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The Relationship Between Fatigue and Insomnia

The Relationship Between Fatigue and Insomnia

Pretty much everyone with Multiple Sclerosis has experienced or has to deal with fatigue but what is fatigue? Fatigue is not just “feeling” tired; there are different types of fatigue with different causes. They may feel the same but describing the difference is almost too difficult for most people. Trying to describe the subtle difference between the different types of fatigue is like trying to describe the difference between two different shades of one color. Pastel blue VS aqua blue. That can be much more difficult than describing the difference between two different symptoms or two completely different colors. Fatigue VS insomnia and blue VS orange.

So what causes fatigue in Multiple Sclerosis? Well first we need to have an understanding of what fatigue actually is. As I said before, fatigue is not just feeling tired. We feel tired after doing hard work that burns off all our “fuel” (energy) whether it is physical work (cleaning the house, yard work, a job, etc) or mental work (paying bills, managing appointments, school, etc). Keep in mind we all have different sized “fuel tanks” meaning, everyone has a different capacity for how much energy they have to work with throughout the day and when we use all that fuel up (some faster than others) we feel tired. MS Fatigue is basically the result of running out of energy due to MS symptoms keeping you up at night or because any given task uses more energy than it should. Taking out the trash may feel like running a marathon! Why? Well that is not entirely known. The last form of fatigue is called lassitude and is unique to people with MS. It is fatigue that occurs for no reason at all generally on a daily basis even after a great night of sleep that should leave you feeling energetic for the day. Fatigue that is caused by exposure to heat or humidity is also considered lassitude. Lassitude generally feels more severe than fatigue and worsens as the day goes on making it much more difficult to complete your daily tasks. So MS-related fatigue can be caused by symptoms burning energy, tasks requiring more energy than they should, or for no apparent reason at all! The National MS Society says that about 80% of people with MS experience some form of fatigue making it one of the most common MS symptoms.

Most people living with MS have also experienced insomnia; difficulty falling or staying asleep. Ironically many people even experience both fatigue and insomnia at the same time! Feeling exhausted all day only to lie down wide-awake staring at the ceiling all night! Much like there are different types of fatigue there are also different types of insomnia or rather, different causes of insomnia. Can you not sleep because your mind starts racing when you lie down? MS can obviously cause all sorts of stress or depression. Maybe you can’t stay asleep because you have to wake up to use the restroom every hour? Perhaps leg pain due to spasticity is keeping or waking you up all night. Of coarse insomnia could also just be the result of where a brain lesion is located but I know for me and many others it has to do with fatigue itself. It’s a “vicious cycle”, you see, if I (for example) am feeling fatigued all day I may not want to do anything but just sit around all day or even take a nap. Then when it comes time to try to shut off for the night I can’t because even though I feel tired I already rested or slept all day, which makes it more difficult to turn my brain off! I imagine that I have a tank full of fuel that I didn’t burn off during the day so even though I want to sleep my body still wants to burn off that left over fuel! And so, I am exhausted all day but unable to sleep at night because I didn’t do anything all day!

Managing Fatigue and Insomnia (At a Glance)

There is no “general” solution to MS-related fatigue and insomnia; everyone will have a different method of managing these two symptoms that may create a vicious circle. You may be tired because you could not sleep at night and maybe you could not sleep at night because you slept during the day because you were so tired from not being able to sleep at night! This is one of my main issues when it comes to fatigue and insomnia and I would be lying if I said that I found the perfect solution to manage this and no longer deal with this issue. I do however, know what sometimes works for me but though I might be able to break that vicious circle it is very easy to fall back into it and getting back out seems to be so difficult and that of coarse… fatigues me…

Managing Fatigue (At a Glance)

I have found that in order to break my cycle of fatigue and insomnia I have to overcome one symptom first which slowly makes it easier to overcome the other but it is really hard at first. For me, I try to beat fatigue one day in order to make it easier to sleep that night which means fighting the urge to lie down and instead staying awake all day. This usually requires a combination of medication, fatigue management techniques and will power to burn energy without letting myself sit around all day or take a nap. Medication such as Provigil, Nuvigil, Amantadine, Ritalin, or even things such as Adderall and Dexedrine have been reported to help fatigue. I have tried most of these medications but I build a tolerance to them really fast and they eventually just stop working for me. I try really hard to reduce my exposure to heat and to try to manage my stress because those two things really seem to affect my own MS symptoms. Seeing an Occupational Therapist (OT) or Physical Therapist (PT) can also be really beneficial as they teach you different methods of more easily completing tasks to help conserve energy.

