Multiple Sclerosis Fatigue: Puzzling over the Jigsaw

Multiple Sclerosis Fatigue: Puzzling over the Jigsaw

MS Wire column

Feeling tired?  No surprise there.  Fatigue is as much a part of living with Multiple Sclerosis as sand is a part of the beach where I live.

It’s interesting, then, that neurologists seem to have no good system for measuring levels of MS fatigue or any treatments that are really effective over the long term.

Physiologists at Colorado State University are raising those issues in a paper titled “Fatigue in Multiple Sclerosis: Misconceptions and Future Research Directions,” published in the Aug. 2 issue of Frontiers in Neurology.  In it, they assert that “fatigue remains poorly understood and [because of that people with MS] continue to suffer from a lack of effective fatigue treatments.”

The paper points to research by B.M. Kluger and others, and puts it this way: “Current treatments are nonspecifically targeted to a vaguely defined symptom with unsatisfactory outcomes.”  In addition, says Kugler, MS studies often fail to understand the difference between fatigue, depression and lack of sleep.  I translate those statements to say: They’re shooting in the dark.

Defining MS fatigue

The Colorado State physiologists hope to find a way to shine a light on that target.  They begin by offering this definition of fatigue: “The decrease in physical and/or mental performance that results from changes in central, psychological, and/or peripheral factors.” They define “central” factors as things related to the central nervous system.  “Psychological” factors include mood disorders, motivation, performance feedback, and arousal. “Peripheral” factors are physical changes.

All of these depend upon what the authors call “conditional dependencies”: what the person with MS is doing, the conditions (e.g., heat and cold) where the person is, and the physical and mental condition of that person.  These all interact with each other, as well as with the “factors” listed in my previous paragraph.

Assessing MS fatigue

Since MS fatigue isn’t a one-size-fits-all problem, the physiologists suggest that doctors measure it using multiple tests. These include electromyography, metabolic measurements,  transcranial magnetic stimulation, magnetic resonance imaging (MRI), and near infrared spectroscopy.

Then, overlay the test results against the standard definition of fatigue that the Colorado State physiologists have proposed. “By using a uniformed understanding and measurement of fatigue,” they write, “progress may finally be made in effectively treating the symptoms of fatigue and improving quality of life” for MS patients.

A patient’s view

Sounds pretty logical to me.

There’s no doubt that my fatigue is affected by a number of factors, just as the Colorado physiologists suggest: heat, lack of sleep, stress, occasional depression.  If I told a doctor I felt warm I’d expect to have my temperature taken … or my blood pressure measured if I was stressed.  But no one has ever measured my fatigue.

How, and how much, does my fatigue change from day to day, and how can it best be treated?  A drug like Provigil can be prescribed to improve my alertness if my fatigue is due to lack of sleep, but what if it’s due to stress or depression … or a combination of them?

I think the Colorado State researchers have the right idea.  Now, I’d like to hear the thoughts about this approach to handling MS fatigue from the neurologists and other medical professionals who may be reading this.

(You can see other posts from me on my personal blog:

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Multiple Sclerosis. 

Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.
Ed Tobias is a retired broadcast journalist. Most of his 40+ year career was spent as a manager with the Associated Press in Washington, DC. Tobias was diagnosed with Multiple Sclerosis in 1980 but he continued to work, full-time, meeting interesting people and traveling to interesting places, until retiring at the end of 2012.

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  1. Aukje says:


    I did rehabilitation for fatigue at a clinic and have used amantadine but the side effect that got me to stop was an increase in cavities. My dentist wasn’t very happy.

    So now I spend long periods of time in bed and on the couch and trying to do my housework in between naps.

    Sometimes I don’t feel like I’m living. I’m surviving.

    But I am happy. I get depressed from the fatigue. Not the other way around.

    • Ed Tobias says:

      Hi Aukjie,

      Thanks for your comment.

      I think you need to ask yourself which is worse, an increase in cavities or spending a lot of time in bed….just “surviving” without cavities or living better with some cavities. Maybe your dentist and your doctor can speak with each other and work out a compromise.

      I use the oral medication Provigil (genericic name modafinil) to help with my fatigue, although mine isn’t anywhere near as severe as yours. You might ask your doctor if Provigil would be appropriate for you.

      In any event, please feel free to contact me, or anyone on this web site, anytime you need support. We’re here for you. Also, please let us know whether you find a way to reduce your fatigue.


      • Aukje says:

        Hi Ed,

        Thank you for your comment.
        Reading back my comment I see I forgot a piece of information. It isn’t always like this. It comes and goes in waves. I haven’t been able to identify what is the trigger of these episodes, but I do believe stress and specially my own problems with ‘accepting’ what MS has brought to my life.
        Besides the cavities/dry mouth I noticed after only two weeks that the drug was loosing its effectiveness.
        I’ll see my MS nurse in about two weeks. I’ll ask her about the modafinil.
        I come from the Netherlands so sometimes I can’t say things the way I mean or miss stuff from this fatigue. I apologize

        • Ed Tobias says:

          Stress can certainly make MS symptoms worse, Aukje. Your MS nurse may be able to help you to identify what’s triggering your episodes when you speak with her about modafinil.

          Your English is quite good. It’s certainly much better than my Dutch was when my wife and I visited Amsterdam about two years ago. (We didn’t speak any Dutch). 🙂

  2. Diane says:

    ???? Many Thanks for your interesting article ????

    Personally I was diagnosed end of year 1999 having MS. In the beginning I also suffered under tremendous fatigue. Now my medication is : twice daily : 240 mg. Tecfidera (Dymethil Fumarate) which helps me a lot against fatigue and stops the progression of the illness.

    My physician prescribed me also Lyrica 50 mg. one tablet in the evening, it helps to sleep well.

    Against spasms I took Lyoresal and now Magnesium Complex 100 mg

    I wish it can be helpful to someone else, that is why I write this.

    Good Luck to All Courageous MS Fighters – It is a very hard disease, we are over 2’000’000 (2 Millions) in the world . . . ! Do not give up, one day, Scientists are going to find a solution for us all, perhaps with stem cells, or something else . . . ! Research is on the good way . . . !

    ???? ???? G O O D L U C K T O A L L O F Y O U ???? ❤️

    • Ed Tobias says:

      Hello Diane,

      Thanks very much for sharing all of that information with us. I’m sure that it will be useful to many who read your post.

      Yes, there are positive research results all of the time. (And we report many of those results on this web site). We’ve come a long way since I was diagnosed in 1980 and I’m sure that progress will continue.


    • Heather says:

      Thank you Diane,
      I have just started taking Tedfidera after being Diagnosed in June this year. I get very tired in the sfternoons, I work for myself so at least I can rest when its quiet! I am still getting used to my diagnosis and coming to terms with it. I too feel that research will bring us good news soon. x

  3. Judy Lynn says:

    Great article- such an important topic! I’m anxious to look into the measurement tools you listed, no provider has ever attempted to measure my fatigue…even on a simple scale, like the pain scale.
    I also want to check out the other comments here. But first I have to take a nap!
    It’s funny…but true.

    • Ed Tobias says:

      Hi Judy,

      I’m glad that you enjoyed the article and I hope the information will be useful to you. I certainly understand about napping. 4:00pm to 7:00pm is usually my sleepy time. If I can re-charge with a nap around 4:00pm I’m much better off.


  4. Judy Gorman says:

    Hi all,
    Fatigue and I are BFFs. It is my most annoying symptom. I was diagnosed in 2003, but like many of us, I’m sure I’ve had it longer. I was diagnosed with both chronic fatigue syndrome and fibromyalgia in the 1990s. I find that I nap when my body says to and for me it is also extremely varied. I enjoy the better days and snooze on the others. For me, I find that accepting ms is an ongoing effort as it continues to bring new challenges into like as time goes on. Best of health to all and thanks for the article Ed.

    • Ed Tobias says:

      Hi Judy,

      Thanks for taking the time to share your thoughts. Unlike you, my low point is usually pretty consistent…right around dinner time. So, I try to sneak in a nap in the late afternoon. My best time of day is prior to noon. Let’s hope that better measurement of fatigue can lead to better ways to address it for each, unique, MS patient.

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