The Fatigue Deluge

I know there is no shortage of articles online talking about Multiple Sclerosis (MS) and fatigue, in fact, I know I have written about it here at least once. So why am I writing about it again? Well, the fact that there are so many people blogging about MS and fatigue should tell you just how common this symptom is in MS and how much of a central role it plays in the lives of all the people living with this disease. According to the National Multiple Sclerosis Society, fatigue is one of the most common symptoms of MS “occurring in about 80% of people.” What’s important to understand is that among that 80% of people, the severity of their fatigue ranges drastically; how fatigue affects one person with MS is not the same as how it affects another. At the same time, how fatigue affects one person at one point in time can be very different than how it affects them at another point in time. Like most MS symptoms, fatigue is very dynamic, by which I mean its severity always seems to be changing, and so how I see its effects on me is almost always changing as well.

The subjective measurement of fatigue

Of course, how do you even objectively measure fatigue to know that it is actually changing? Like any other MS symptom, the severity of your fatigue is mostly subjective. Think about pain; a papercut to a 5-year-old is probably the most painful thing they have ever experienced in their life, but a papercut to an adult? Yeah, sure, it might really suck but… life goes on right? Just get a Band-Aid and maybe don’t cut any lemons for the rest of the day. We measure the pain of that papercut subjectively, and fatigue is no different. I know there are scales out there that attempt to measure things like fatigue objectively, but all they are really doing is recording the severity of someone’s fatigue according to how they describe it, which means it’s ultimately still subjective. If we were asked to rate our fatigue on a scale of 1-10, a 6 to you might be a 3 to me, or vice versa.

My own subjective scale

Having said that, it should be much easier to understand my next point: I can say with complete certainty that my fatigue today is much worse than it was just three years ago. You see, fatigue has been with me since the start of my journey with MS, but the severity of it has very much changed along the way. When I think back on the fatigue I had when I was first diagnosed with MS and then the fatigue I have now? It’s laughable! Laughable because on my own subjective scale of fatigue, I can tell you that what I thought was terrible then would be amazing now, as in, I WISH I had that much energy! What I used to think was a 9, I now feel is a 2. Basically, when I first started dealing with fatigue, I was like that 5-year-old dealing with a papercut; I thought it was the end of the world but now? Ha!

Crippling fatigue

So over the years, my fatigue has without a doubt got much worse (except for the two years that I was on Tysabri which did wonders for me) and now? It’s terrible! It’s definitely my most debilitating MS symptom! I look at everything I have to live with on a daily basis such as how I can’t see straight because of my oscillopsia/nystagmus (which are so severe that I haven’t driven since February of 2015), how my balance is so bad that I now walk with a really wide gait (which has caused me many knee problems), how I can’t tilt my head in certain positions because doing so induces an extreme bout of vertigo, and how there are just so many other symptoms that weigh me down in life. I think about all those things and how my life would be so much better if they all just disappear, but then I think about my fatigue and how I would be able to do even more if I could make THAT go away! I would be able to get so much more done, do so many of the things I used to love and enjoy doing that I now never have the energy for, and almost certainly be able to deal with my other symptoms better. My vertigo would surely still suck but not as much as trying to cope with vertigo on top of a crippling fatigue sucks, you know?

Drowning in the deluge

So for the last three years or so, I have felt like I have finally started drowning in the deluge of fatigue I had before always managed to mostly stay on top of, but now? Everything that helped me in the past has seemed to have lost its kick. I mean, they still help, but not as much as they used to. Fatigue weighs me down like a wet blanket has been draped over my entire body while I am trying to move around the house and get stuff done, and that blanket is always there getting heavier and heavier as time goes on. When I wake up in the morning, even after a good night’s sleep, getting out of bed is often really difficult because first I have to build up the energy and willpower to not let that “wet blanket” weigh me down while I try to get up.

Sometimes trying to overpower the weight of this blanket feels like when you are working out and lifting a heavy dumbbell; you are trying to get in one more rep than you usually do and you have almost lifted the weight all the way but… your arm stops halfway, you feel it shaking, and then, despite how hard you are trying, it slowly begins to fall back to your side. My current fatigue makes me feel this way about most the things I try to do every day; I can almost do it but… nope, I need to lie down. I guess I didn’t quite have the energy I thought I did…

All I have is a glass of water

So my methods of overcoming fatigue (such as medication) used to act like someone spotting me at the gym who could help me finish that last rep. They are now like some dude who is just sitting on a bench in the far corner telling me, “you can do it” when no… I can’t… I need someone to spot me! To use an analogy I have used many times in the past, if fatigue was a fire, then the fire I had to deal with in the past was small enough that a single bucket of water (representing my past methods of fighting fatigue) could momentarily put it out. But now, the fire that is my fatigue has turned into a roaring forest fire, and I don’t even have a bucket of water anymore, all I have is a glass of water. That glass of water might put out the flame of a candle, but it isn’t going to do anything to make my forest fire of fatigue pause for even a second.

