How Does MS Affect Your Sleep?

How Does MS Affect Your Sleep?

Fatigue is one of the most common and frustrating symptoms that comes along with multiple sclerosis. In MS there is both fatigue and what is known as lassitude. While fatigue can itself feel debilitating, lassitude is the more severe type of MS fatigue. Lassitude is defined as, “A state of physical or mental weariness; lack of energy.” Nationalmssociety.org gives several examples of lassitude and how it is different from the type of fatigue experienced by people without MS. Here are the examples of lassitude and how it affects us that they have listed:

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

Fatigue, lassitude, insomnia

My biggest symptom and largest hurdle with MS is my fatigue, and sometimes lassitude. It has always baffled me how I can be so incredibly tired all day long, and as soon as I climb into bed my mind won’t shut off enough to let my body rest. I have had trouble sleeping for as long as I can remember. Cue the counting sheep-in fact, many nights I have to count as high as I can until I finally drift off. Many things can affect your ability to sleep, but side effects from medication and stress were once my biggest issues. I no longer have issues sleeping because of those things, but it is still extremely difficult for me to close my eyes and fall asleep like any other person. I often have to take an over the counter sleep medication just to fall asleep, otherwise it will take me hours trying to do it on my own. I have heard from several doctors that MS and insomnia are not directly related. However many MS symptoms, such as spasticity, frequent trips to the bathroom, temperature dysregulation (hello, hot flashes) and medications can most certainly disturb your sleep. It is also noted that damage to our key neurological functions can disrupt our basic physiological processes, including maintenance of regular sleep-wake cycles.

Needing sleep to function

Sleep is crucial in order for me to function daily. In college I tried the staying up late and surviving on as little sleep as possible, but honestly that just wasn’t for me. Today, I make sure to get in bed at a decent hour so that I can get at least a good eight hours in. But, it seems that no matter how much good sleep I do get, some mornings I wake up and feel as though I have not slept at all. Some days it seems that no matter how much actual sleep and rest I do get, that my body and mind are just never fully rested. This can be so frustrating, because you feel as if you need to get up and start the day, get things done, etc. but your body is so tired it won’t let you. Sometimes, when I wake up feeling so fatigued I feel as though I just wasted time sleeping, while I could have gotten things done–because when I do wake up it feels like the sleep didn’t do me any good after all. And, then on the days I am unable to get adequate sleep I can become so tired that I almost feel hung-over. My body will feel sick and my head will ache as if I’ve spent the entire night on a drinking binge, when in all actuality I haven’t. Oh, and then there are the times that I do get adequate sleep, but because of my bizarre dreams I wake up feeling spent.

I can tell you one thing; life with MS is anything but boring…especially if your sleeping issues are anything like mine. So, tag you’re it! Please, tell me how does MS effect your sleep?

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

View Comments (28)
  • Polywog
    4 months ago

    Yes, I experience all of those things and then some! Like many others with MS, I also have a combination of central and obstructive sleep apnea which makes apnea even more frightening and difficult to treat. Overheating is another BIG issue for me. (I even wear small ice pack headbands at work…in air conditioning…and with a fan on me). Once I get my CPAP mask on, I add an ice pack to my head and/or neck to help me cool down to a comfortable temperature. If there’s back/hip pain going on, I also have to go through a minor ordeal of adjusting three different pillows in a specific way to lessen the pressure pain. Then I sleep, or rather some semblance of what looks like sleep. It’s just sad and even more exhausting.

  • Estelle
    10 months ago

    I find nights are not something I look forward to. I am up at 5 o’clock every morning, put my dog out, feed him etc. My nights consist of going to bed about 9, sleeping and then the times of awakening start. Every two hours and I can time it on the clock by my bed. My mind then goes through my life. Most of them I can’t remember now, with MS.

  • WinterSnow01
    1 year ago

    Yes, its hard to fall asleep. I usually drift off around 1am , others may think this disease us funny but as for me I loathe it and just want to be free if it. I’m so ready to move on. I’ve had this gd illness since age 17 am now 63 next month. Life isn’t life with it.

  • Estelle
    10 months ago

    I understand completely and I am now 83 and have lived with MS at least 50 years. See, my memory will not let me remember how many years exactly. Nothing to do with age but MS.

