Some Things I Wish People Knew About MS-related Fatigue

Some Things I Wish People Knew About MS-related Fatigue

Of the many symptoms that plague those of us with Multiple Sclerosis, one of the most common is fatigue.  It’s such a common symptom that the National MS Society estimates that fatigue affects between 75% and 90% of those with MS.  Sadly, fatigue is a symptom that can be hard to comprehend if you haven’t actually experienced it.  While the topic of fatigue has been covered a lot, I wanted to write something that could be shared with those who don’t have MS, those who may not understand fatigue.  Basically, some things that I wish everyone knew about fatigue.  So here we go!

  • MS-related fatigue is NOT the same as being tired.  You are tired when you’ve expended a lot of energy or had a long day.   Our fatigue is not caused by losing out on some sleep or overworking ourselves (though doing either of those can certainly make it worse), it is present no matter what.
  • For me, when fatigue sets in, it feels like my entire body is weighed down.  Like I’m submerged in an invisible layer of quicksand that makes every move extremely arduous.  The simplest of tasks becomes incredibly difficult.  I could be lying on the couch and just trying to reach for the remote control can seem like a near impossible task.  That’s something that I don’t think people understand.  It’s not just that I’m too exhausted to go do something, I’m too exhausted to do anything.  Simple tasks like taking a drink of water or going to the bathroom become astonishingly difficult for me.
  • A common meme on the internet proclaims that people with Multiple Sclerosis expend five times as much energy as a normal person.  While I haven’t seen a reference to any science behind that, it’s still a great way of explaining what fatigue feels like to us.  It takes so much for us to do something that others might take for granted.  If you have or know someone with MS, than you’ve no doubt heard about the Spoon Theory, another great example of what it’s like to live with MS that speaks specifically about fatigue.
  • No amount of sleep or rest will help my fatigue.  Maybe all I can do is sleep or rest, but that doesn’t mean that more of that will fix the problem.  Remember, MS-related fatigue isn’t caused by something I’ve done, it’s caused by damage to my nerves and brain.
  • Fatigue is something I encounter at some point every day of my life.  Sometimes that means I will wake up fatigued, making it hard to get out of bed and start my day.  Many times it will hit me in the afternoon.  It can last all day or for a few hours.
  • It can come on suddenly, which means I may have to cancel plans on short notice.
  • Physically, in addition to feeling weighed down, my body becomes weak and tingly.  That weakness leads to falls and also dropping things.
  • While fatigue can happen to me almost randomly, some things are guaranteed to bring it on, like a change in temperature or stress.
  • Fatigue is not just a physical issue, it makes my cognitive problems worse too. The fogginess, the confusion, the memory lapses that I experience because of MS all increase if I am dealing with fatigue.
  • Fatigue is one of those invisible symptoms we deal with, which means many of us have to deal with people, including friends and family, believing that it’s not a real issue.  This leads to other problems like depression and loneliness.  When we do mention it, we unfortunately often have to hear others say something along the lines of “oh, yeah, I’m tired too, I understand”.  I’m sorry, but you don’t.  You have a choice in being tired, we don’t.  There is perhaps no more infuriating of a situation then this one, when you discuss your fatigue and someone else says they are tired.  Again, it’s not the same thing.  I’ve been tired before I had MS and trust me, it’s different.  The exhaustion I felt after running a marathon could not even compare to what MS-related fatigue feels like.
  • MS-related fatigue is a big reason why many people suffering from it end up leaving their job or why their performance begins to suffer.  According to the National MS Society, fatigue and cognitive issues are the two main culprits when it comes to people with MS having to leave work.
  • An example of an all-too-common fatigue scenario for me is waking up with some big plans (for me, let’s say that means trying to clean the kitchen, maybe even just emptying and loading the dishwasher) and then being completely unable to do it.  To have zero energy to be able to do anything and have to just lay there.  It’s absolutely demoralizing to me and it happens at the very least once a week, often more.  Having fatigue feels like having your life stolen from you, but you are still awake to see it going by without being able to partake in it.  MS-related fatigue makes me a prisoner in my own body.

Those are some things I wish people understood about fatigue.  Thanks for reading and sharing.  As always, I’d love to hear everyone’s thoughts on fatigue, so please hit up the comments!  – Devin

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 (99)
  • mrsaristotle
    4 weeks ago

    my family simply dont get it why i am ill with fatigue. I only have to visit my GP which i did the other day. The next day I am totally wiped out in pain can barely walk so use my electric wheelchair. It feels like the worse flu you have ever experienced.

    The noise in my head buzzing, the pain in my eye, the body that simply is not going to respond to anything. Its like its shut down. The pain in spasms and fizzing and burning all because i went out to the doctor.

    I hate going out. I dont want to go out. My family invite me and i find it all too much. I am PPMS and about 6.5 on the EDSSscale. I dont want to end up 7.5 any day soon, so i want to reserve some of energy and motivation before i totally give in.

    My sister said i think its your MUSCLES she said maybe you need a bit of physio after i told her i felt awful after an hour out.

    If i had the energy i would have banged my head.

    Physio yes well lets just move on folks nothing to see here lol.

    Just sitting in the car, being moved from car to wheelchair, sitting in the waiting room with my legs dangling all contributes to my fatigue…you can feel the life and energy draining out of me, leaving nothing but pain in its wake. Pain no one can see or understand. Ache in my back from sitting up, legs tingling and fizzing with burning patches the need to pee, my brain slowly switching off and my words becoming garbled as its just too hard to find them in my tired brain. so i turn to my careworker who knows me now and just have to look at her, and she speaks for me.

    thats my life, my fatigue, my day after a morning out, it has nothing to do with a physio coming in and giving me a massage for tired muscles….jeez give me a break.

  • Devin Garlit moderator author
    3 weeks ago

    Thank you for sharing mrsaristotle, a lot of us here understand exactly what you are going through. It’s so hard for though who haven’t experienced it, to really “get” it.

  • freedom
    2 years ago

    I hate canceling plans. It seems I do this once a week…As we all know if we commit to an outing we are busily checking the weather, how far will I have to walk, how much noise will there be, what kind of chairs or benches will be there etc. But what people don’t know ( because i am just sitting there) is by the time I say I have to leave is that my invisible symptoms are already in play….numbness, tingling, cognitive issues, fatigue from sitting up straight, pain, pain and more discomfort…and an urgency that I must leave now or a full on pseudo relapse is brewing and I will be in bed for a couple of days. My family members sometimes say …what do you mean that you have to go…your just sitting there.. So tired of explaining. However..on a good not right this minute I feel great!!

  • Devin Garlit moderator author
    2 years ago

    Thank you freedom! I think your thoughts very much echo many of us who battle this disease!

  • 1qjxdme
    2 years ago

    Thank you for expressing what I have been
    unable to put my finger on. I have always been of a “mind over matter” mindset and MS has made me accept the fact that all cannot be conquered with positive thinking. I have recently accepted the fact that no matter how hard I try, I am unable to effectively continue teaching in a public school system. It took me two years to convince myself that I wasn’t just being lazy. Ten years ago, the students laughed when I was trying to encourage them to not give up on themselves and I stated that each morning I wake up and say to myself “I Think I Can”. I now understand that life should not be that hard and if it is, something needs to change.

  • Devin Garlit moderator author
    2 years ago

    Thank you 1qjxdme! It’s true, positive thinking won’t solve all your problems. It won’t make the lesions in your brain or spine go away. That doesn’t mean you aren’t a fighter, that doesn’t mean it’s your fault. I do think it’s important to be positive, but keeping expectations in mind is important. You may not be able to continue your old career in the same way you did, but that doesn’t mean you can do something differently or something completely different. I always feel that having MS means learning to adapt. I know I can’t change everything, but I can beat the disease by adapting to it and doing something else. We can still use though positive thoughts, just redirect them to something else that our bodies can still do! Thanks so much for reading and sharing your thoughts!

  • LuvMyDog
    2 years ago

    Yep, that hit it right on the head. MS fatigue is something that nobody really understands unless they have MS and go through it. It has made such drastic changes in my life. I am so tired from doing nothing. There are days, not many of them anymore, but there will be a day maybe once or twice a week, when I get a reasonable amount of sleep and it helps a little and I can get an hour or two worth of work done in my house. I used to get up in the morning and be able to work 8 or 10 hours straight, cleaning my house, doing the wash, cook, get all caught up. Now, I get up with all good intentions of getting a few things done and by the time I’ve walked to the kitchen, I’m already saying out loud, I am SOOOOO tired! It’s miserable. Everything is one huge effort, even the smallest things.

    Yesterday I went out to do two small errands, go to the pharmacy and to the grocery store for a few items. I had a little something to eat when I got back home and was so totally exhausted after that, I had to go to bed. It’s maddening. I was that person who had tons of energy and would most likely be up 20 hours or more each day, never required much sleep. And then, MS happened. Yes, I truly understand what MS fatigue is.

  • Devin Garlit moderator author
    2 years ago

    Thank you LuvMyDog!

  • teresal
    2 years ago

    Devin, you certainly summarized what for me is the most debilitating symptom of MS. I have explained fatigue as how it feels when you are at the dentist and they place the lead apron on top of you-you feel as if there is a tremendous pressure limiting any movement. I have found that that is an explanation to which many who do not have MS can relate.

    Thank you for a great article – it is so helpful to know we are not alone in our day-to-day efforts.

  • Devin Garlit moderator author
    2 years ago

    Thank you teresal! I think most people consider it their most debilitating symptom! And that’s people who have bad pain, trouble walking, you name it! I love your lead apron analogy, it’s perfect!

  • poetgirrl
    2 years ago

    Devin, thank you so much for this; I think it’s the most helpful thing I’ve ever read about MS fatigue, which is my most difficult symptom. One thing I’d like to know: Do you take medication for fatigue, and if so, does it help? I’ve been taking Provigil (Modafanil) for a while now, and I still suffer from fatigue, although it might be worse if I didn’t take it. I take one pill in the morning, and I used to take another one in the afternoon, but I felt like it caused insomnia. My neuro said it shouldn’t cause insomnia, and maybe she’s right and the insomnia is just another weird MS thing. With MS, I often feel like many things deserve the who knows response. Please keep writing–I think you’re definitely one of the best writers on this site.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much poetgirrl! Like you, I take Provigil (Modafanil). I am prescribed one in the morning and one in the afternoon. I always take the morning one and then if I know I am going try to do something in the evening, I’ll take the second one in the afternoon. I have several times felt like it did nothing for me, weened myself off and then realized that it was actually helping me a lot more then I thought. I feel like it helps me stay more awake and alert but that doesn’t really mean that it makes me feel energized. I’ve stopped expecting it to give me that burst of energy and once I accepted that, I started to realize that it’s still very beneficial to me. I do still wish I had something to energize me though because that’s still a struggle.