So after a pill, a cup of coffee (I will talk about how caffeine affects MS in a later article) and staying busy while trying to conserve energy all day I can usually go to sleep at night. Trying to burn off energy all day is not always enough though. Sometimes my thoughts are just so loud that even though I am physically exhausted I am mentally wide-awake! This is when I turn to medication.

Managing Insomnia (At a Glance)

There are so many medications that can help you sleep I cannot even list them all! A few “popular” choices are Clonazepam (Klonopin), Lorazepam (Ativan), Temazepam (Restoril) or even Diphenhydramine (Benadryl and most over the counter sleep aids). Which medication will help you depends on your situation. Medication to help insomnia that occurs for no reason may not be necessary for insomnia due to a secondary reason (a symptom) keeping you awake such a having to get up to use the restroom. Maybe all you need is something like Oxybutynin (Ditropan) to help control your urge to use the bathroom. If you can eliminate symptoms keeping you awake perhaps that is all you need to do to get a full night of sleep?

Before racing to medication I would say you should try to create a routine to help your brain recognize that it is time to sleep and to help manage symptoms that could be affecting your ability to sleep. Perhaps two hours before you want to sleep you stop drinking liquids so you do not have to get up all night to use the restroom? Turn off or dim all the lights (and get off your phone, the TV and the computer) one hour before you want to sleep as light tells your brain not to produce melatonin. Melatonin is what tells your brain it is time to sleep and you can actually buy a supplement of melatonin to help teach your brain what time it should start shutting down. Melatonin does not induce sleep it just tells your brain when it is supposed to sleep, which is why it is commonly used for Shift Work Sleep Disorder.

Personally I try to avoid medication simply because I do not like taking pills to fall asleep and then more pills to stay awake. So first I try to cut off my exposure to light an hour before I plan on going to sleep. I try not to use any electronics that produce light (and keep my mind ticking) about 1-2 hours before sleep. I make sure not to drink anything about 2 hours before I plan on sleeping. I use all sorts of white noise (such as a fan) to help distract me when I lie down and I also use a sleep mask to help keep every bit of light from getting to my eyes. That usually does the trick for me and of course no caffeine about 5 hours before sleep.

That is it For Now

There are so many medications and techniques used to help stay awake and asleep that I could (and probably will) write separate articles focusing on each one individually because I just could not get to all the details in just one article. Hopefully now though, you have a basic understanding of the relation between the two symptoms and how one cane make the other worse. What are your own experiences with fatigue and insomnia? How do you manage these symptoms or the things that can cause them? Share below!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • collena
    9 months ago

    I understand the feeling of time ‘getting away’ from you but it you’re really sleeping that long you might wanna take that to your neuro ripvanray

  • Rray032
    9 months ago

    The worst for me is going to sleep and not waking up for 2-5 days later! I’ve missed important appointments and engagements, but not even an alarm can wake me! 🙁

  • Matt Allen G author
    7 months ago

    wow, sleeping for days? That’s definitely something you should bring up with your doctor

  • RonRuns
    9 months ago

    I tried a few sleeping medications. Most worked at first until they lost their effectivness and I became dependant. If I did not take my sleeping pill I wouldn’t be able to sleep at all.
    I weaned from my last medication a few month ago. It was a long and difficult process but I’m glad I did it.

    Instead I’m using CBT-I or cognitive behavioural therapy for insomnia. It’s a process where you reduce the time you spend in bed to the time you sleep by keeping a sleep diary and forcing your self to get out of bed when you’re not sleeping. It is very very hard at first but helps after a few weeks.

    It was recommended to me by a sleep doctor. She told me that I could either read and follow a book to the letter. Do group therapy. Or do individual therapy with a professional, usually a psychologist.

    It does not solve all my insomnia problems but definitely helps getting a good night sleep most nights.

  • Matt Allen G author
    7 months ago

    that is actually what I have found to work best since I wrote this article. Practicing good sleeping habits. What I do for. an hour before bed, what I do in bed all day, just all the little things like lighting and sound. They say you have to create a ritual for going to bed and I thought it sounded dumb at first but once I did I noticed I was not having insomnia as much.

