MS Related Fatigue

What is Fatigue?

If you google the definition of fatigue it states “extreme tiredness, typically resulting from mental or physical exertion or illness”. So regular fatigue? That is right on but MS fatigue is a little bit different. Since about 80% of MS patients experience some sort of MS fatigue it is probably important to understand just what it is.

What is the Difference Between MS and Regular Fatigue?

With “regular fatigue” that anyone can experience (sick or not), it is usually caused by something like overexertion (working too hard) or a lack of sleep. Someone who got 5 hours of sleep and then does a 12 hour day at work is bound to feel fatigued especially if they have to come home and cook dinner for their kids and help with homework. Many factors can cause you to feel fatigued, not just lack of sleep and over working, but even things like stress, depression, or your caffeine high from coffee coming to an end.

In MS you may experiance “regular fatigue” because you have to keep waking up at night to use the restroom. Maybe a medication you take is causing insomnia? Or maybe myoclonic jerks (sleep starts) are waking you up at night?

MS fatigue (Technical term is “lassitude” – a state of physical or mental weariness; lack of energy”) is a little different. The actual cause is unknown! You might sleep great one night but wake up feeling like you didn’t sleep at all! After a day of relaxing and doing no chores what so ever you may feel exhausted! And it’s not just physical exhaustion, you may feel mentally exhausted; unable to think strait or process information. So when you are just “naturally” fatigued upon waking up, the factors I listed above can just push you over the edge! If you were full of energy and going into a day that leaves you fatigued, imagine going into it already fatigue to begin with! How do you think you may feel afterwards? 

Fatigue is a huge reason why people with MS end up leaving work. They aren’t lazy or unmotivated, the fatigue can just become too much to cope with even if they have eliminated every factor that would cause anyone to become fatigued as well as any symptom related causes of fatigue. This is frustrating for many people with MS because a lot of family and friends don’t understand that nothing may actually be causing the fatigue besides the disease itself. “Why don’t you just get more sleep?” as if it were that simple but, when a lot of people with MS themselves don’t understand it we can’t really just expect everyone else to understand right away.

Managing Fatigue

How everyone manages their fatigue is different due to preference, what works for them, and the severity of their fatigue but here are some general tips and options you can try.

  • First treat or eliminate all the non-MS related causes of fatigue that you can. Some things like work or chores can’t be eliminated so you may want to visit an occupational therapist and a physical therapist to learn different ways of getting the job done that are easier and require a little less energy.
  • Sleep regulation; This is obvious and not always as easily done as said. I recommend reading this article on insomnia where I outline a way to set up a sleep routine and medication for if that’s not enough but it has all greatly helped me sleep better.
  • Avoid heat and stress! When I expose myself to warm temperatures I feel so tired! During the summer here in the desert where it hits 110 degrees Fahrenheit (43 Celsius) every day, all I want to do is lay in bed… The more stressed out I get the more fatigued I start to feel. Avoiding these two factors the best you can will greatly improve your energy/fatigue levels.
  • Probably not the healthiest choice but sometimes I can’t make it through the day (or even start it) without coffee. The only problem is the inevitable crash that occurs a while after you finish your cup…
  • On the more healthy side, many people say eating right and exercising (which is hard to start when your fatigued) help maintain energy levels. I try to stretch and do light exercises every morning.

Medication

Sometimes the above practices are just not enough so you have to try the medication route. I tried a few of these and either they didn’t work or they worked too well (along with giving me nasty side effects).

  • Nuvigil – Take this the split second you wake up, as in, have it by your bed so you can pop it right away or else you will most likely have some severe insomnia that night! I stopped taking it because while I was on it I felt like my heart was racing, I usually got a headache, and often could not sleep. It just was not worth the energy. Because this medication is so new, no generic is available .
  • Provigil – This is the predecessor to Nuvigil (made by the same company) and sometimes is the only available medication (between the two) depending on where you are located in the world. Because this medication is older there are generics available.
  • Amantadine – This medication is used to treat the flu but it is also used off-label for MS related fatigue. This did not seem to help me and I think it may have given me side effects but I am not entirely sure: I do however know other people who like it. Everyone is different!
  • Ritalin/Adderall – Typically used to treat ADHD (Attention Deficit Hyperactive Disorder) this is sometimes used to help MS fatigue and some people report that it helps with their cognitive abilities as well.

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