healthy mind, and maybe all that turning cog action in my brain is wearing me down.  Fortunately I don’t have a long commute and can wrestle with myself to stay awake for the 15 minute drive to home.  At least I recognize when I want to nod off- the urge to pull over to the side of the road and close my eyes for a brief time hits me often – and I’ve learned to roll down my window and suck in the cool fresh air, much like a dog on a long drive would do.  Lately I have felt that way driving to work and not just coming home, and I am now traveling the round-trip version of fatigue.

MS fatigue is very common and most of us will experience it at one time or another, but this is my first prolonged stretch of unexplainable, unrelenting tiredness. I can imagine this is perhaps how Rip Van Winkle felt as he laid down for that long winter nap and slept through his own hardships of war.  Rip slept through the Revolutionary War, whereas I am engaged in my own private battle with MS.  If only I could be like him, doze off, and wake when this is over.

The inability to stay awake and alert is vexing.  More than once I have described MS fatigue as this vignette:

Imagine you are in a deep sleep on your couch and you hear the smoke detector ringing in your house.  You stir a bit and then recognize what the offensive, blaring sound is coming from – oh no, you think, your house may be on fire and you should probably move, but you debate with yourself if you can muster the energy and you slip back off to sleep. That is fatigue – when you want to go, you know you need to go, and yet you can’t.

Fortunately I am not that fatigued right now, but something has certainly taken over my energy reserves.  If the smoke alarm goes off in my house, I would eventually move but it would take a few moments to get going.  MS fatigue, just like this disease, comes in all sizes and forms.  We don’t have to be unable to move to be under this spell. The fatigue can occur without warning, suddenly taking us down for the count, or it can slowly accumulate its ill effects.

For now I will blame my fatigue on the seasons and ordinary exhaustion – take your pick of which one…. either it’s the holiday season that kicked off  with Thanksgiving a few weeks back or it’s the late fall/early winter season of cold, snow and too much darkness and gray skies.  Either way, my get up and go, got up and left.   I sure hope it comes back, soon.

Wishing you well,

Laura

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (26)
  • alchemie
    5 years ago

    You all who are able to sleep that much are so lucky! I’ve always had what they call ‘middle of the night’ insomnia, where you wake up in the middle of the night (after about 4-5 hours of sleep) and cannot go back to sleep. This occurred even before the whole MS thing happened. However, as the day wears on, yes – I do get tired, tired some more, totally exhausted, and so on, so much so that at night, I can never watch a full length movie anymore because I will fall asleep. But! I have never been able to sleep more than 7 hours straight in a very, very long time. So yeah, I think that my fatigue just might be both because even on the 7 hours of sleep night, I’m still just as tired as any other day. Ah well. It is what it is.

  • Ty
    5 years ago

    This has been my most common symptom. When I was in college (more than 30 years ago) and was found passed out at a bus stop, it was Epstein-Barr or Chronic Fatigue Syndrome. 23 years later when my exacerbation made everyone think I had a stroke, MS was finally determined as the culprit.

    My last two careers came with a private office and a high-back chair, so I could have power-naps when I needed them.

    12 hour nights, mid-afternoon naps are still common. Where I really noticed the fatigue was doing physical activities (extreme exercise) that I had always done, but now had to bail at the mid-point or earlier and literally take a nap on the side of the trail, ski run, or in the car, while my buddies continued on.

    If I push to hard, I get this viral-like flu-thing that will lay me down for three days. Last time I wound up in the emergency room twice for pain: it wracked my body so bad, I thought I was dying.

    All the tests say: viral infection – unknown virus. Then I get better. This time it was mental/emotional stress that seemed to trigger it in addition to high-profile project related travel which always poops me out.

    I have since switched from Copaxone to Techfidera. No noticeable side-effects or improvement, but no worsening.

  • Gail-Maryland
    5 years ago

    Hi, is Techidera the MS Pill? Is this for R&R MS? How long have u been on it? Did your Dr, do blood tests before putting u on it? ThanksGail

  • Rhonda
    5 years ago

    I have always had some fatigue, but the last 4 months have been worse, 12-13 hours a night and just cannot get up. I’m wondering how many of you are on Techfidera and if this could be causing the increase in fatigue??

  • Laura Kolaczkowski author
    5 years ago

    Gayle-maryland,
    You might look at Kim Dolce’s blog on Tecfidera and also in the search box type in Tecfidera and read many of the discussions about this drug. Tecfidera is a pill and is one of a couple now – the others are Aubagio and Gilenya.
    I can’t help with your question because I am on Tysabri.
    ~Laura

  • Nathan J. Olson
    5 years ago

    I’ve been suffering this week with horrible fatigue. Some days I’ve slept 15-16 hours. It’s so frustrating! I feel for all of you in the same position. I’m going to be starting Tecfidera soon since Avonex didn’t work for me. Hopefully the fatigue will clear up soon. I hate sleeping through life!

