MS Fatigue and Lassitude

Look all over the net. Look in books. Talk to people with MS. Pretty much everyone will say fatigue is the most common and sometimes most debilitating symptom of Multiple Sclerosis. But what exactly is fatigue? What causes it? Well, there are many different causes but first you need to identify what kind of fatigue you are dealing with. What kind? Yup! There are two basic types of fatigue in MS and it’s very important to determine which kind you may be experiencing as it greatly affects how you can manage it.

So what are the two types of MS fatigue?

First let’s just get a basic definition of fatigue so we have a sort of “baseline” to compare things to when defining these types of MS fatigue.

Fatigue: “Weariness from bodily or mental exertion” –Dictionary.com.

What does this mean? Well, basically, it means you have overworked yourself (physically or mentally) to the point that you are out of energy; you’re exhausted to the max. Why then, if you have MS and haven’t done anything of the sort, do you feel fatigued all the time? Because you’re most likely not experiencing the “normal fatigue” that a healthy individual experiences! I have overexerted myself many times in my life either working, hiking, or studying and that is nothing like MS fatigue; MS fatigue is more like being horribly sick with the flu and feeling like your body just wants to stop functioning and collapse. That is where the term “MS fatigue” is thrown around but even that is not specific enough.

Fatigue due to MS symptoms & difficulties

So, when we talk about “basic MS fatigue” what we are talking about is fatigue due to MS symptoms and the difficulties they can cause. Maybe you’re not getting enough sleep because you have to keep getting up throughout the night to use the restroom? Perhaps you sleep a full 8 hours but it wasn’t good sleep because you couldn’t turn your thoughts off? Maybe you have certain physical limitations that make completing normal tasks seem like a huge endeavor because they take more time and energy? Things like that can be the cause of MS related fatigue and might simply require some lifestyle changes to improve your energy levels. Seeing an Occupational Therapist can be great for this as they can show you how to work with your disability to find easier and more “energy efficient” ways of completing various tasks. If you have bladder issues and have to keep waking up throughout the night to use the restroom a doctor can prescribe you something like oxybutynin to help control your bladder. Easier yet, don’t drink anything for 1-2 hours before you go to bed! Most the causes of this kind of MS fatigue may only require some lifestyle changes that can greatly help.

Lassitude

But what if none of these things are issues for you? No matter how well you sleep or how easy you try to take it, you’re just always tired! Sometimes even right after waking up from a great night’s sleep! This is what is called “lassitude”. Lassitude is unique to people with Multiple Sclerosis, the cause is not yet known but there are specific characteristics that help define it separately than “basic MS fatigue”. Lassitude usually occurs on a daily basis regardless of how well you slept and tends to get worse as the day progresses. It can come and go randomly at any point in the day and usually is made worse (or started) by exposure to heat or stress. Finally, it’s said to be more severe than regular fatigue.

Like dragging an anchor around

I can tell you that I have lassitude and not just MS fatigue (not to mitigate how horrible any form of MS fatigue is) and it makes life miserable. Nothing I did helped my fatigue, it was just always there, like I was dragging an anchor around or giving a piggyback ride to a car! It was affecting my quality of life and what I could actually do. Then I started taking Nuvigil and it changed everything. I wouldn’t say I ever feel “normal”, it doesn’t give me a “boost” like an espresso, but it helps keep me awake so long as I manage my sleep and stay busy after taking it. Some people say “Provigil” (the predecessor to Nuvigil) helps them better. There are a few other medications that can be used but that is up to you and your doctor. As I always say, what works for one does not work for all. You have to find the medication that works for you and figure out if anything else that you can eliminate (or change) is adding to that fatigue.

Basic MS fatigue can still affect you

You see, even if you have determined that you experience lassitude, the causes of basic MS fatigue (related to MS symptoms) can still greatly affect you. This is why it is important to try to eliminate any contributing factors to your fatigue before moving on to something like medication, which can sometimes cause unpleasant side effects. When I first started taking Nuvigil, I would get the worst headaches; so bad that I stopped taking it for a while. Some say it’s always like that at first but then gets better after a while. So I tried it out again and like going through withdrawals backwards I have been able to use this medication everyday without any side effects anymore.