As of now, with the tools I have, I feel like I can get about 2-3 hours of moderate “work” done, and then I feel so wiped out that I don’t even want to do anything that I would consider relaxing and enjoyable. “Man, I am done for the day, maybe I’ll pop in a movie? Hmm… the DVD I want is way over there, and even if I had it in my hand right now, I would have to get up, walk to the DVD player, turn it on, put the DVD in, change the TV input, find the other remote for the DVD player since there are no navigation buttons on the actual DVD player, then adjust the volume accordingly and… you know what? Screw it, Netflix on my tablet… wait… ‘internet connection lost’? Oh forget it, I’ll just lie down and stare at the ceiling because that’swhat I have the energy to do.” This level of fatigue is incredibly depressing, and what does depression cause? Say it with me, fatigue. What a cycle…

Right now I just feel stuck

I’m currently trying to figure out a new tactic to fight my fatigue so I can try to break this cycle and actually function. Actually get stuff done and move forward in life at however small of an increment I can. Right now I just feel stuck in life, which is also really depressing. I have talked to so many people about what helps them, and I have read so many suggestions, tips, and advice online. I have tried many of these things to no avail, but there are still a few things that I haven’t yet tried but plan to. Hopefully, I will be able to “get back up on my feet” after this, but in the meantime, while I am outlining my next battle plan, I am always open to suggestions. Maybe the one thing that would change my life is something I still haven’t tried or even read about. I know fatigue will almost certainly always be part of my life, but my goal is to make it a smaller part.

What advice do you have for the many people living with MS that also have to struggle with the intense level of fatigue that this disease so often brings about? Share your thoughts, experiences, tips, advice, and opinions below!

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 (15)
  • Whatevermom
    5 months ago

    It is so difficult to exist among people who don’t have MS and can’t understand (no fault of their own) the incredibly awful symptoms of this disease. It’s so hard to continually put up a strong front and some days nearly impossible. My fatigue too had gotten worse but certainly not as bad as the fatigue you described. I am managing the mornings on a 200mg modafinal but I might as well be taking a placebo in the afternoon-nothing helps.
    Thanks for sharing

  • Matt Allen G author
    5 months ago

    It really is, I have come to the conclusion that no matter how hard someone may try to understand they will never fully “get it” unless they experience it.

  • ShelbyComito moderator
    5 months ago

    I can imagine that must be so frustrating, @whatevermom. I’m so sorry you are feeling isolated on top of experiencing increased fatigue and all of the other challenging symptoms MS has to offer. Please know that you are not alone and there’s no pressure to put on a strong front here if you don’t want to. One of our advocates has an article on her experience with feeling isolated that you might find helpful if you haven’t already read it: https://multiplesclerosis.net/living-with-ms/you-are-not-alone/ We are so grateful to have you in our community. Thank you for sharing! – Shelby, MultipleSclerosis.net Team Member

  • dtwhite1
    5 months ago

    Hi, you really explain well how fatigue affects you, like the wet blanket weighing you down. I used to say I was walking with concrete bricks on my legs. I’m not sure what you can do to lessen the fatigue but I have had that balance and wide gait problem. I was willing to do anything so I went to a chiropractor (who had graduated from Palmer Chiro College) and it probably took about 6 months and one day I walked to my car (which was only about 300 feet) from the chiropractors office and realized it was the first time in 5 years that I didn’t have to concentrate on each and every step of walking. Not having that wide gait may also help with fatigue. All of the concentration just to walk and get basics done can be exhausting. (just taking a shower and getting dressed) I can relate when you say the dvd is too far away or the wifi isn’t working. Some days can be overwhelming. I am sorry that it’s becoming so many days that are overwhelming you.

  • Matt Allen G author
    5 months ago

    Ahh you got it, the energy it takes to just THINK about doing something, that has to be one of the top contributors for me.

  • Bkboo
    5 months ago

    Fatigue is an awful symptom to deal with not only can it be debilitating but it has changed who I am. MS Fatigue …I have to accept that “the new me” needs rest after 3 or 4 hours. I will crash and the only thing that sounds good to me is to push the remote and just watch TV! I use to train in Martial Arts, danced and taught Aerobics! I had tons of energy, but now I have to listen to me body or my body just gives out….my walking slows down, brain slows, etc. MS fatigue has become a part of who I am. BUT when my energy is good I take advantage to workout and do all I can…I am trying to accept the “new me”

  • Matt Allen G author
    5 months ago

    yep, that’s my motto around the house, “I do WHAT I can WHEN I can”, because it’s all about energy conservation. If I do too much I’ll either fall apart or pay for it the next day OR BOTH.