  • Laura Kolaczkowski author
    5 years ago

    Nathan, I sure hope the change of drugs helps. There are so many of us dragging right now, I have to wonder if spring weather might help? hang in there!

  • Sandy
    5 years ago

    My sleep pattern has been all over the chart lately, and yet, I feel like I don’t rest long enough at any given time, to actually REST ! I can get up at 2am to make a bathroom run, and find myself waking up, still on the toilet (Glued to it, by this time) a few minutes to an hour or so later. My entire body feels tired. Like I just worked a double shift (Nursing) and still have not gone to sleep, six hours later…MORE than “I’m just tired”….Absofreakinlutely EXHAUSTED !

  • Laura Kolaczkowski author
    5 years ago

    Maybe it’s the winter weather getting to us all? I haven’t felt truly rested for at least 2 months. I can’t imagine pulling a double shift at work, and I ride a desk for my job.

  • Mspbfh2
    5 years ago

    Laura -stands for ms psychco bitch from hell…the pbfh2 is a very very old nickname from when I worked in a neonatal ICU (one of my friends called herself a pbfh and I said me too, so I became pbfh2…..). Think you had to be there to know how funny it was. When I was dx’d with MS, I said now I’m a pbfh with ms….LOL re the cross stitch, my family says I must be crazy to do it! Just finished a baby blanket for a great niece that took over 300 hrs, but it gives me something constructive to do that isn’t too tiring physically, and helps keep my mind focused without worrying someone dies if I make a mistake. Your posts really help me feel less alone, thanks.

  • Laura Kolaczkowski author
    5 years ago

    300 hours? You are psycho. At least you are not trying to complete a king size blanket, right? I’m glad you found us here because you really aren’t alone in this living with this MiSerable disease.

  • Laura Kolaczkowski author
    5 years ago

    That lead apron analogy is perfect. I sure had that feeling all day long. I hope tomorrow is better for both of us. -Laura

  • Lisa Y
    5 years ago

    That’s a good description of the way MS fatigue feels. I have described trying to get out of bed in the morning with my MS fatigue as feeling like I have a full-sized, head-to-toe lead apron (like the ones used during x-rays at the dentist’s office) completely covering my body, especially my eyelids. My mind can be awake, but it seems an insurmountable task to move or even open my eyes… even with a smoke detector blaring in the background.

  • Mspbfh2
    5 years ago

    I so relate!! I have fallen asleep while cross stitching…good thing the needles are blunted! It is so hard to explain to people esp when trying to follow a conversation and you can barely keep your eyes open.

  • Laura Kolaczkowski author
    5 years ago

    Mspbfh2 (what does that stand for?) – I nod off a lot working on my laptop. It is kind of crazy how easy it is to do the nod. Now cross stitch never grabbed me and I could easily nod off during that just to avoid finishing a piece. LOL ~Laura

  • Theater Geek
    5 years ago

    Laura you mentioned in a reply to another comment about exercise being the one of the best things to help fatigue…and you are so right! My form of exercise isn’t the normal though lol…one thing that helps my fatigue (and other MS issues I may be having at the time) is theater. When I’m in rehearsals for a show I have no problems when I’m there…I’ve even started a show in a flare up and the symptoms I was having were gone during the time I was in the theater. Even tech week (also know as heck, not the word used BUT lol, week isn’t bad for me. But when we’re in a cabaret there is a lot of high impact dancing. I’m on Provigil for fatigue and it only helps a small amount and only if I take it with caffeine. Fatigue and a high energy 5 year old are a difficult combination but I find a way to keep up with him. Hope all of us find some magical energy reserve somewhere soon!

  • Laura Kolaczkowski author
    5 years ago

    I love that performance angle works for you – nothing like being ‘up’ to keep you feeling up. I find singing – as bad as I can be off key and loud – makes me feel better. I try to sing along with the radio on my morning drive to work just to get some energy flowing. If the shows are musicals, that could be a double dose of feeling good. 🙂 ~Laura

  • karen
    5 years ago

    Thank you for putting this into words. I can explain this but it never seems real until someone else puts it in their own words too. I sit here trying to not fall asleep at my desk, not wanting to rely on caffeine or five hour energy. Thank you!