How do I manage fatigue & lassitude?

So for me? I take Nuvigil in the morning after a solid 8 hours of sleep and then try to stay as busy as I can throughout the day. If I just sit around and don’t keep moving I start feeling my fatigue get the best of me and sometimes, even if I am keeping busy, I have to drink a cup of coffee or two in order to make it through the day. Some people with MS react poorly to caffeine but not so much for me anymore (it used to give me really bad restless leg syndrome). I think staying as busy as you can is important because staring at the TV or computer all day can lead to boredom and cause you to grow tired due to a lack of “stimulation” to the brain. No scientific information there (that I know of) that is just how it feels in my own experience. Exercise may be difficult for many people with MS (especially when you’re dealing with fatigue in the first place) but for many people with MS they say it helps once they have a consistent routine down. I hate exercising but I would be lying if I said it did not help with my fatigue. I will talk more about exercise in another post but for now I just wanted to differentiate the two types of MS related fatigue.

Touching back on what I said at the beginning of this article (pretty much everyone will say “fatigue” is the most common and sometimes most debilitating MS symptom), I can tell you that in my experience, if I could make just one MS symptom go away forever, it might very well be my fatigue. The work required to manage my fatigue is sometimes fatiguing in itself!

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 (28)
  • SuzyF.
    1 year ago

    When I tried to explain my fatigue to my mom she advised me to “take a nap”. I told her this fatigue is NOT resolved by any naps or even sleep. I said it’s so bad that if she offered me a million dollars just to walk to the corner I’d look her straight in the eye and tell her to “keep it” because I couldn’t make it that far.

  • Matt Allen G author
    1 year ago

    I think that is one of the most difficult things to explain to people who are otherwise healthy. But he is not the same as being tired.

  • Linda
    1 year ago

    Unless someone suffers from lassitude, they cannot understand it at all. It was one of the first symptoms that I had but not one that I complained about that much. When I did after my diagnosis, my neurologist put me on Provigil, which was a great help. Then insurance would not pay for it. I found if paced my self I could manage most of the time. If I had a couple of busy days, then I was going to be paying for it for at least a couple of days if not more. I had to start a new medication this past January. Now I wake up just as fatigued as when I went to bed. I usually sleep well. I have started back on the Provigil and it helps some but not like it did. I still can go to sleep at the drop of a hat. I hate this. This is no way to live. I would just like to feel normal again. My left leg is numb and I can deal with that but the lassitude is the pits.

  • Matt Allen G author
    1 year ago

    One of the ironies of my life is that I feel deadly fatigued all day but then when I lie down to sleep I can’t. Provigil didn’t help me but Nuvigil did which is weird because they are pretty much the same.

  • LisaB11765
    2 years ago

    I also suffer from lassitude. I get very frustrated sometimes because I have to plan ahead to visit friends or go walking around the park. The reason is it feels like work. It takes the joy and fun out of what are perceived to be normal activities. I have scoliosis and compressed discs, so I am limited to what I can do. I can only lift lightweight objects and only with my good hand. I can’t sit, stand or walk for long periods of time. I do stretches and toning exercises just to be able to get out of bed. So I know my limits and I accept them for now. But I’ll never stop fighting to have my quality of life be the best it can be.

  • Matt Allen G author
    1 year ago

    The most difficult part for me is waking up fatigued; makes doing all the little things I NEED to do so much more difficult because it’s like I started my day on a bad foot.