    As for insomnia, that is what they say, but I don’t feel that it caused my issue with sleep (really, it’s these for me: https://multiplesclerosis.net/living-with-ms/night-dark-full-terrors/ and https://multiplesclerosis.net/living-with-ms/painsomnia-an-exhausting-problem/). That said, I do notice when I take the afternoon provigil, that the next morning I tend to wake up and stay up earlier in the morning. At least it seems that way. Like you said, there can be so many and varied issues we get that sometimes, you have to say who knows, could or it could be something else! Thanks again for reading and sharing your thoughts, I very much appreciate it!!!

  • 10gm5qj
    2 years ago

    I teared up reading this article, partly because I have been experiencing a lot of these things for a while and I still beat myself up about it like ugh why can’t I just get it together and DO SOMETHING? Why am I so lazy? And partly because not only do I not even recognize it’s my MS and cut myself some slack but, of course, no one else around me really gets it or recognizes it either. :'( I’m glad I read this article today, I needed it.

    One thing I would add is- I am so tired of people telling me to change my diet when I tell them I’m about how tired I am all the time. Yes, a good diet will only benefit me but its not going to cure me of a chronic disease and not going to get rid of my MS fatigue!

  • Devin Garlit moderator author
    2 years ago

    Thank you 10gm5qj, even recognizing that it’s MS, I still beat myself up about it sometimes. It can be hard not too. It’s especially hard when others around us don’t understand. That’s one reason I wrote this, so that it could be shared and hopefully enlighten some people!

    I think many of us are tired of hearing about changing their diet. A good diet is beneficial for everyone, but it won’t cure the disease. I believe in science, and so far, in all the years of people claiming diet is a cure, no study has been able to prove it. It can not only annoying but even hurtful when people keep suggesting it! Thanks so much for reading and sharing your thoughts! I very much appreciate it!

  • itasara
    2 years ago

    I was going to say more but of course I press the button by mistake. I think for me fatigue and motivation or lack of, and laziness are all intertwined and sometimes difficult to separate, but they are separate and different. I don’t have the same amount of critique that the author has. Every now and then I feel like I don’t want to do anything can hardly move and I know that there is fatigue. Other times I know I have to do things but I just put it off or I just don’t feel like doing it and I don’t think it’s truly fatigue. Motivation to do things I don’t know not always fatigue just sometimes who I happen to be. I’ve kind of always been that way. Makes me wonder if I had MS most of my life but then again I had absolutely no way to say that I did. I felt like I was a “normal” person. Got through school, go through college, got married had five children and then my daughter was diagnosed out of the blue with MS which was a total shock to myself and my husband. And then who would’ve guessed years later I woke up with the same symptoms she did and it was a surprise to me. So fatigue is part of it maybe that’s why I was always lackadaisical most of my life but I did get things done that I wanted to get done for the most part.

  • itasara
    2 years ago

    I thought this article was a terrific description of fatigue.

  • eparks
    2 years ago

    Another great article Devin that clarifies things for us! Thanks.

  • Devin Garlit moderator author
    2 years ago

    Thank you itasara! Having motivation can be an issue for many of us as well. Combine that with fatigue and it’s very hard to get things done. I also think that many people, myself included, wonder if they had MS long before they were diagnosed, When I look back, I’m pretty sure I had symptoms that I brushed off and didn’t really think anything about. But knowing what I know now, they most likely were legitimate symptoms! Thank you for reading and sharing your story with us!

  • Devin Garlit moderator author
    2 years ago

    Thank you eparks!

  • shelmus226
    2 years ago

    that not all diagnosis of m/s are the same…if joe has m/s and he gets around a-ok, does not mean, i am not on top of my diagnosis of m/s or i need to get a new doctor or a new therapy choice…..

  • Sandy Richardson
    2 years ago

    MS just keeps stealing more of my life. Today I realized I cannot take care of my finances by myself. I just forget to pay bills and open mail. It is so far beyond fatigue it is exhaustion. I shared this article with family and friends, I hope it helps them understand. Thank you for the well written and accurate article.

  • Devin Garlit moderator author
    2 years ago

    Thank you Sandy. I’m sorry to hear of your difficulties, but I have certainly been there. I have multiple problems when handling my own finances, like you, often because I forget. My wife now ends up handling a lot that because I’ve made so many mistakes. Thank you for reading and sharing, I hope that your friends and family read it and can understand what it’s like for you, even just a little!

  • Dann Higgins
    2 years ago

    Description of MS symptoms begs its’ own vocabulary.
    With fatigue I came up with this analogy; tiredness is to fatigue as sadness is to depression. I am not a professional person, just one of many MS patients trying to be understood.
    I hope it’s clear enough and not inaccurate.

  • Kaye
    2 years ago

    What a great analogy, Dann! I’m going to steal it Monday, when (hopefully) I go back to work. Been so fatigued this week, hard to talk and even breathe. So frustrating to sit at my desk at work & have this heavy fog drop on me. Embarrassing too, when with people who don’t know I’m ill.

