Skip to Accessibility Tools Skip to Content Skip to Footer

Fatigue: A Limiting Factor

Life with Multiple Sclerosis has been an adventure in adapting. Learning to function with symptoms like numbness, weakness, cognitive dysfunction, heat intolerance, and pain hasn’t been easy. While all of those present certain roadblocks that we must learn to get past, there is one symptom whose effects are the most challenging for me to overcome: fatigue. Often misunderstood and dismissed by those who haven’t experienced it, MS-related fatigue is, more often than not, the symptom that most limits the lives of those with Multiple Sclerosis.

Fatigue is not just being tired

My hope is not to rehash what fatigue is here. I’ve covered that numerous other times. If you are reading this and even part of you wants to associate it with simply “being tired”, you should head back and read one of those other articles of mine. Fatigue that comes with Multiple Sclerosis can be debilitating and it can affect every part of your body. It can make the simplest of tasks extremely difficult and like trying to move through mud.

MS fatigue is my toughest symptom

When you stop and consider some of the other symptoms that MS can throw at you, it may seem a little crazy to say that fatigue is the worst. I say this as someone who has had his legs and ability to walk compromised, I’ve had my arms and legs go numb and weak, causing me to drop things and to fall. I’ve had my cognitive abilities become hit or miss, to the point where I wonder if I’m even the same person anymore. I could go on and on about how the various symptoms of MS affect me, but none seem to have the kind of impact that fatigue does on me.

Fatigue can stop me right in my tracks

Put simply, fatigue can stop me right in my tracks (even more so than when I can’t move my legs). I feel like it leaves me in a type of limbo, an in-between place where I’m not dead but I also don’t really feel alive either. It renders me not only unable to move, but, at times, even unable to think clearly (people don’t realize just how much of a whole body experience fatigue can be). No matter what my desires or plans may be, I’m left there, feeling trapped in my own body. When my legs won’t work right, I have options, I can use a cane or a wheelchair. When it comes to fatigue, there really aren’t any options that are 100% effective to me.

It’s limiting

Unless you’ve experienced the kind of extreme fatigue that can come with Multiple Sclerosis, you really can’t understand just how much it can limit you. It can make working nearly impossible. Socializing? Forget it. Even doing the bare minimum that’s required to live becomes extremely challenging. In the past, I have literally been too fatigued to be able to stand up, let alone make myself dinner, so I’ve skipped it. Even when it doesn’t completely stop you, it can limit you just enough to wreak havoc in your life. Maybe I can get up to get myself dinner, but it’s too difficult to make something healthy, so I choose an unhealthy, but much easier choice. Even when fatigue doesn’t stop you in your tracks, it can still force you to take the wrong path.

No escape

I’ve suffered many MS symptoms over my nearly two decades with the disease. Despite mobility issues, extreme pain, bladder issues, and incredible brain fog, I still feel like fatigue has the most effect on my day to day life. To me, it’s the most imprisoning symptom, one where there is no escape. How has fatigue affected you? I’d love to hear other people’s experiences in the comments!

Thanks so much for reading!

Devin

My Other Articles On MultipleSclerosis.netFollow Me On Facebook

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

  • sopht1
    5 months ago

    HI Devin, brilliantly written, can utterly relate. Fatigue is my main symptom, and has completely changed my life from what is was before! Active, sporty bla bla bla , same as so many of us. Yet because it is invisible, and the only time people see me is when i am feeling good enough to get out, they say oh u are doing so well, and dont u manage it well etc! But in order for me to be out doing whatever, for that one or two hours, I have had to rest for two days b4, and then two days after, crazy isnt it! I do have a question, even tho I have been diagnosed, because the only realy symptom I have is fatigue, I wonder if I really have ME, or both, does anyone else have the classic “intolerance to exertion”that is a feature of ME? Because I really do have terrible payback from overdoing anything and I would like to know if anyone else would say this is also a feature of their MS fatigue? Thanku again for such a well put description of this, Sophie xxxx

  • Devin Garlit moderator author
    5 months ago

    Thanks so much @sopht, fatigue is something most people who don’t have the disease simply can’t understand.

  • lingardellis
    7 months ago

    I am from UK, I was diagnosed of (COPD) in 2018 and I have tried all possible means to get cured, i even visited pulmonologist but all to no avail, until i saw a post in a health forum about a herbal doctor from Africa who prepare herbal medicine to cure all kind of diseases including COPD, at first i doubted if it was real but decided to give it a try, when i contacted this herbal doctor via email the clinic sent me the COPD herbal medicine through courier service, when i received this herbal medicine, Dr Hassan gave me step by instructions on how to apply it, when i applied it as instructed i was totally cured of this deadly disease within 15 weeks of usage, if you are suffering of this diseases you can as well Contact this great herbal doctor via his email solutionsherbalclinic gmail com or visit their website at www solutionhealthherbalclinic com

  • StephMS35
    7 months ago

    I totally get what you were saying about what you called being in a “limbo”. Like right now I am in full fatigue relaxing in front of the tv while holding in my urge to use the bathroom. I just do not have an once of energy to get up…so I am holding off.
    The dinner comment I also understood. Just tonight I decided to have left over beef chili instead of making sonething that contained my first vegetable for the day…at 7pm. Sigh. Oh well I cam always eat better tomorrow.

  • Devin Garlit moderator author
    7 months ago

    Thank you @StephMS35, I absolutely know what it’s like to hold off using the bathroom because my body is just too fatigued. Little things like that are what most people don’t really get about fatigue.