  • itasara
    1 year ago

    I have been a night but my whole life. I stay up late and I get more things done during the sleep hours. I will go to bed sometime between 12 and five in the morning and because I don’t have to usually get up in the morning I will get a good five hours in which is all I need. So if I go to bed let’s say at 3 a.m. and wake up at 9 AM I’ve gotten a good five hours. My biggest sleep issue of t came in April through September when I came off hormone replacement therapy I had been on for 25 years. That is the first time I have experienced lousy night every night. I found some very interesting sites online of women who have come off of therapy and also had a decrease in the quality of life whether or not they had MS or any other disease or none at all. I was having some problems with it which is why came off but was so miserable without it. So at the moment my doctor and I decided to do some trial and error because there really isn’t enough evidence to know about this in age groups from 50 to 80 who have struggled with this and some who have decided they will never be able to come off it and I think I’m going to be in that category. So anyway I started retaking the hormone therapy about two months ago and my quality of life has already improved and I’m experimenting with taking it every other day. I still have some hot flashes especially at night and in the morning but they are much improved over what I was experiencing. I’m not waking up totally soaking wet every night as I was those months I was off The HRT.I don’t think there is enough research yet to show the connection between MS and hormone therapy after menopause. Menopause in itself can cause sleep problems. Because I started the HRT when I first started with menopausal symptoms I never totally went through it but coming off of it abruptly as I did put me deeply into menopausal symptoms and I don’t hear too much about this in a lot of blogs about MS and insomnia but I definitely think it’s a factor that should not be avoided.

  • itasara
    1 year ago

    For those who posted about taking Ambien, I do have to warn you that Ambien is a very addictive drug for many. Look it up online and see how many have been on Ambien and then tried to get off of it With much difficulty. The only way to get off it is to slowly decrease the doses on a timetable.Personally I don’t think their drug should even be on the market. My husband took it for a while and he had the best sleep ever until he realized how difficult was it when he did not take it and he talk to his doctor and went on the schedule to get it off his regimen.

  • freedom
    1 year ago

    Insomnia was one of my many symptoms that I had before diagnosis. Before MS I slept beautifully. I’ve always been told it’s MS related. I’ve have had 4 different sleep studies that say I have chronic insomnia. It’s one of the more distressing symptoms. If I don’t take all of my drugs… I literally stay up all night. Most nights the drugs work. But it seems my symptoms can really bother me at night randomly or if I do to much. Pain, spascity, numbness and tingling and frequent trips to the bathroom just interfere with falling asleep.
    Well I think I just vented!!! Thanks for your article .
    ,

  • Lisa22
    1 year ago

    I do not have fatigue during the day and I can fall asleep …but I wake up within 2 hours and this goes on all night like this. If I take a sleeping pill(Zopiclone 7.5mg) I can sometimes get 5 hours of uninterrupted sleep…love when this happens! Anybody else have this situation? No Fatigue or pain issues but problems sleeping nevertheless.

  • BeckyAnn
    1 year ago

    Can you come talk to my husband? He makes me feel so guilty for being tired..then add in the stress of our own business and a 21 year old bi polar daughter..a 17 year old who thinks she knows everything and a 11 year old who is a karate kid with practice all the time.
    Bathroom trips and pain is my night time terrors.
    Thank you for this article.
    It hits home.

  • queenbiotch1966
    1 year ago

    You have hit the nail on the coffin! If I get 15 minutes of sleep, I’m doing well. I’m useless most of the time. Going to school is killing me; however, I refuse to give up! Great article. Thank you!

  • Stanner
    1 year ago

    I rarely have trouble getting to sleep, but a regular need to get up to use the bathroom prevents me from getting a lengthy night of unbroken sleep and wakes me in the morning long before I would like. (One item that has helped by at least eliminating trips to the bathroom is a Uribag I bought on Amazon, that I leave at the side of the bed. Obviously it doesn’t prevent breaking into my sleep but at least I don’t need to traipse down the hall, turn on the lights, and fully wake. Small victories!)

  • kunukia
    1 year ago

    Yep. I experience lassitude, or weariness every day. Sometimes I sleep very well, but sometimes I can barely sleep at all. I still feel weary.

  • LuvMyDog
    1 year ago

    “lassitude”, n. weariness….Why not just say weariness? Or, Extreme weariness!
    I AM EXTREMELY WEARY!!
    I am tired 24 hours a day. I can no longer accomplish much of anything. The Summer made it worse. The heat and humidity, I felt like I was wearing cement shoes and was carrying a few cement blocks all day long.
    The cooler weather is helping but that constant tired feeling with no energy persists.
    Some nights I can fall asleep in 10 minutes, other nights, it might take 10 hours and with only an hour or so of sleep, I feel like I’ve been run over by a train………..twice! Horrible brain fog, pain, you name it.
    I would wish MS on my enemies and all of the hateful cruel people in this world, only they…. deserve it.

  • WinterSnow01
    1 year ago

    Agreed

  • Gooch
    2 years ago

    I often go to bed exhausted and fall to sleep without a problem. The problem starts about two or three hours when I have to get up and go to the bathroom. Then it’s anybody’s guess if I can fall back to sleep. Throw in some cramping legs and we’re off to insomnia land, which doesn’t bode well for cognitive function later on in the day.