  • Devin Garlit moderator author
    2 years ago

    Thank you Dann Higgins, that is a pretty great analogy! I completely agree!

  • Rachel
    2 years ago

    Devin,I read your article some time ago and was unable to leave a comment. Unfortunately now, I dont remember what it was. Ha ha.Yes,quite typical,and typically,yes,the invisible things are the hardest. Time for a relaxing inversion (and coffee!) Gets the blood flowing to my brain. Well, still standing (with Velop d (kind of trendy-looking walker) though no paid work,after diagnosis nearly twenty years ago.My book on yoga for Multiple Sclerosis helps me,thankyou very much for article.

  • Devin Garlit moderator author
    2 years ago

    Thank you Rachel! I constantly forget things like that too. If I am unable to say or do something right when it comes to mind, it’s often lost forever. Thanks so much for reading!

  • Hot and bothered
    2 years ago

    Hi, Devin.

    I just wanted to say thanks for sharing your perspective so articulately. I may find myself forwarding your articles to friends and family (probably not coworkers just yet).

    I think I’ve had trouble even admitting to myself that my MS symptoms are “as real” as the actually are. Just this morning, for example, I tried to fill off my monthly regimen of medicine containers. I had only a couple of final medicines left to complete after filling most of medications into daily dosers Yesterday. I am just about to start my workday, and I feel nearly completely exhausted. As you said, this happens many times each week. The idea of shaving is often too daunting, and I hand up with a month’s of facial growth before I can get myself to shave.

    And I judge myself, maybe even more than other people judge me, for not having been able to get myself to do this basic task. But it’s difficult! Hearing stories from other people like yourself who are coping with similar struggles is really helpful. Again, thanks.

    Best,
    Matt Friedman

  • Devin Garlit moderator author
    2 years ago

    Thanks Matt! I totally understand the shaving bit, I actually have a beard now because of MS, not just being tired but having numb and shaky hands makes it super difficult (not to mention a bit bloody). But it works because my wife prefers the beard.

    Heat sensitivity is such a common and crappy issue for many of us. For me, even the slightest change in temps is rough (https://multiplesclerosis.net/living-with-ms/battle-against-fluctuating-temperatures/). The big thing for me is finding a consistent temp, which seems next to impossible, particularly if I leave the house. A lot of times, winter is actually the worst for me because places crank their heaters, at least in a hot summer, places attempt to keep it cool. I’ve tried a fair number of cooling devices (the cooling vests in the summer are pretty great). I’m also someone that will totally wear shorts and flip flops in the middle of winter. Clothing has become a pretty important thing to me. Thin layers that I can put on or off to try to normalize myself. The biggest thing for me, is to try to be aware of the temp and changes to it. I’ll sometimes not pay enough attention and find that I’ve gotten too warm or cold and I don’t catch it until it too late. For me, being proactive about temperature is the real key!

  • Hot and bothered
    2 years ago

    Also, I’d love to pick your brain about how you and other people deal with extreme heat sensitivity. Personally, even in winter, I need to have wet cloths on myself in order to stay functional. But the fine line I have to walk between being too cold and too warm (and not freezing out my family in the process) is a really tough line to walk. And I don’t even walk anymore! 🙂

  • Karenhorses
    2 years ago

    Dear Devin,
    I’ve tried to explain my fatigue, heat intolerance, and how it changes on a dime to my adult children and other family members until I’ve given up trying. I just shared your message and I believe your words finally got through to them. Thank you so much!!,
    Karen

  • Devin Garlit moderator author
    2 years ago

    Thank you Karenhorses, that’s wonderful news!!!!

  • Carlene
    2 years ago

    Dear Devin,
    Thanks you so very much for this article. It explains MS fatigue perfectly. I was diagnosed in 1991 with Relapsing-Remitting MS. Due to Amazing doctors, my faith, my family and my friends I am doing well. I have passed the article on to my friends and family. A lot of them were shocked to learn of how I feel. Many people minimize MS fatigue by saying, “I get tired too.” I hope this article enlightens those individuals. I try to relate fatigue by using this example, climbing a flight of stairs looks like climbing a mountain to me”.
    It helps people understand.
    Keep the faith and keep fighting the good fight by writing and educating the public.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Carlene! It means so much to me to hear that other who experience fatigue think I’ve done a good job of explaining. It’s such a massive issue for so many of us that I worried about really doing it justice. Thanks so, so much for sharing it too!

  • Debbie
    2 years ago

    Wonderful article!
    I agree 100%. Diagnosed 25 years ago and have never been able to articulate well, this says it ALL.
    Thank you!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Debbie!

