Some Things I Wish People Knew About MS-Related Fatigue
Last updated: March 2023
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 Multiple Sclerosis Society estimates that fatigue affects at least 75% of those with MS.1
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 fatigue is not just being tired
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.
Fatigue makes simple tasks feel impossible
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.
Expending all our energy
A common meme on the internet proclaims that people with multiple sclerosis expend 5 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, then you’ve no doubt heard about the Spoon Theory, another great description of what it’s like to live with MS that speaks specifically about fatigue.
No amount of sleep or rest helps
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.
Fatigue is unpredictable
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.
An invisible symptom
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 than 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.
Difficulty making it through a workday
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 is a big culprit when it comes to people with MS having to leave work.1
It's absolutely demoralizing
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 go 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
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: