Look all over the net. Look in books. Talk to people with MS. Pretty much everyone will say “fatigue” is the most common and sometimes most debilitating symptom of Multiple Sclerosis. But what exactly is fatigue? What causes it? Well, there are many different causes but first you need to identify what kind of fatigue you are dealing with. What kind? Yup! There are two basic types of fatigue in MS and it’s very important to determine which kind you may be experiencing as it greatly affects how you can manage it. So what are the two types of MS fatigue?
First let’s just get a basic definition of fatigue so we have a sort of “baseline” to compare things to when defining these types of MS fatigue.
Fatigue; “Weariness from bodily or mental exertion” –Dictionary.com.
What does this mean? Well, basically, it means you have overworked yourself (physically or mentally) to the point that you are out of energy; you’re exhausted to the max. Why then, if you have MS and haven’t done anything of the sort, do you feel fatigued all the time? Because you’re most likely not experiencing the “normal fatigue” that a healthy individual experiences! I have overexerted myself many times in my life either working, hiking, or studying and that is nothing like MS fatigue; MS fatigue is more like being horribly sick with the flu and feeling like your body just wants to stop functioning and collapse. That is where the term “MS fatigue” is thrown around but even that is not specific enough.
So, when we talk about “basic MS fatigue” what we are talking about is fatigue due to MS symptoms and the difficulties they can cause. Maybe you’re not getting enough sleep because you have to keep getting up throughout the night to use the restroom? Perhaps you sleep a full 8 hours but it wasn’t good sleep because you couldn’t turn your thoughts off? Maybe you have certain physical limitations that make completing normal tasks seem like a huge endeavor because they take more time and energy? Things like that can be the cause of MS related fatigue and might simply require some lifestyle changes to improve your energy levels. Seeing an Occupational Therapist can be great for this as they can show you how to work with your disability to find easier and more “energy efficient” ways of completing various tasks. If you have bladder issues and have to keep waking up throughout the night to use the restroom a doctor can prescribe you something like oxybutynin to help control your bladder. Easier yet, don’t drink anything for 1-2 hours before you go to bed! Most the causes of this kind of MS fatigue may only require some lifestyle changes that can greatly help.
But what if none of these things are issues for you? No matter how well you sleep or how easy you try to take it, you’re just always tired! Sometimes even right after waking up from a great night’s sleep! This is what is called “lassitude”. Lassitude is unique to people with Multiple Sclerosis, the cause is not yet known but there are specific characteristics that help define it separately than “basic MS fatigue”. Lassitude usually occurs on a daily basis regardless of how well you slept and tends to get worse as the day progresses. It can come and go randomly at any point in the day and usually is made worse (or started) by exposure to heat or stress. Finally, it’s said to be more severe than regular fatigue.
I can tell you that I have lassitude and not just MS fatigue (not to mitigate how horrible any form of MS fatigue is) and it makes life miserable. Nothing I did helped my fatigue, it was just always there, like I was dragging an anchor around or giving a piggyback ride to a car! It was affecting my quality of life and what I could actually do. Then I started taking Nuvigil and it changed everything. I wouldn’t say I ever feel “normal”, it doesn’t give me a “boost” like an espresso, but it helps keep me awake so long as I manage my sleep and stay busy after taking it. Some people say “Provigil” (the predecessor to Nuvigil) helps them better. There are a few other medications that can be used but that is up to you and your doctor. As I always say, what works for one does not work for all. You have to find the medication that works for you and figure out if anything else that you can eliminate (or change) is adding to that fatigue.
You see, even if you have determined that you experience lassitude, the causes of basic MS fatigue (related to MS symptoms) can still greatly affect you. This is why it is important to try to eliminate any contributing factors to your fatigue before moving on to something like medication, which can sometimes cause unpleasant side effects. When I first started taking Nuvigil, I would get the worst headaches; so bad that I stopped taking it for a while. Some say it’s always like that at first but then gets better after a while. So I tried it out again and like going through withdrawals backwards I have been able to use this medication everyday without any side effects anymore.
So for me? I take Nuvigil in the morning after a solid 8 hours of sleep and then try to stay as busy as I can throughout the day. If I just sit around and don’t keep moving I start feeling my fatigue get the best of me and sometimes, even if I am keeping busy, I have to drink a cup of coffee or two in order to make it through the day. Some people with MS react poorly to caffeine but not so much for me anymore (it used to give me really bad restless leg syndrome). I think staying as busy as you can is important because staring at the TV or computer all day can lead to boredom and cause you to grow tired due to a lack of “stimulation” to the brain. No scientific information there (that I know of) that is just how it feels in my own experience. Exercise may be difficult for many people with MS (especially when you’re dealing with fatigue in the first place) but for many people with MS they say it helps once they have a consistent routine down. I hate exercising but I would be lying if I said it did not help with my fatigue. I will talk more about exercise in another post but for now I just wanted to differentiate the two types of MS related fatigue.
Touching back on what I said at the beginning of this article (pretty much everyone will say “fatigue” is the most common and sometimes most debilitating MS symptom), I can tell you that in my experience, if I could make just one MS symptom go away forever, it might very well be my fatigue. The work required to manage my fatigue is sometimes fatiguing in itself!