  • janellew1
    9 months ago

    As a natural nocturnal person, I have found that blue light filters only make me much more wide awake, and alert, which has been very helpful in dealing with life. Blue light helps me fall asleep quickly and is, in fact, the only things I’ve found that does. And I am not the only one, we just tend to not talk about it. A shame blue light is bad for the eyes: do I need sleep or vision more?

  • Matt Allen G author
    7 months ago

    That is so odd because they always say. blue light is what tells your brain to stay awake which is why they say not to watch TV or start your phone or any kind of screen for about an hour before you go to bed. But hey, everyone is different right?

  • gparado
    3 years ago

    When I become fatigued, it’s often a sudden onset. I’ve described it as an old cell phone suddenly losing all of its charge without warning. When this happens, I have to sit or lie down, even just for a few minutes.

  • RonRuns
    9 months ago

    It is the same for me. Without warning I get a sudden wave of fatigue where I have trouble keeping my eyes open. Interestingly, it doesn’t happen when I’m doing things, working, etc. It happens when I take a break, go for lunch, get home.
    The only thing that seems to work for me is to take a very short nap. I set the timer to 15 minutes on my phone, lay down and close my eyes and focus on my breathing. I sometimes sleep but that’s not necessary. After, I feel my energy level got a boost. Most days I take at least one such micro-nap.

  • Matt Allen G author
    3 years ago

    Well does it happen after doing something or after even just sitting and watching TV all day? Either way it sucks but might be able to point you in the right directions as far as better “coping” with it

  • thumper
    3 years ago

    The type of Fatigue I experience is so Hard to explain. I might be cooking or cleaning for example and then I just” Hit a Wall”! I know I have to finish my Meal and my Body just Quits! I do Everything I can to Muster Up enough energy just to get to a Couch and” Ride It Ou”t! If I allow myself to Re-Group I’m good again. Anybody out there know what I’m talking about?

  • Sbyrd2
    5 months ago

    I completely understand no one I know understands fatigue I experience! Especially, when I get you slept 8 hours you can’t be sleepy!!! I’m tired of explaining how hard it really is to live with MS?

  • Matt Allen G author
    3 years ago

    That is the same thing for me, and since I don’t have any of the issues that would really cause “typical fatigue” I would say it’s lassitude but it’s not like the doctors use that term, to them fatigue is fatigue and if they can’t find a cause such as sleep issues then, well, it’s just the MS, so it sounds like it’s lassitude as in, just the MS causing fatigue for no apparent reason. You might need medicinal intervention haha, talk to your doctor if you have not already (I am sure you have).

  • LoLo*
    3 years ago

    Funny and ironic I’d say, because I’m reading this article at 2:12 a.m. I am trying to get back to sleep after sleeping for approximately 3 hours. All. At. One. Time. Lol. All day I’m sleepy at work, but manage to work, but count the minutes to get home and get to the part of the day ( after cooking etc) where I can lay down. Now here I am, and it’s baffling.

  • Matt Allen G author
    3 years ago

    Sounds pretty typical… If you can’t get to sleep by working on a routine and that kind of stuff you might need medication from your doctor, I find Restoril (Temazapam) to work best but everyone is different and I am no doctor so I can’t really recommend anything, I can only tell you what works for me. Cannabis oil works amazing too, I stopped taking all my sleeping pills with that stuff, but that obviously depends on your state laws/work and like anything else, what works for one won’t work for all. Good luck!

  • Mswritr
    3 years ago

    I have had MS for 22 years now, so I was basically aware of what you spoke of; however, it is always nice to read something to validate the things you “think” you know! Despite the MS being problematic, I have been a problem sleeper all my life. When I was a small child I had adult sized tonsils, and before that I was a colicky baby. Then around the age of 10, I began to have he symptoms of Restless Legs Syndrome– 5 years before my first MS flare-up…. There are times I can sleep like a baby, and there are other times I can be awake all day but tired and maybe “doze at night” but not really get any sleep… Oh and when I do sleep I only sleep in REM sleep…unless I sleep for several hours, 2 sleep studies to prove that one! I have taken all he meds you have mentioned and Restoril is the only one that worked for me without knocking me way out…or making the RLS way worse…. And then of course there are those times when the Lassitude takes completely over…I have been go go go and had to sit down and I’m like just out like a light for anywhere from 30 minutes to several hours…almost like Narcolepsy, except I can tell it’s happening and can get somewhere etc but it literally feels like a wave washing over me…..
    MS fatigue is like nothing I have heard described before or experience as a child….being diagnosed at 16 it’s my only reference…. The fatigue is like it’s own relapse…