  • debbie shaw
    2 years ago

    Devin,

    My husband and I can’t thank you enough for sharing all your articles. I have printed many copies to give out to our family and friends. People unfortunately can’t relate how MS effects our loved ones. Like Karen said you nailed it. My husband has an issue in 1976 when his left side went numb. Doctor suggested possible MS, but Ken got better. In 2013 things started going wrong with him like dropping everything. Now he is wheelchair bound unfortunately. We believe his MS recurred because of chemo and/or radiation he had due to head/neck cancer stage 4 in 2009. I am blessed he survived the cancer because it spread 3 more times. He has all his doctors at the University of Pa. He actually lost his saliva glands due to radiation, so he can’t eat solid food. Then when he was given the new of MS, he was crushed. Our life has changed, but I wouldn’t change not being with him. What upsets me is seems like some friends and family forgot about him. He was an avid golfer at our local country club, but I know the guys feel uncomfortable with Ken having MS. My step son has gone 2 months without seeing Ken many times. It upsets me to no end that he doesn’t visit more or offer to help me. He does call once a week. I have had several talks with him, but I am to the point I don’t want him around. I just can understand how hurtful people can be. If he was my son, I know he would be helping us more. Being a caregiver is very stressful at times seeing our husbands struggle with the tasks we take for granted. I admire everyone with MS, as I don’t think I would handle it as well as many. My heart goes out to you and everyone else suffering from MS. I also want to pass on that our insurance approves pool therapy for 12 visits a month. To see my husband stand and relax in pool is a wonderful thing. I even help the therpist a bit. Prayers and positive thoughts send to you and everyone.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much debbie! Seeing how other respond to us can be be difficult at times. I know MS has wreaked havoc on numerous relationships and friendships of mine. It’s hard but I try to remember that it can be tough on others too (I know that can seem crazy to people like you and me). Not everyone can handle it I guess. I’ll say this, it makes me appreciate the people that do stick around a whole lot more though. Thanks so much for sharing your story, I appreciate it. I always feel it’s very important for those of us to see and remember that we aren’t alone, that there are others like us out there!

  • KarenPainter
    2 years ago

    You nailed it. I wish I could make everyone I know read this.
    Thanks so much!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much Karen!

  • MargaritaMaria
    2 years ago

    Thank you, Devin, for shining some light on our fatigue. I just joined this group after reading it. I am a 63-year old woman who was diagnosed 9 years ago. Many of my friends are slightly younger. I get so incredibly frustrated and even angry when I mention my fatigue and/or brain-fog and they say they “completely understand” because they are going through menopause and it causes the same symptoms. Really?! I was also going through menopause when I was diagnosed. (I also had Hepatitis C which has since been successfully treated but also caused fatigue). Another source of frustration which follows this theme is that, as you mention, cognitive issues and fatigue are invisible. So when people tell me I look great I know they mean well and I take it as a compliment but there is often the assumption that, therefore, I must feel great. My partner of 12 years left me because he believed I was “feigning” illness to get his attention.
    I intend to print your comments so I can share them with family and close friends. In an effort to describe the cognitive fog which visits me all the time I use this analogy: Thinking when I am fogged is like trying to swim through jello.
    With gratitude and appreciation for finding this group.

  • Devin Garlit moderator author
    2 years ago

    Thanks so much for reading and commenting MargaritaMaria! The invisibility of many of our issues can be the hardest part about our disease. It seems no matter how well you know someone, if people can’t actually see something they will always have a bit of skepticism. I actually talk about that a bit more here, if you are interested in reading a little more: https://multiplesclerosis.net/living-with-ms/invisible-illness-pain-not-looking-sick/ Thank you again!

  • dtwhite1
    2 years ago

    Thank-you so much for your article. I had to cancel with a friend who was taking me to breakfast for my birthday. I was too tired to drive 20 minutes to her house. Her car died this morning. I felt guilty cancelling. Its my body that isnt cooperating. What I find frustrating is people expect you to put mind over matter. Well let them try walking around in a 500 pound concrete suit and see how mind over matter works for them! LOL Thanks for your article. Its nice to know someone gets it.

  • Devin Garlit moderator author
    2 years ago

    Thank you dwhite1! I tend to cancel like that very often. I’m hoping this post will help my friends and family understand what it’s like for us just a little bit more. Even if they can’t actually fully “get it”. Appreciate the comment, always nice to hear from other folks who do understand!

  • David Brandes MD
    2 years ago

    Hi Devin and Everyone–
    I just joined the group after reading this post by Devin. I am a neurologist who has specialized in MS for over 40 years. For the past 11 years I have been giving a lecture titled “Fatigue and Sleep Disorders in MS” to MS Healthcare providers (doctors, nurses, NP’s, PA’s and therapists). I do this at the Consortium of MS Centers meeting.
    One of the points that I always make is that fatigue may have many causes, and for many patients it may be more than one cause.
    These are the causes I talk about:
    1. Physical fatigue–impaired physical energy. This can be related to physical exercise, heat sensitivity, infection, side effect of medications or metabolic problems (for example, thyroid disease).
    2. Cognitive fatigue–impaired speed of thinking and trouble remembering things following cognitive work, or associated with physical fatigue. This may also be related to medications of metabolic problems.
    3. Emotional fatigue–this is really another word for depression. People just feel like they “don’t feel like doing things.” They become withdrawn from social contacts. They have no emotional energy. And as noted above, this can also be related to medications or metabolic problems.
    4. Sleepiness–patients often tell me they are “tired” and I need to also ask them if they feel sleepy during their normal waking hours. I also ask them if they tend to fall asleep while sitting quietly, or when reading or watching TV. I also ask them if they fall asleep as a passenger in a car, or even while driving.

    The reason it is important to decide what kind of fatigue you have, is that treatment may require one or more interventions. Very often, the healthcare providers will just think that when you say you are tired or fatigued, they just think it’s the physical fatigue that MS patients often have. They are not thinking about or considering these other possibilities when proposing a treatment plan.
    After reading all the comments about your post, I can see that many patients are aware of these different types of fatigue/tiredness. However, their significant others and/or their healthcare providers may not be aware of the different types of fatigue and how it affects people with MS. And for those patients who haven’t thought about it in detail, they may have more than one type of fatigue and their personal approach to trying to reduce this symptom may not be complete.
    My best wishes to all people with MS.

