MS Fatigue 101

by tinglyfeeling on February 11, 2011

Most people with MS have to deal with the crushing fatigue that comes along with it. I like to code-name this fatigue, “the special kind of tired” because it’s really hard to explain it to someone who doesn’t have MS. Everyone gets fatigued–but this is totally different than regular exhaustion that can be attributed to over-exertion or temporary illness like the flu.

You simply wake up with it one morning and then for the rest of the day, you feel as if you’re walking around with weights attached to your limbs. You can get out of breath just bending over to tie your shoes. Holding up your head takes conscious effort. Walking feels like forcing your legs against an ocean current. Standing up from a seated position can make you light headed, as if you’re experiencing vertigo or about to black out. This is especially fun when it happens in a public bathroom stall. Not the kind of place you want to lose your balance, for sure. And, yeah, fatigue makes you feel helpless and depressed. Sometimes I get so tired and frustrated that it’s hard to fight the urge to cry.

So, as you may have guessed, I’m experiencing the special kind of tired today. As I put it in a tweet a few moments ago, I feel like a droopy balloon.

I’ve of course had MS fatigue LOTS over the course of the nearly 3 years since my diagnosis (and probably before then), but I’ve never bothered to look up what it is. So I Googled, and discovered that beyond the fatigue caused by the daily physical challenges of MS, there’s another element to it called “lassitude.”  This is how the National MS Society defines the characteristics of this particular brand of fatigue:

  • Generally occurs on a daily basis
  • May occur early in the morning, even after a restful night’s sleep
  • Tends to worsen as the day progresses
  • Tends to be aggravated by heat and humidity
  • Comes on easily and suddenly
  • Is generally more severe than normal fatigue
  • Is more likely to interfere with daily responsibilities

While I don’t have lassitude (I learned a new word!) on a daily basis, the rest of that list definitely applies to me. Especially the part about how it’s aggravated by heat and humidity, which, for me, can sometimes explain why it comes on so suddenly. Also, some foods, like sugar or wheat, can make my fatigue worse. But I still eat them (pizza! BLTs! yum!).

Of course, like with MS itself, the causes of fatigue are unknown. And treating it is as much of a crap-shoot as treating the rest of this stupid disease. And for anyone who wonders if this is something you can sleep off, the answer is no. Or maybe. Or who knows? The only thing I can be certain about is that MS fatigue is definitely a major drag.

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  • soshime

    if you’re not adverse to secondary meds, try something like adderall to fight the droop. you can take it as needed, and it’s ADHD -fighting effects help with the cognitive issues that sometimes come along with the darn fatigue. because you’re right – sometimes sleep just isn’t enough, no matter how many naps you take. and it’s unrealistic to spend all day in bed when there’s a great big world out there.

  • tinglyfeeling

    i haven’t looked into secondary meds at all, preferring to keep things simple with just avonex (not that any part of taking drugs is really simple).

    i’ve talked briefly with my doctor(s) about anti-depressants, but my dips in mood are so fleeting that they don’t recommend i take those.

    but! adderall is something i have heard about from my MS support group. i’ll ask them about their experiences with it at our next meeting, which is tonight!

    thanks for the comment and the advice!

    droopily yours,
    tingly feeling

  • Annaresa

    I’m struggling to type this as crushing fatigue and weakness has overwhelmed me.  I want to cry, but I’m too tired and numb physically and emotionally.

  • Mkisses

    Adderrall is highly addictive and often dosage will need frequent upping ss you become use to it. Have had MS for over 20 years. A doctor put me on adderall and I lost so much weight. It was very dangerous. I went down to less than 85 lbs. It works for some, just be extremely cautious! I now take B complex and that helps a lot and it is safer.

  • Fatigue – Like walking against the tide when a wave is against you « MS: An "invisible" illness I fight like hell,

    [...] by tinglyfeeling on February 11, 2011 [...]

  • Michelle

    I’ve been on Adderall (15mg) for 1 1/2 years. I’m finding that the fatigue and lassitude are one the rise again. It just doesn’t seem like the Adderall is working as well as when I first started. While I recognize that the dosage is quite low, I’m not sure I want to increase it. Not sure what I’ll do – I see my doctor in a few weeks.

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