  • ScottishAncestry
    6 months ago

    Dear Matt, I, too experience severe fatigue. It was my first symptom, and has gotten worse over the years( diagnosed in 1993). I spend almost all day in bed, not always asleep, but much of the time. What I need to know is does anyone else have this problem? My house is a mess, my husband does all his own cooking. I feel worthless. My neurologist doesn’t seem to understand, either. Please, if there’s anybody out there who experiences this level of fatigue, please let me know. I feel like I’m a freak.

  • Matt Allen G author
    5 months ago

    This is definitely common in the MS community and I can relate, it’s depressing. I wish I had ANY sort of answer, just know you are not alone

  • LeeAnn
    6 months ago

    I have found that if you just listen to your body and do what it tells you to do you can get past it. Rest is the key and yes it might seem like you’re giving in to the MS but in reality you’re taking care of your body. They say to avoid stress and that’s not that easy to do. Stress will always be there no matter what. I just get rid of whatever it is that’s causing it and no it’s not always easy to do.Right now I’m dealing with extreme fatigue and all I can do is really nothing except go with it. I know it will get better. Make sure you get your blood work done for vitamin levels. I have to take vit D and B12 and I have a feeling there might be other levels that need to be checked. I was told once that there has to be a reason to have all the vitamin levels checked excuse me isn’t having MS reason enough. I don’t know if this has helped you any or not but it felt good to help in any way I can. Good luck to you.

  • Matt Allen G author
    5 months ago

    Yes, I definitely have had my levels checked. I was low on D3 but B12 was great as I was already taking supplements. So far tweaking my D doesn’t SEEM to be helping but maybe I would feel worse if I wasn’t on it? Who knows.

  • Carin Kline
    6 months ago

    Wow….I totally get it. I am in that funk right now. I always try to find ways to laugh it off, but it doesn’t really do anything besides lift the tension and bad feelings for my husband and son. The whole “Oh forget it, I’ll just lie down and stare at the ceiling because that’s what I have the energy to do.” is the story of my life. I work from home so my schedule usually looks like: wake up (getting out of bed can take anywhere from 15-20 min), sit at the computer for 3 hours, take a 3 hour nap, work for a few more hours, sit in my lazy boy and stare at (not even watch) whatever my husband turns on, and go to bed. I can forget about half the day if I have to shower. Provigil/Modafinil don’t work anymore (now it usually just makes me feel worse), and if I have one more person try and tell me to eat this or take that supplement, or “you will feel better if you exercise more” I think I’m going to scream. I can’t shower without a significant rest – how do you think I’m going to “exercise”? LOL It feels so good to hear there are others out there that envy the energy they had in the beginning when they thought they felt sapped, and that I’m not the only one where things have seemed to have stopped working. Please keep me updated if you figure out a way to bottle someone’s energy. My son has a TON to spare and has said he is willing to donate. 😉 Make it a great day with what you have!!!

  • Matt Allen G author
    5 months ago

    It’s hard, so much of MS is a catch 22 because when I CAN exercise I do feel better but it never lasts. I always end up losing the energy to keep up a routine and then starting it back up feels impossible so I get it. And I should be clear, when I say it makes me feel better I don’t mean it clears up my fatigue and give me energy. I mean I mostly just feel better about myself and less guilty about needing to rest.

  • poetgirrl
    6 months ago

    Hi, Matt, thanks for writing about this subject. Fatigue has always been my most debilitating MS symptom, that is if you don’t count my balance problems, which have caused some serious injuries over the years. Unfortunately, I don’t have any advice; like you, I just have questions. My RRMS has now become Secondary Progressive MS, and I also think my fatigue has worsened. I have taken Provagil for a few years; I’m not sure it helps all that much, but perhaps I would feel worse without it. I tried Ritalin, but it made me too jittery. I gather that medications are no longer giving you much relief, but I’m curious about what medications you’ve tried, and if any worked better than others. I’m no longer taking a DMD, except for a large daily dose of Biotin, which seems to be the only thing that has been shown to have efficacy for SPMS. I noticed that you mentioned taking Tysabri with some success, but it’s not c;ear that it benefits SPMS and it carries an increased risk of breast cancer in women. I guess we’re all just trying to figure out if there’s anything we can do to feel better and more actively participate in life. Please know that your writing helps readers like me feel less alone.

  • Matt Allen G author
    5 months ago

    Hi, as far as DMTs? Copaxone, Rebif, Tysabri, Aubagio, Lemtrada, Zinbryta, and now Ocrevus. For fatigue? Pretty much just Modafinil. Ritalin, and Armodafinil but nothing totally works for me.

  • Poll