  • Pirwin01
    2 years ago

    2 Months ago I had procedure done. TVAM (Transvascular Autonomic Modulation). I had this done to help my fatigue. It also helped with other aspects of my MS. I also had a stem cell procedure at the same time. Before I had this done I was lucky to get 2 hrs a sleep at night. I could hardly keep my eyes open during the day, but come night when I went to bed I was wide awake. Now I am sleeping 5-6 hrs a night and I am wide awake during the day. My energy is back. I am still not 100% but I have started to do more activities that before would have taken every thing out of me. I have also started to walk more and even started to go for some short bike rides around the neighborhood. This has definitely been a life changer for me.

  • Matt Allen G author
    2 years ago

    How interesting, I have never really heard of that being used for MS. I do wonder though, if you had stem cells done at the same time, how do you know which is helping? Not that you care, feeling better is feeling better but personally it would bug me to not know which one did the trick! Either way, glad to hear things are turning around for you!

  • Cathy Chester moderator
    3 years ago

    I’m so glad you wrote about this Matt because it’s so helpful to remind ourselves that our MS fatigue can be from MS and other, perhaps external, factors. Even for someone like me living for 30 years with it I have to re-examine the fatigue factor. Thanks for the wonderful reminder!

  • Matt Allen G author
    3 years ago

    For EVERY MS symptom it’s important to not instantly jump to the conclusion that a new symptom is due to MS, we can still get sick in other ways too!

  • skcullers
    3 years ago

    For me it is comparable to having the worst jet lag ever!!!

  • Matt Allen G author
    3 years ago

    I imagine, though, I never seem o get jet lag, even when coming back from Europe, I go to bed tired and wake up feeling “fine” haha….

  • JaRo
    3 years ago

    That was a great article. I just wanted to add that fluorescent lights REALLY affect my energy level. If I spend much time in a store, I feel like I’m walking thru thick mud.

  • Darlene
    1 year ago

    I AVE NOTICED THAT FOR YEARS! WHEN i AM IN A STORE WITH LOTS OF FLOURESCENT LIGHTS, i FEEL LIKE THE energy is sucked right out of me.
    I thought it was all in my head (LOL). or due to lupus, because drs. thought I could have it.

    It is a very strange experience. Sorry for the caps in the beginning!
    By the wime I’m about 1/2 through I am dragging, sometimes literally.

  • Matt Allen G author
    3 years ago

    Interesting – I mean light DOES affect the production of melatonin, but I am not really sure about how DIFFERENT TYPES of light effect it

  • Terri
    3 years ago

    Thank you Matt. I like the clarification about the different types. Lassitude describes how I feel every day. Without provigil, I am a bump on a log and I get nothing done. I’m not ‘normal’ with it, but at least I can get some chores done. I’m tired when I wake up and tired when I go to sleep. I describe the fatigue as being worse than what I felt when I went through chemotherapy. That helps people understand that it is severe and profound.

  • Matt Allen G author
    3 years ago

    Yeah, people don’t get that “MS fatigue” (lassitude) is not at all the same as “just being really tired”, the fatigue from Lemtrada was nowhere near as bad as some of the fatigue I was used to…

  • linda
    4 years ago

    I have had ms for 20+ yrs. I have experienced fatigue from the beginning but in the past year have felt like ,no matter how much I sleep at night, I am so tired when I wake up I feel drugged. I drag myself up every morning,take provigil, & try to get thru the day. I usually feel like my legs have weights & my upper body looses co-ordination as the day goes on. I guess it would be worse without provigil,who knows. I would like to know if anything would help that dreaded morning feeling which I now know has a name & is not “imaginary” thanks to you caring enough & taking the time to share your thoughts & knowledge!

  • Matt Allen G author
    4 years ago

    The only thing that KIND of seems to help me in the morning is I wake up, jump out of bed, take my Ritalin, go to the garage/gym and work out for an hour, have a coffee, take a cold shower and eat breakfast. Then I just stay busy because as soon as I stop moving I start falling asleep….

  • Candy
    4 years ago

    I’ve had RRMS since ’95. I learned form the very beginning that my body hated drugs as I had terrible reactions to first Avonex and then Copaxone. I worked till ’02 and had a part-time job till ’07 when the company moved to TX. I used to take a three to four hour nap every single day due to the debilitating fatigue I had. The bad thing was that when I got up from that nap I only had about 1 hour and I’d be tired again. I was sleeping my life away…literally! In Nov of ’10 I decided to go on a diet that I had seen on a couple of MS sites called the MS Paleo diet. I decided that I would try it for at least a year to see if it worked and I am still on it. It is restrictive with no sugar, no dairy, no wheat/gluten, no red meat/pork and no beans/legumes.And yes, I went cold turkey!! Within two months I realized that my naps got shorter and then nonexistent. I did a chair “happy dance” because for the first time in years I don’t need naps!! I eat chicken, turkey and any kind of fish or shellfish and all the fruits and vegetables I want. No peas (never ate them anyway) or lima beans but no great loss. I have no fear of MRIs either but I am a big needle phobe so no loss there either. I take vitamins, supplements and make my own tinctures and tonics for different symptoms. The MS has been stable has been stable with no new symptoms for 7 years now so to me it was worth giving up cheese fries, sour cream on everything and sweet tea and Pepsi! Now I drink Zevia and have found Dalya cheese. And a great side effect of eating better was I lost the weight I gained from sitting all the time. I have great energy and I wish I’d done it sooner is all. You are really stronger than you think you are!!

  • Candy
    4 years ago

    Matt, try just three…to start. The biggies are no sugar, no wheat and no dairy! There are plenty of swaps for that. Grass fed beef instead of regular. You will feel better with that. Look up Dr Terry Wahls…she came back from secondary MS and went from using a power chair for years to walking and being normal! Her protocol is different.

  • Matt Allen G author
    4 years ago

    I WISH diet did that for me! I tried the Paleo diet for maybe 5 months but it was so hard to find things to replace everything the diet removed from my life…. I was starting to feel weak so I gave it up. Im not eating too well lately and I will explain that in an article to come. SOON, I hope to be back on track!

  • Lamarfreed
    4 years ago

    It is even more complicated than this. Researchers are finding that there are many varieties of fatigue, each experienced differently by different people with MS.

    All of this is based on the fact that our brains run out of the basic elements needed to drive the complex functions that are involved in normal human activity.

    If you would like to read more about fatigue please visit msandmentalhealth.wordpress.com No ads, no services offered, just in depth information.

  • Nomdeplume
    2 years ago

    Thank you, Lamarfreed. I have been searching for answers to this question of what is the underlying cause of (MS) fatigue? I look forward to seeing what the site you referenced has to offer.

    Lisa

  • Lisa
    4 years ago

    Thank you for this. I get so weary of trying to explain that, no, I’m not just tired. With those people who really do care what I mean, I’ve been saying “I just feel heavy, like I weigh 500 pounds.”

  • Matt Allen G author
    4 years ago

    Yes, it’s so hard and TIRING to explain. “I feel heavy” or “I feel tired like when you have the flu, my body is trying to power off” are my two typical quick answers.

  • north-star
    4 years ago

    I’ve never heard the term “lassitude”. Sounds like “lazy”, not sure I’ll use that term if I talk about why I’m stuck at home but it’s good to know it’s a genuine MS symptom. This summer was my first experience with fatigue that was unshakeable. Parking lots were the worst, big ovens that instantly undid hours of air conditioning. When I got hot I was done for the day. And it was hot every day and many nights.

    What scared me was how clumsy I was when I tried to soldier through tasks that suddenly went from challenging to very difficult or impossible. If you don’t know why you’re struggling, it’s easy to get completely discouraged. Thank you for writing about this. Paradoxically, I feel much better!

  • Matt Allen G author
    4 years ago

    Lassiture/Lazy – never thought of that haha… But yes, I just moved from SoCal, when it’s an average of 110F for months on end, those feelings you described? That was just “normal” to me… That is why I moved, I couldn’t function there.

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