  • Devin Garlit moderator author
    2 years ago

    And always happy to have further insight provided by someone like yourself!

  • Devin Garlit moderator author
    2 years ago

    Thank you David for reading and commenting!

  • SpacePanda
    2 years ago

    I read this and cried. Mixed tears of joy and sorrow. This article makes me feel like I am not alone. It puts into words what I cannot. I am newly diagnosed and feel like I’m lost. Thank you for this.

  • Devin Garlit moderator author
    2 years ago

    Thanks SpacePanda! I completely understand how you feel. Remember that you aren’t alone and there are plenty of us who have experienced the same things you are. I know I find some comfort knowing others that actually “get it”. Sometimes you can’t truly understand what something is like unless you’ve gone through it. Many times, I’m not really looking for advice, I’m looking for those that really understand. Thanks so much for reading and sharing your thoughts, it’s always appreciated!

  • DonnaFA moderator
    2 years ago

    Hi SpacePanda, we’re so glad that you found us and that this article brought you some emotional cleansing. Please know you’re not alone, we’re here to share information, support or just to listen.

    Two of our awesome contributors wrote articles for newly diagnosed members that you may be interested in reading, please feel free to check out Matt’s article and Cathy’s article. You may also want to check out our Facebook page.

    Thanks for being part of the community! -Warmly, Donna (MultipleSclerosis.net)

  • tfs
    2 years ago

    I made it through the day without an additional nap. This is a miracle. The other day I got up at 6:45 then back in bed for 2 hours. I’m not apologizing – just providing the self care I need for myself. I had lots of stress today, which I got through. It’s interesting this fatigue/depression/foggy thinking. I try to connect every day with people by phone/text/in person. Housekeeping is optional right now — learning learning learning.

  • Devin Garlit moderator author
    2 years ago

    Great to hear tfs! It can be hard to accept that sometimes we need to rest. We all have to remember that taking care of ourselves is our primary job and that’s ok! Thanks so much for sharing!

  • DonnaFA moderator
    2 years ago

    Hi tfs, thanks for being part of the community and sharing the lessons you’re learning with us. -All Best, Donna (MultipleSclerosis.net team)

  • Toddlius
    2 years ago

    It’s very true, what you’ve written. Some days I can just push through the fatigue, but I have to start early in the day. By the afternoon, it’s a real struggle.

  • Devin Garlit moderator author
    2 years ago

    Thank you Toddlius! Afternoons can be really tough for me too!

  • LuvMyDog
    2 years ago

    Excellent post.
    People who do not suffer with this disease and the fatigue can not begin to understand what it’s like.
    I often tell a friend about how I am feeling on a particular day or what I had planned to do but just can’t drum up the energy and I know that she thinks I’m being lazy! I have never been a lazy person! But, if you’ve never had a broken leg or a broken nose or been shot in the butt, there is no way in he// you can begin to understand what any of that pain and trauma might feel like!! It’s impossible!!! The same goes for this ugly disease and all that goes with it!

  • Devin Garlit moderator author
    2 years ago

    Thanks so much LuvMyDog! It’s so true that if you haven’t experienced it, you really can’t know! I do hope this post can help attempt to explain it to others though!

  • agapepilgrim
    2 years ago

    As I read this to my husbandI couldn’t help but cry because he looks at me crazy when I ask him to please hand me the remote when it is within reaching distance if I would just stretch a little bit. I have used the analogy of an 18-wheeler sitting on my chest and can’t get up but I don’t think he believed me until today. Thank you. And it hurts my right arm to text anymore which is really frustrating!!!

  • Devin Garlit moderator author
    2 years ago

    Thank you Reiley! I’m so glad to hear that it made that lightbulb flicker! I hope it’s just the breakthrough your husband needs! Thanks so much for sharing your thoughts!

  • Rieley
    2 years ago

    agape~I read it to my partner, too!! I think I finally saw a light bulb flickering. Usually he’s supportive, but when it comes to fatigue, he does not understand. He’ll reduce me to tears, I’m allowing the stress & anxiety levels to raise, but he’s pushing buttons that he thinks should just be obviously “funny” or a joke~ well, umm… Clearly it ain’t funny to me! My left side feels like solid lead (pb) and I can’t bend the leg to even get in bed… get on the sofa. I’m down to typing one-handed, which is fine since I’m an accountant and I can still fly on a 10-key calculator!! Cognition and concentration kill me, but I love the puzzles forensic accounting presents 😉 yes, I’m weird… Rambling on!!

    Devin~ I loved this article!! Many thanks! I’m taking it to a group (couples) therapy session… =)

  • Devin Garlit moderator author
    2 years ago

    Thank you agapepilgrim! I hope this article helps your husband understand you and what you experience a little bit more!

  • DonnaFA moderator
    2 years ago

    Hi agapepilgrim, we’re so glad that this article helped bring some understanding your way. Please know we’re always here to share information and support. =Warmly, Donna (MultipleSclerosis.net team)

  • Azjackie
    2 years ago

    Bo oh boy your fatigue is right on the money. When I am fatigued I feel like I am walking not only in quicksand but drying concrete. You are so right even drinking water is a struggle.