  • Mike H
    7 months ago

    Dev,
    I know EXACTLY how you feel & what you’re saying. My symptom of fatigue is also my worst. Walking through mud? Yes, more like syrup or even quicksand. It cripples me most every day. I need a gung-ho push to get myself moving on any given day. If I push too hard I must do what I need to do ASAP then find a seat before I fall. I know we have others out there who feel like us…l look forward to what you write. Keep it up brother…..Mike

  • Devin Garlit moderator author
    7 months ago

    Thanks so much @Mike H! As always, very much appreciated!

  • barbzwires
    7 months ago

    I take Provigil. That combined with a bit of coffee in the morning and I can function. I don’t always function well, and some days it works better than others. Without it, I suspect I would be depressed and just stay in bed. I upped my dose last year for the first time in 8 years (due to an insurance change of my DMT that was bad). I don’t know if there are other meds that do the trick, this one has saved me!

  • Devin Garlit moderator author
    7 months ago

    Thank you @barbzwires! I also find provigil to be very helpful, it doesn’t give me the kind of boost that I think most people expect, but, it is very helpful: https://multiplesclerosis.net/living-with-ms/perking-up-with-provigil/

  • Mike H
    7 months ago

    Hi barb,
    So what did you up your dose to? I was using 100mg daily & didn’t do much at all…

  • barbzwires
    7 months ago

    I was taking 100mg (half a pill) and now take a whole 200mg pill. And my Rx says I can take another mid-day as needed. Sometimes I do take another, but that is rare. (Think Thankgiving, having out of town company for that extra dose)

  • judem
    7 months ago

    Devin, I love all of your articles but this one really hit home today. I have been getting deeper and deeper into a depression because of my fatigue. I feel lost. I feel like no one REALLY understands how it feels to have to say “no” to invites or cancel at the last minute or not have the energy to even talk on the phone. They say they do understand but then at some point down the road a comment just pops out of them that makes it clear that they resent it or misunderstand it in some way. Comments like … “What do you do all day?”, “Everyone is tired in the morning”, “I can’t even get you to come out with me”, “You sleep so much”, and on and on. I have tried very hard to let these comments roll off my back, but now they just make me sad. I don’t want to explain myself anymore and I feel like people don’t want to hear it either. I am getting to the point where it is easier to just isolate myself. But then, I feel like I become the one who has alienated the relationships. So, then I think, should I apologize? I have days (like today) that I just can’t stop crying because I feel so alone. Devin, how do you handle your relationships/friendships/family when the toll that fatigue and other debilitating symptoms takes on you wears them and you down? By the way, I have sent your most relevant articles to them more than once. It just doesn’t sink in. Thanks so much for your thoughtful writing. You have no idea how much comfort they give me.

  • Devin Garlit moderator author
    7 months ago

    Thanks so much @judem, I completely understand. Fatigue is the symptom that I feel is the most depressing. It’s also one that friends, family, and coworkers don’t really understand. It’s part of the disease that has most certainly affected my relationships the most. Sometimes there isn’t much you can do except try to educate them. Don’t ever blame yourself though!

  • judem
    7 months ago

    Thanks Devin. I am working on the guilt and self blaming. It all seems good until someone says something dumb (for lack of a better word) and then it throws me.
    Keep writing … your articles are just what I think we all need.

  • Shelby Comito moderator
    7 months ago

    Hi @judem, my heart aches to hear what you’re going through! The emotional toll MS has on one’s mental health and relationships can be just as difficult to manage as the physical ones – and all the harder when it feels like your own friends don’t understand. I know an online community can only be there for you in so many but please know that there’s always someone here who “gets it” and we’re here for you. I also encourage you to reach out for the support you deserve from in-person options as well, such as medical professionals, counselors, the MS Society’s Peer-to-Peer support (https://www.nationalmssociety.org/Resources-Support/Find-Support/Connect-with-Peers-One-on-One), or the MSAA’s helpline (https://mymsaa.org/msaa-help/helpline-chat). Please do continue to reach out anytime! We’re here for you, Shelby, MultipleSclerosis.net Team Member

  • judem
    7 months ago

    Thank you Shelby. This site is a great help because I have discovered that there seems to only be one support group near me. It is once a month and so far I haven’t been able to make any of them. I am looking forward to it though. I am also going to explore peers one on one. Thanks again!

  • Mike H
    7 months ago

    Hi Jude,
    I know you’ve probably heard this before but i just wanted to say that you are not alone in your feelings. Try not to be so upset. There are many of us out there who support you. Feel free to write back & respond to anyone of us here.
    Mike

  • judem
    7 months ago

    Thank you so much Mike. This gives me a lot of needed comfort.

  • RuthGeller
    7 months ago

    I can detail my MS symptoms and indeed they can be duplicates of yours; and for me also, fatigue is the most debilitating one of all. But four decades of MS have permitted me to look for a way to approach handling what is totally unacceptable because I am in combat with this disabled body and the overwhelming fatigue. So I try to move in an other direction by using the power of my mind, and I imagine I’m sitting next to Stephen Hawking and we are talking; at first sharing the distress we both experience 24/7. Then he changes the subject and we discuss his achievements; and then he asks me what it is (big or small; important or not) that I want to accomplish (as me) going forward. I can’t say that this is a 100% fix, but it helps me. Ruth.

  • Devin Garlit moderator author
    7 months ago

    Thanks so much @ruthgeller, it’s definietly important to find your own way to cope with fatigue, it isn’t easy though. I think living with MS is really about how you handle it in your mind.

  • Rockstarschif
    7 months ago

    Devin- I relate to this more than any post I think I have read. It is impossible to quantify to anyone who has not experienced it. It makes you question everything. Thank you for putting it into words.

  • Devin Garlit moderator author
    7 months ago

    Thanks so much @Rockstarschif !

  • Poll