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Describing fatigue to others

A cartoon of a lady with a 10Kg weight around her leg What is it like to have fatigue (it is really awful) and how can we explain fatigue to others who have never experienced it? (almost impossible)

Fatigue is a common symptom in MS but seems to be invisible to most other people. This can seem incredible to the person who is experiencing fatigue as they may be leaning against the wall or holding onto their shopping trolley or the arms of their chair as if their life depended on it.

Would it be useful to be able to explain fatigue to other people so that they understood more about the difficulties and how much fatigue can vary from day to day or from morning to afternoon? Well, yes it would, but is this possible if they’ve never experienced fatigue themselves?

Perhaps the best place to start is to tell people what it isn’t. Fatigue is not sleepy tiredness. It won’t be sorted out by having a good night’s sleep or a kip in the afternoon. Of course, somebody can be sleepy tired as well as fatigued. For example, if they’ve had trouble sleeping due to pain or spasms, then a good sleep will help that side of things but not really their fatigue.

Fatigue is worse for some people than others. It can vary from one day to the next so predicting what you can do is really hard. Bad fatigue for one person might be really struggling at work. For someone else, it could be barely being able to cross the road for a pint of milk (despite being at home resting all day). For another person, it might be getting from the bed to the toilet only by clinging on to furniture and door frames. Fatigue is a big deal.

But this just says what it is hard to do when you have fatigue. What does it actually feel like?

Not everyone experiences fatigue the same way. In our book Living with Fatigue, people with MS describe their own experiences. Here are a few:

“As a physical sensation it reminds me of falling into quicksand/a swamp – it’s a viscous, heavy, pulling feeling, but if I try to fight it, it hurts like hell and robs me of breath. As a sound, it’s like a muted background noise of violins, scratching away, that seem to be ever increasing in speed and out of sync – while the outside world seems dampened and fading”

“Fatigue feels like being weighed down, as if you are trying to walk up to your neck in a deep, muddy river in heavy, wet clothes carrying shopping bags full of rocks”

“Fatigue feels as if I am an inflatable, and someone has pulled the airstopper out! My brain goes fuzzy and I can’t think clearly, my speech slurs, my eyesight goes and my eyes start to close – I think the room is full of smoke! Swallowing becomes more difficult, my balance gets worse, my legs feel heavy and clumsy”

These are great descriptions and should help someone who has never had fatigue have a better understanding of what it’s like.

Another way is to try and relate the feelings of fatigue to experiences that most people have had before. That way they should access their own memories and, hopefully, feel again the heaviness or disorientation or other unwelcome sensations so that they feel it rather than imagine it in a rather theoretical sort of way.

You could try this:

Firstly, ask them to remember the worst hangover they’ve ever had. Get them to think about what the circumstances were, exactly how they felt when they tried to get out of bed, how they staggered downstairs and how rough they felt for the rest of the day. Ask them to relive the memory strongly for a moment and then file it for later.

Then ask them to think about the worst jet lag they’ve ever had. How exhausted and disorientated were they? Did they feel almost sick? Did they feel really tired but couldn’t sleep at the right time of day? Ask them to bring this experience strongly to mind and then store that memory for a moment.

Now ask them to recall the worst flu they’ve ever had. How awful they felt all over their body, how getting out of bed was a struggle or almost impossible, how every little thing made them feel worse.

The next step is to get them to imagine what it might be like to have all three (a hangover, jet lag and flu) at the same time, to recall both the physical and the mental feelings. Horrendous! How bad would that be?Living with Fatigue - Fatigue management for people with MS

Now ramp it up and ask them to imagine that everything is ten times worse than they just imagined. It could be almost like going unconscious – a bit like fainting but without the woozy- sick sort of feeling. This is becoming unimaginable for anyone who has not been there but hopefully it makes the point about how bad fatigue can be. The frequently heard comment that “everyone gets tired sometimes” is way off the mark.

Although fatigue is very common in MS, it is possible to decrease fatigue and free up some energy. Fatigue management involves pacing yourself and using what energy you have for the most important things. It may involve asking others to help out or just accepting that not everything will get done. You can read more in Living with Fatigue which is available as a book, to read online or download as a pdf file.

Would you like to tell us how you feel when you are fatigued? Have you found a good way to explain it to other people? Let us know.

Jane, Information Officer

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25 Responses to “Describing fatigue to others”

  1. Amanda says:

    Fatigue is plaguing me today it completely takes over you and feels awful.
    I have spent today trying to get going and even dropping something is a major stress as I know I can’t move to pick it up. I faced a sink full of washing up , a few dirty dishes I hear you say but it may as well been Mount Everest to climb the way I feel now, I have not the energy to wash or bathe and guilty feelings don’t help trying to be upbeat for my 14 year old daughter just arriving home from school.I am worrying about dinner will I be able to cook? I have a hospital appointment at 10 in the morning and an am worried I may not make it, fatigue a major disability.

  2. Loribelle says:

    This is a very good article, and a start in how to explain fatigue. I feel no one gets it, really, you can say you are tired but it truly is crippling and no one understands. I get a lot of you are retired? You don’t work? You are home all day??? Please, what if I said I changed the sheets, went to the grocery, made dinner, and emptied the dishwasher and that was it, can’t get out of the chair, don’t have enough energy to go get the mail, am going to bed at six because I am so tired I can’t sleep, and then lay wake half the night due to numbness and tingling. Vicious, vicious cycle…..please let me get some energy. Please.

  3. Ulla Marie says:

    Fatigue feels like hitting a cushion and walking through a heavy quilt trying to keep up with the pace of other pedestrians in the street. feels like the people walking behind you are very impatient and try to push you forward. It´s like some heavy force is trying to pull your legs down through the pavement.

  4. Erika says:

    I also have MS but i have never had this fatique,i feel for all you who has this. I hope you did manage your day ,have a nice Day :)

  5. Christie says:

    Fatigue. When a triple latte just doesn’t cut it. Great write up, thanks for posting.

  6. Lisa Salvino Dearey says:

    As a former long-distance runner, I explain to people that MS Fatigue is like hitting “The Wall” at the 20-mile mark while running a marathon, except you can NOT work through the MS Fatigue like you can The Wall.

  7. Tina says:

    I used to run anything upto 10 miles a day and now I can’t manage 1 mile. My legs just feel so heavy and tired. Like they have no power in them.

  8. Les Edmunds says:

    It is very difficult to get over to any non msers the feeing of fatigue. It’s not just the legs but also the trunk of the body which needs to be strong enough to hold the body upright rather than sagging to a stoop. I usually say it’s like walking in a suit of armour

  9. Sally says:

    My fatigue is comes with a fogginess in my head which makes it hard to think clearly, cognitive fog or cog fog is the best descriptive phrase for it.

  10. nigel says:

    I was diagnosed with progressive m.s in 2006 but I had been having problems for years before.
    from the start fatigue, was and still is my primary problem, I am wheelchair bound now but when I was still able to walk, you could not go anywhere as without warning my legs would go like lead, and be staggering all over the place, with people thinking I was drunk, but the truth was energy levels would go like just turning off a light switch, and I simply lacked the energy or strength, to even lift my legs up, I would fall in work and not be able to get back up, fall asleep at the drop of a hat, it was and is a nightmare all these years on and it is still impossible to know when or how it is going to effect me.
    the fatigue is the main symptom that wrecked my life, my job (which I did for 23 years and loved).
    my social life everything just went, as I just do not have the energy, or strength for anything anymore my electric wheel chair is a real help, but the fatigue is still is a big issue.

  11. G Junginger says:

    Fatigue can hit you unexpectedly and you feel then like having concrete block attached to your feet. Many MS patient suffer, but there are some who never experience it (the lucky ones). Found that over the many years I had MS, fatigue has become one of the ugliest symptoms which is very difficult to describe to others.

  12. liz says:

    to me fatigue feels like I am experiencing some kind of outter body feeling, a light headed yet fuzzy feeling, which believe me is not very pleasant. My concentration level is quite non-existent, sometimes I have difficulty in getting my words out, or even have a delayed response. I feel exhausted yet cannot appear to have a restful sleep. My mouth is dry, my eyes ache along with my joints, my mind wonders – to where I do not know, just wonders.

  13. Simon says:

    Only got diagnosed with MS in Feb, but it sort of answers all the problems over the last 15years.
    The fatigue is the worst part, totally draining, feels like like walking up a never ending hill with concrete shoes carrying two huge weights in your hands,cant sleep and any attempt at a structured thought process is gone. Causing me real problems at work, I am just waiting for the tap on the shoulder and be told to get out and dont come back, pleasures of an understanding employer!

  14. Shay says:

    Appreciation to myy father who told me cohcerning
    this blog, this blog is actually awesome.

  15. tracey says:

    I was diagnosed 2 years ago after an inconclusive test 20 years ago I suffer with spasticity in my legs pain in the left side causing my fingers to curl, the fatigue is on and off untill the last to weeks I can’t funtion at all
    and the frustration is driving me mad. The hardest part for me is that I look ok and people just think I’m drunk or hurt my back!!!

  16. Christin says:

    What an amazing article. I Googled “heavy legs ms” and found this article as I am lying in bed from the fatigue I feel today. I didn’t have the energy to take my daughter to school today so we both are home.
    I’m a single parent as well and what \i have learned most is to be very honest with my body and the way I take care of it.
    When the weather changes I just feel horrible, yet instead of fighting it I’m learning to roll with it better……………with less guilt. That’s the killer there is the guilt.
    Thanks everyone!

  17. sarah dixon says:

    I am so pleased, not that you are all experiencing fatigue but that I am not alone. MS is a sneaky cheeky spoiler! However I am in high spirits and trying to look after myself. Was ‘diagnosed’ 30 years ago nobody mentioned fatigue…..well its invisible and the only qualification we have is the experience….

  18. Boo says:

    My God this fatigue malarkey is a bloomin killer. It is exactly how Jane described it. I am not physically tired but can barely put one foot in front of the other and this has been going on for months. Every little chore is a major deal. I do wish there was a miracle cure!!! Doesn’t help when your husband says get over it!!! Grrrrrr.

  19. Simon says:

    Great Article, I got diagnosed 2 years ago although with the amount of damage shown on the scans they Doc’s estimate 10 years!!.
    I am sat at work today struggling to see my computer screen and hoping to God that no one needs me to do anything in a hurry, I can cope with the walking problems, the problems picking things up but the fatigue is best described as being dead but your heart is still beating and the brain still working!!

  20. karrie says:

    This is how I have explained “MS Fatigue”
    I have been tired; I can run a marathon tired. MS Lassitude…You feel like you have weights attached to all your limbs. Everything you pickup is heavy…including a hair brush. Chewing food is a chore. Lifting your arms and legs is painful, using them is futile. You want to do things; to shake it off, you can’t shake it off and you can’t do things, the more you try the more exhausted you become. Your mind is numb your eyes blurry. Your speech is slurred and you cant remember words for every day items like “toothpaste”. Think through the fog, think through the fog. Your nerves on edge; its agitating you, you would run; save for the fact that me, myself and I are only going to follow and who cares anyway…you have no gumption. A life sucking force robbed you of all your strength leaving you overwhelmed with depression.You are confused and want to cry but you cant. Weak and exhausted you lay in bed thinking about Rumplestitskin and wondering if he was really sleeping or if he had MS too.

  21. Steph says:

    I sometimes think it feels like one of those nightmares where you’re being chased but you’re frozen to the spot and just can’t run however hrd you try, it’s like moving at snail’s pace when you are exhausting yourself trying to sprint

  22. Anne-Marie says:

    I think that the biggest problem is in the word itself.
    The word “fatigue” simply does not cut it. It just does not. To call MS fatigue “fatigue” is a big disservice to people living with this debilitating MS symptom.

    Many “Sheer EXHAUSTION would come closer?

    Any other words come to mind instead of the word fatigue?

    I am also pleading/begging that the word “fatigue” be abolished from all MS litterature and replaced by an accurate word/term that might describe that symptom to non MS’ers.

    Using the word fatigue in MS litterature would be like using the word far sighted in litterature for the blind…

    Really?! Let’s use a word as strong as the symptom shall we! Please!

  23. caroline court says:

    Reading all the reports on the inappropriately titled ‘fatigue’; I ditto everything said. I would like to ask…do any of you feel ‘ill’? That may seem a ridiculous question but when my fatigue hits, it comes from nowhere and I feel as if I will pass out. I feel drained, weak and nauseous. I feel as if the life in me is being sucked out of me.It always frightened me; after 20 years of it. I would rather have all the other symptoms at once. Does anyone compute with this?

  24. Sarah clare says:

    My exhaustion gets really bad when I have a meal.could almost pass out.diagnosed 10 years ago

  25. Terri rock says:

    I’ve never heard someone explain my life before. I know that fatigue is part of my MS. I was diagnosed in 1996 And I’ve been through a lot of scientific breakthroughs, however nothing explained, treated, or identified the way I felt. My husband is a sweet man But sometimes truly doesn’t understand how I’m feeling. All he has for reference is how he might be feeling and that’s the way most people without MS try to identify with what you’re telling them. I’m going to Use this blog as a reference to anyone who really cares to know about what I’m going through. If they don’t use It, I won’t be angry because most people just don’t understand. However if they do choose to find out the truth about MS it would be a blessing for all of us. Thank you for this blog

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