  • Devin Garlit moderator author
    2 years ago

    Thank you Azjackie! I always appreciate your comments!

  • Carol
    2 years ago

    Your explanation of MS related fatigue is truly the best definition I have ever seen. I have always thought that the MS fatigue is like a “supernatural fatigue”. Not scary, just very, very different from the fatigue I used to experience in my 20’s when I was working and going out at night and not getting a whole lot of sleep.I could just take a little nap and I would be good as new!MS fatigue is like nothing I had ever experienced before. I often think, the medical community needs to come up with a better word than “fatigue”, as MS fatigue is so, so much more than fatigue. Thank you so much for sharing your experiences.

  • Devin Garlit moderator author
    2 years ago

    Thank you Carol, I appreciate that! I 100% agree that they need a better word than “fatigue”! I think that make it much easier to explain to people!

  • Catgirl66
    2 years ago

    What is truly sad is that sometimes the person not understanding MS fatigue is a medical professional. I don’t think I’ll ever forget the day I told an RN I worked with about my fatigue, only for her to tell me to get over it because she hadn’t slept well, also had MS & didn’t want to hear my “whining”.

  • Devin Garlit moderator author
    2 years ago

    Thank you Catgirl66! You are sadly, very right. I’ve had similar experiences to that too!

  • Peacefullflow1$
    2 years ago

    I know I work and by the time I get off My body don’t want to move much less think. I can be some where and be just as lost because of the fatigue. I feel your pain that if you don’t have ms you don’t understand. Try to lower salt intake and sweets it helps alot.

  • Azjackie
    2 years ago

    Hello Peacefullflow1$ great tip on salt and sweets. Thank You!

  • Devin Garlit moderator author
    2 years ago

    Thank you Peacefullflow1$ I very much appreciate you reading and sharing your thoughts!

  • beth0406
    2 years ago

    Thank you so many times over. I started crying reading this. I have tried so many times to explain the difference between being tired and the fatigue I feel to no avail. My fiancé tries to understand but gets so frustrated with me when all I want to do is sleep.

  • Devin Garlit moderator author
    2 years ago

    Thank you beth0406! So sorry to hear you deal with this as well. I hope your fiance can read the post and maybe understand fatigue a little bit more!

  • Kritty
    2 years ago

    Hi Devin, I love reading your posts as they are very descriptive. It’s like reading my own story but I didn’t write it. I feel like they so closely match what I am going through and the way I feel on a daily basis. This post I may print out and give to my supervisors. They are very insensitive – almost disconnected from reality for people who struggle with fatigue and the wide range of how it effects someone with MS. The paragraph you wrote about how fatigue can cause cognitive problems which lead to poor job performance; if you are still fortunate enough have a job. I am one of those who still work but the stress of the job causes brain fog and cognitive issues and mental exhaustion. It’s not that I can’t do my job, it just takes me longer. I’m so glad to have come across the posts you write. They are very informative and it helps a lot to know I’m not alone and know that I’m not crazy that I feel like this.
    Thanks again for the powerful message you are sending out for everyone to share.

  • Devin Garlit moderator author
    2 years ago

    Thank you so much Kritty! I really hope that it can help with your supervisors. I always think that seeing the condition explained by someone else can be extremely helpful when dealing with people we know. Good luck and thanks so much again for reading and taking the time to comment, it is always very appreciated!

  • chalknpens
    2 years ago

    Thanks for posting this. I know, many previously have written and posted about MS fatigue. But it is good to remind us to pay attention to our limits… today I had a wonderful ninety minutes at a Christmas Festival in Boston, but by the end of that time, my legs felt as though they’d gone to sleep, and walking was a bit wobbly… once outside of the overheated hall, the cool outdoor weather helped restore my walking ability, and we made it back to the train to head home.

  • Devin Garlit moderator author
    2 years ago

    Thank you chalknpens! So glad to hear you got out there!

  • messeeone
    2 years ago

    Thanks. After 23 years of dealing with MS fatigue, I thought I’d read, heard, and even said everything on the subject. But some of these things were new (expending 5x the energy of a normal–don’t know if it’s true, but I’ll use it!). And even those things I’m so familiar with (feeling that heavy weight, which to me feels like a wet blanket) were just so good to hear from someone else. Your description about cleaning the kitchen and dishwasher made me tear up a little because this is my life! Just thanks. Sometimes living with MS is such a strange experience, it’s so good to go through it with people who get it.

  • Devin Garlit moderator author
    2 years ago

    Thank you bandmom, it means so much for me to hear that! I was concerned that there have been so many pieces done on fatigue, but I thought I’d give my take anyway, in a way that I thought could be easily shared with people who don’t have MS. Though I’d never wish it on anyone, it is always great to know someone else knows what you are talking about!

  • Laraine
    2 years ago

    Your comments closely describe my own experiences with fatigue.More and more it is not just a physical fatigue, but a mental fatigue as well. My once very capable brain slows down to a point that the most simple math task or organization plan has to be figured over and over again until I’m annoyed and frustrated with myself.

  • Devin Garlit moderator author
    2 years ago

    I completely understand Laraine! That mental fatigue simply isn’t discussed enough, in many ways, it’s the worst part of it. Thank you for reading!