  • Nick
    5 years ago

    I understand the fatigue issue all to well. I struggle with the fact that I can’t do what I used to be able to do. It doesn’t seem to matter how long I sleep, when I wake up I am already tired. A lot of days my legs get so tired they ache. I don’t know what to do or what to push my doctor to prescribe to help. I thought that losing weight would fix it but I’ve lost more than 70lbs since September and nothing has improved. I still have a lot of weight to lose so maybe it will help in the long term but for now I am just tired of being tired. To any of you reading this, I am happy to hear stories of what worked for you I’ll try pretty close to anything

  • Chrisite
    5 years ago

    I weigh 93 pounds and the crushing, annihilating, life destroying fatigue has completely ruled my life since 1996. I’m physically able to sit upright and function maybe 1-3 hours a day max, and mentally coherent perhaps an hour longer than that before I become completely retarded (that’s not a slur or slang; my neurologist says it’s the actual, correct medical terminology for “cognitive slowing”). And mentally I mean once the fatigue takes hold, I’m transformed within less than 60 seconds from my formerly creative, eloquent, rational, logical self to a gibbering, stuttering, rambling, babbling village idiot. And the words of whomever may be speaking to me suddenly turn from English to something more akin to Swahili – a language that, alas, I never learned. The frustrating part is that the speaker seems never to notice my deer in the headlights stare or that I’m beginning to slide down in my seat and my eyes are mostly closed despite struggling to widen them and blinking repeatedly. That’s a good day. Bad days, when fatigue hits in the middle of a conversation I repeat myself over and over, trying to explain what I mean and getting angry when I feel like the listener doesn’t understand and cuts off my 5th attempt and then I start sobbing and apologizing. Yeah. That mental fatigue. Almost worse than the one that comes at me suddenly on a Saturday afternoon on a crowded freeway at 65 mph like a tsunami. I see it coming but there’s only about 30 seconds before the gigantic wave slams into me, pulling me under and buffeting me about, dragging me to the bottom as I struggle to rise to the surface of consciousness even as I lose all awareness. Or struggling to appear “normal” in the checkout lane when I’m suddenly feeling like a tree limb swaying in a high wind as I fade away into a vapor if smoke. Or spending every day for months lying weakly on the sofa, silent tears coursing down my face as I feel the life leaking slowly but steadily out of me like bleeding out of my life force. That fatigue. What an infuriatingly inadequate word to describe something so completely devastating. And no one but another MSer will ever, ever even begin to understand the way it really feels and how it powerless we are to “push ourselves” to keep going. I’ve tried hundreds of times, and always ended up simply dropping in my tracks -literally. It’s like your car running out of gas on the freeway. You can mash down on the gas pedal all the way to the floor and hold it there but when that last drop of gas is gone that car stops and it’s not going to move any further. I’m pretty sure the fatigue is the worst part of it for me -though the hideous muscle spasms are a close second. Did I mention how I hate having MS? :o)

  • Laura Kolaczkowski author
    5 years ago

    Nick, that is a great weight loss …. we should be asking you for tips. Did you include exercise with your plan? That is one of the best tools I know to use for fatigue, but even that isn’t always enough. ~Laura

  • Laura Kolaczkowski author
    5 years ago

    Maris, I hope this helps if he hears it from someone other than you, he might understand fatigue is a very real problem with MS. Good luck – it’s hard to get unless you experience it yourself. ~Laura

  • Maris
    5 years ago

    I’ve been going through a fatigue thing the past week. My husband thinks it starts with my hour swim every morning and doesn’t believe that MS fatigue is something else. While I’m swimming,my body is full of energy and my mind is usually clear and focused. There are days, however, when my mind is already unfocused from the second I force myself out of bed in the first place. Today I seem to be a bit more lively ;-). I’m going to read Laura’s blog to him and see if he gets the idea a little better. Thanks Laura and Donna. Have an energetic day ;-), Maris

  • Laura Kolaczkowski author
    5 years ago

    Chiriste, Pardon me but I have to admit you made me laugh out loud with the spot-on descriptions of fatigue. I have been experiencing that same go/no-go gas pedal for my brain that you describe so well.

    You’ve thrown out a bunch of great analogies of what it feels like – thanks for adding to my list. I hope you and I have a good day. best, Laura

  • Donna
    5 years ago

    MS fatigue. I’ve been dealing with MS for more than thirty years and fatigue has been my major symptom. I was a banker and when I would get worn out simply trying to add, I started to be concerned. But I pressed on.

    Thirty years ago disease modifying drugs were a thing of the future. I would come home and sleep for at least an hour before dinner. I had to make the difficult decision, do I continue to work or have children. You see this was before the disability act was even thought of. So disability payments were not an option. But I wanted children.

    I stayed home and we would all take a nap each day. A practice I still do today. It became a joke in hour house, mom is having a bad day! But it’s nothing a thirteen hour sleep can’t help.

    When asked to describe the fatigue, this is my best answer. Do you know what a balloon looks like when all of the air is let out slowly,then it is just a flat piece of plastic. That is what MS fatigue feels like for me.

    Some days it is totally debilitating. But it’s nothing a thirteen hour sleep won’t help.

  • Laura Kolaczkowski author
    5 years ago

    I did a twelve hour sleep this week and it still didn’t feel like enough- maybe I should have gone for that lucky 13? Thanks for sharing your experiences. ~Laura

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