Fatigue from MS is hard to both explain and understand
The struggles to describe a symptom that sometimes I don't comprehend, either
Everyone’s multiple sclerosis (MS) is unique to them. The different disease types, lesion loads, and lesion locations are a few reasons why our symptoms are so variable. We with MS all live in the same neighborhood, just in different houses.
If there were such a thing as a common symptom, fatigue would be it. Movement problems are reported more often by people with MS, but I’d argue that a few of those cases are because of fatigue. Even if it’s still a relatively common issue with multiple sclerosis, it’s probably the most difficult one for me to describe.
With my kids, it’s pretty easy. Any toy with a drained battery is a good example of fatigue, and there’s one that’s particularly appropriate. They have a robot that moves its arms and legs, dances, and talks. When the battery has no energy remaining, that voice slows, movements are strained, and the weak dancing usually results in a fall.
Adults are often another matter entirely. I’d like to think that people have a grown-up desire to understand something in order to sympathize with it. Sometimes, though, it just feels like I’m having a mystery explained to me, as though I’m the one who needs to be enlightened. I’ll understand it if a kind someone shows me there’s really nothing hiding in my closet.
For friends from my former occupation, the Army, I can explain fatigue by telling them to remember being drained by a grueling event. And for those who experienced it, I can even point to the moments after the electric shock of a taser has “disrupted” their nervous system. For the most part though, there’s just not a great example — no dancing robot for adults.
I should explain that I was tased as part of training, not because I needed to be subdued. It makes for a great comparison to MS fatigue, albeit of a much shorter duration. But understand that I absolutely don’t recommend you spread awareness by using one. No matter how satisfying it might be.
“It’s my multiple sclerosis fatigue.”
“Maybe you’re just tired. I get tired too sometimes.”
“I am tired — exhausted really, but it’s more than that.”
“But you haven’t done anything.”
“Thank you. I know. That’s a very frustrating part of it.”
“A nap is what you need. Your eyes are closing.”
“I’m not sleepy. My eyelids are just too heavy to hold up. It’s like trying to move in Jell-O. Even my thoughts have weight.”
“No, you don’t, but I have a way to help you to.”
“Wait, is that a taser?”
Wanting to be understood — while perhaps not fully understanding it yourself — makes explaining fatigue next to impossible. Not being able to explain the feeling makes it frustrating to the point of tears, but I’m too exhausted for that, too.
I’ll leave you this week with a definition of metal fatigue from the Encyclopaedia Britannica. I ran across this entry by accident while researching fatigue. On the surface, it has nothing to do with MS, but if you experience fatigue, then you’ll know why I decided to include it.
Metal fatigue: weakened condition induced in metal parts of machines, vehicles, or structures by repeated stresses or loadings, ultimately resulting in fracture under a stress much weaker than that necessary to cause fracture in a single application.
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Great analogies, thanks!
Thank you for reading Steve!
Word. Well said.
I describe it as having the flu or pneumonia, except no physical sickness. Prior to (and since!) my dx of MS, I had episodes of not being able to get my head off the bed. One day, the fatigue came and never left. I have it at various levels every day, all severe though.
The thing is, for me, it's okay. MS is ok. It's taught me to focus on the activities and conversations I need and to stay away from those I don't/can't. Spirituality and counseling have inspired my much-quieter life. Also, I am extremely grateful to have the housing, medical, and social support that SSDI et al, provide! Thank you for these articles!
Ah, I forgot the feeling of a feverish stupor. Thanks Diane!
I have so much to be grateful for too. Thanks for reminding me.
Dear Ben, I have lived with MS for most of my life and can identify with your experience almost completely....I concluded a long time ago that most people cannot understand sickness like MS, it is a mystery to them, so I decided to accept their ignorance and ignore their statements completely.....they do not understand and probably never will .....those that do are the gold in our lives, the ones who accept the truth of a diagnosis and then have the courage to be true friends , reaching out in understanding and offering help without smothering us, genuine yokefellows if you will, I understand the tears and grief , agape from a fellow traveller.
Thank you Bariss.
For true friends I find myself wanting them to understand, but not wanting them to at the same time. To truly understand, they'd have to be in the same situation as me and I don’t want that for them.
I used to describe fatigue this way. Get in a waste deep pool of water and start walking, when you get tired - keep walking, when you know your exhausted - keep walking, when you know you can't take another step - keep walking, when you are about to collapse you know what MS is.....and that's just the first part of your morning.
That's a good analogy Rosanne! I think I'm going to use it.
Thank you, sir, for your service and for your input. I was diagnosed in '82 and my neurologist has me at the "secondary progressive" stage. I had to stop driving in 2005 and that really stinks! But I have been married to a retired Physical Therapist for 45 years and life is great! My best wishes for you and your family. I can be reached at [email protected] Also, I was in the Naval reserves. Darrell
Thanks Darrell and thanks for your service too. I'll have to write about driving someday, because I really miss it. I think for me it was a feeling of lost independence.
I use a tired vs weak explanation . Since my legs and core are primarily affected I explain that my body, especially legs don’t want to hold me up
Thanks for a great article!
You're so welcome Karen!
I have had MS for 22 years now. In my earlier years with MS I described my fatigue along the lines of your metal fatigue analysis. Describing it as it you took a coat hanger and bent the the top of the hanger repeatedly back and forth, the metal heated and eventually broke due to fatigue. Now some 20+ years later with SPMS my fatigue is much greater and takes me down every day. The best way to describe my fatigue to others now is referencing that one runner you see at the end of marathon on their hands and knees crawling the last hundred yards to the finish line. I tell others, that is me everyday.
Nice analogy Dix!
I think that this is good work Ben, thank you. It can be difficult to convey and the often-made comment - you need a rest (& that will 'fix it'), especially when you are fatigued, can test you a bit. I like the use of Jell-O (treacle is the example I use). It is frustrating and does impact physically and mentally.
Thanks for the comment Brendan and for the treacle analogy. That's twice on the comments for this column alone. It must be a good example for MS fatigue lol.
Great explanation which I read while in my “charging position” (reclining with legs elevated above hips) after a few hours of strenuous (for me some days) sitting. I never would have believed sitting would be a challenge. Good analogies. Thanks.
Hi Linda! My wheelchair tilts and can raise my feet, so I am very familiar with the charging position. LOL
Really enjoyed this article about FATIGUE. It is definitely my top symptom. Battery analogy is spot on and I use it often.
Thanks for reading Patrick and for compliment. Rundown batteries is as close as I've gotten to a universally understood analogy. It's not perfect, but it's close.
Wonderful article, as I have Secondary Progressive MS, diagnosed in 2012. Trying to explain symptoms is truly difficult, not being able to think of a great way to give an analogy as you did! Keep keeping on.
Thank you Kelly! I'm working on my analogies. What works for one doesn't always work for another. One day we'll find the perfect universal one.
Thank you for this article!! While we may not be able to explain it to people-or even ourselves, I appreciate what you've done to try.
Thanks Teresa! I'll keep trying my best to better understand it myself so I can better explain it.
Thank you for this great article, generating some thoughtful comments. I have had RRMS for 24 years, and I feel old and tired just writing that! I describe my fatigue as like wading through treacle with lead boots on. There are lots of tips on how to deal with fatigue, but I have yet to find one that actually works. Still, I'm forever hopeful and won't give in to this disease. Good luck to you sir, and to all those who have shared their story here.
Thanks for the comment Catherine! Wading through treacle. That's a good analogy! I know someone who describes it as tripping through treacle. https://trippingthroughtreacle.com/