  • Dimitri
    2 years ago

    I think, in my case at least, the worst part of the fatigue is waking up. It can be so painful to wake up with an alarm clock or if someone is telling you to wake up when you’re not ready to wake up. The eye lids are so heavy that it’s a task just to keep your eyes open. And then you have light sensitivity which can make this worse. It usually takes me hours just to wake my brain up.

  • Devin Garlit moderator author
    2 years ago

    Waking is up is very hard for me too. Even once I am out of bed, I need a significant period of time to sit on the couch and finish waking up. If it’s a weekend and my wife wakes up and starts doing things around the house right away, it will actually make it harder for me. I need some peaceful, quiet time to finish waking up or else I struggle the rest of the day. Thanks so much for reading and sharing your thoughts!

  • chalknpens
    2 years ago

    So very true for me, too. My husband is the most patient person on this earth, and never seems impatient or annoyed when he has to come back two or three times to try again to get me to wake up. It seems I lie awake most of the night, fall asleep near dawn, and am sleeping deeply when it is time to get up and begin the day. Boy, am I loving retirement!

  • Shady1388
    2 years ago

    I have not been able to work for a full year and it is mostly due to the fatigue. I applied for ssd and had to go see their doctor. The doctor did not think fatigue is enough of a reason for me to not be working. Has anyone applied and been approved due to fatigue? I have applied again this time with a lawyer. Hopefully it will have a better outcome this time!

  • katake
    2 years ago

    My husband is struggling with this exact situation. He was on short-term disability for cognitive issues and cognitive fatigue, but when it came time to switch to long-term disability, the insurance company didn’t approve him. He was out for the rest of a full year and just went back to work a month and a half ago. Let’s say it’s no improvement over how it was last year!
    The insurance company insists that he needs to show proof of a new relapse to justify his “new” symptoms. Dude! He has MS, fatigue happens! It’s been so frustrating. We might end up in court over it, but that’s tens of thousands of $$$.
    Ech, it’s a nightmare. I sincerely hope your application will be approved!

  • Devin Garlit moderator author
    2 years ago

    Fatigue was one of many issues that put me on disability, probably not considered the primary issue but I am sure that for many people, it is. Good luck on your second go around, I used a lawyer at the recommendation of my neurologist and it was extremely helpful!

  • chalknpens
    2 years ago

    I’m not eligible for disability payments because I have a teacher’s pension after working through thirty years of having but not knowing I had MS… fatigue worsened as the years went on, and I didn’t make 32 years, so my pension is a little smaller than it could have been, but no SSDI for teachers in this state.
    Good luck in pursuing yours … a lawyer will definitely be an asset… if you’re not a state pension recipient.

  • Mascha
    2 years ago

    Thank you for this article. I have this issue since my diagnosis and like you said,when i say i am tired people tend to go straight to their own tiredness and talk straight over me if i want to explain. Functions and where there are lots of people interacting with each other is exhausting. My brain fog is indeed worse. Did not know they were connected.

  • Devin Garlit moderator author
    2 years ago

    Thank you Mascha for reading and sharing your experience too. If there is one symptom I wish and hope I can get people to understand, it’s fatigue!

  • marti
    2 years ago

    I started wrapping Christmas gifts today. I used to be able to run through them all day and get it done quickly. But my fatigue has been getting worse and worse. Today I struggled through 4 gifts and am not totally worn out. I am so dizzy and beat down that I don’t know if I can get thru the rest of the day. Fatigue was one of my first symptoms. Not just fatigue… exhaustion!

  • Devin Garlit moderator author
    2 years ago

    I completely understand marti! The smallest of tasks can be incredibly exhausting!

  • luscombesfly
    2 years ago

    Spot on. My husband had MS. I would only add that your description fits the fatigue felt by polio survivors. I am one of those. The Spoon Theory is a good way to convey the understanding for many of these chronic problems. Chronic pain is another condition that causes fatigue.

  • Devin Garlit moderator author
    2 years ago

    Thank you luscombesfly! I often feel that there are many things I write that absolutely apply to other chronic illnesses. Fatigue is most definitely one them! Thanks so much for reading and sharing your thoughts!

  • lbanks
    2 years ago

    Spot on! I often find my brain sending me messages to give up. I can compare it to the feeling of sprinting until you can sprint any longer. Your brain tells you to stop, give up. The same is true for me with MS. My brain is telling me to give up. Saying, you can’t possible lift that arm. Just give up Lala. I hate that message.

  • Devin Garlit moderator author
    2 years ago

    Thank you lbanks! Keep ignoring that message, as hard as it is! Thanks so much for reading and sharing your thoughts!

  • candi1977
    2 years ago

    That was an awesome summary on how it feels. I am starting to realize that most people will never understand the fatigue that someone with ms has and deals with. It can take a toll on a marriage, when your spouse does not get it.

  • DonnaFA moderator
    2 years ago

    Hi Candi1977, thanks for being part of the community. We’re glad that you found the article helpful. PLease know that you’re not alone and that we’re here to share support when you need us. -All Best, Donna (MultipleSclerosis.net team)

  • Devin Garlit moderator author
    2 years ago

    Thank you candi1977! You are unfortunately very right about the toll it can take. It has certainly affected many relationships and friendships of mine. I hope people sharing articles like this will help raise awareness and hopefully help people understand it better (as much as they can anyway). Thanks for reading!

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