  • Matt Allen G author
    3 years ago

    RLS was one of my first symptoms, now THAT made me feel crazy haha. But yeah, the fatigue really is like it’s own relapse,

  • Nobu
    4 years ago

    I used have a real problem with insomnia – my sleep was impacted by leg pain and spasticity. Since I have been taking meds for neuropathic pain management – Cymbalta at this time my sleep is fine. But fatigue is still an issue. I know that moderate exercise helps me with fatigue but I am just like anyone else and need a kick in the tush to exercise. It seems to me as if fatigue is a whole body thing – body – muscles, nerves and brain all act very clouded when I get fatigued.

  • Matt Allen G author
    4 years ago

    Yeah, the way I look at it, fatigue is like your entire body shutting down even though your mind may not be tired. Your body seems to have so little energy to work with that simply lifting your arm can feel impossible.

  • jackie5275
    4 years ago

    I pretty much don’t have insomnia,but fatigue is another matter. However, with me, I have a double dose in that I have very severe anemia that totally wipes me out when my iron therapy treatment runs its course. I can never determine if my fatigue is due to MS or anemia on my own. I have to go to my hematologist to get my iron level checked to make that determination when I start feeling continually tired. Once I know how my iron is doing, I can then say what the fatigue is attributable to and take action to combat it.

  • Matt Allen G author
    4 years ago

    That would drive me nuts. It’s bad enough wondering “am I tired because I overdid t or because of MS?”

  • Lamarfreed
    4 years ago

    True to an extent. But you left out the part where MS symptoms keep us up. Spasticity and neurogenic pain top the list. I found that when I overcame my phobia to taking medication I was both sleeping better and more rested. It turns out that for me the low level spasticity contributed to my fatigue and when I took Baclofin and Klonopin for it I had less trouble. For more on fatigue see my blog at msandmentalhealth.wordpress.com

  • Matt Allen G author
    4 years ago

    Haha when I first read your comment I could not believe that I left something like that out so I re-read my article. You must have glanced over it because it was a quick mention but; “Maybe you can’t stay asleep because you have to wake up to use the restroom every hour? Perhaps leg pain due to spasticity is keeping or waking you up all night. “

  • D-bob
    4 years ago

    Tried Baclofen with unsatisfactory results. then tried cannabis, which is legal to use for MS symptoms in Arizona. and not only did it work faster than the Baclofen, it got rid of more of the pain. PLUS, it helps me get to sleep.

    Oh and, if I stop using cannabis suddenly, the side effect isn’t DEATH like it is with Baclofen.

  • zenhead
    4 years ago

    well said. i have long tried to write about the difference between “regular” fatigue and MS fatigue/lassitude. i have to bite my tongue when people say “yeah, i’m tired too.” add insomnia – “yeah, i didn’t sleep well last night either,” and it’s the double whammy. when my kids were little and would act out, we’d say they were “just tired.” when i have to back out of plans, i say i’m tired. but i’m not tired, i’m “lassy,” my new word. the worst invisible symptom.

  • Matt Allen G author
    4 years ago

    I like that phrase, I might have to start using that because when I am “MS fatigued” it doesn’t even feel like when I am just “tired”… people do not get that but how can they if they have never experienced it themselves?

  • lpgirl
    4 years ago

    I suffer from insomnia a. I have a trick to get muself to sleep, it just doesn’t last. An hour before bed I turn the lights off, turn cartoons on t.v for my daughter, then crawl into bed and play solitaire. the t.v gives the room just enough light to see the cards. when it’s time for bed everything gets shut off and I manage to fall asleep. Within 40 minutes i’m up for the rest of the night. can’t figure out how to stay asleep.

  • Matt Allen G author
    4 years ago

    I do something similar. Turning off (or down) the lights helps stimulate the body’s natural production of melatonin but yeah STAYING asleep is then the pressing issue

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