  • kettlemess4u
    2 years ago

    First time I have replied to a post but just had to this time. This all is what I go though every night. Take baclofen for muscle spasms and it helps some but not enough. So between my mind not shutting off and trips to the bathroom I’m lucky to get five hours sleep. I don’t want to take any additional meds so guess I’ll live with it. I was diagnosed in 1979 and feel blessed that I am not worse than I am. I have right leg problems with drop foot(just started using a cane ).Of course all the non-visual things that go along with MS. Anyway , I am very appreciative to all of you with your posts. I don’t feel alone . Or maybe a little nuts( could be though) lol!

  • Julie
    2 years ago

    I love the stories on MS that the neuro will tell MS’ers to get a good night sleep. It’s important for our well being. Makes me laugh. Not that it’s funny. More ironic, right?

    I think of the dumbest things, worry over them when I should be sleeping. I don’t why I do this. I lay there and think, stop thinking!! Why are you worrying about these random things?? My brain has worked like this for as long as I can remember.

    I have yet to find anything to help me. I dread thinking about telling my neuro. I don’t want one more pill to take. I’ve been trying OTC drugs. I’ve been using Tylenol PM lately, only not the Tylenol brand, I use the Walmart off brand one. It helps me some, but I still have nights where the sand man just won’t show up.

  • Loopyone
    1 year ago

    Ambien is what has saved me. Have had insomnia all my life and I also think of the dumbest things and worry over them.

  • chicago2lubbock
    2 years ago

    My pain often wakes me up along with constant trips to the bathroom then I tend to stress about the next day because I’m still working part time. There are some nights when I can’t turn my brain off. My dr gave me ambien to help me sleep but I don’t want to rely on meds to help me sleep. I also have a sciatic nerve that seems like it’s always inflamed because I never rest. I can’t I have 2 girls ages 7 and 10 so they’re always in need of something. I completely understand where your coming from and it does suck!!

  • Calie Wyatt moderator author
    2 years ago

    Thank you all so much for your comments! It’s comforting to know that so many can relate and understand what I’m going through-although, I wish so badly none of us had to deal with this mess! Sleep trouble is never easy, and adding MS and all of its issues on top is even worse!

    Wishing you all the best this year!
    ❤️-Calie

  • potter
    2 years ago

    Running to the bathroom and dry mouth is what keeps me from sleeping. The dry mouth from taking Tefidera is the worse part of the night. I wake up several times choking because my throat and mouth are so dry. I keep water and sugarless gum nearby. Potter

  • Estelle
    10 months ago

    I have dry mouth every night. Have a glass of water by my bed and take no medications. It is just an effect that MS has on ones body, I believe.

  • JanG6036
    2 years ago

    Well you asked with the Tag your it and here it goes. I get those hot flashes that send the TN into over drive affecting the Right side of my face ( Stabbing consistent Pain in the R side of chin, gums, R eye, R side at the base of the skull ) Then there is the Uncontrollable Hot pain in my R arm from the shoulder to the fingertips Every night and/or its those stupid hot flashes off and on all night letting me get maybe 4 hours of sleep not including being up every 3 hours for Pain meds ( yes Pain meds )
    Then there is the Sleep Apnea which I use nothing because the machine is to noisy or I can’t sleep/rest with air being forced in my face. I also have those strange dreams.

    this isn’t even adding in the Spasms in my legs. I so know the damn I want to sleep but can’t issues

  • TraceyG
    2 years ago

    Thank You for sharing! I don’t spend much time in these sites, but your comments really touched home with me. I sleep a 5-6 hour night. I have sleep apnea with central sleep apnea and use a bipap. It doesn’t seem to effect my amount of sleep or urge to nap. Sometimes I need a nap in the morning and afternoon! I can’t seem to control it. I can just drop off even while on computer, watching tv, or reading. I experience the weird dreams too. Also the brain fatigue and inability to find words or names. I know exercise helps the most but it’s a catch 22. You have to have the energy to exercise!
    I have never heard of lassitude before your post.

  • PegLeg
    2 years ago

    Predizone was is the reason for my insomnia,, I have tried other methods for getting more rest,, but nothing has worked yet

  • Ann osterberg
    2 years ago

    This is me . I am so tired all day then I get into bed and toss and turn for hours. As soon as my head hits the pillow I’m wide awake. It’s so frustrating.

  • Brenda777
    2 years ago

    In my teens and early 20s I suffered from depression and when I reached my early 30s I started having panic attacks. I taught myself to sleep on command through breathing and mental imagery tricks. This was an effective defense for a time. It even allowed me to ‘override’ the initial symptoms that presented when my nervous system began to trip out. Now…I am exhausted all the time. Sometimes I feel the overwhelming urge to sleep and give in. Before it was a way to refresh and escape but now it scares me. I don’t want to be sleeping when I have life to live. Other times I find that physical symptoms such as numbness, burning or spasticity prevent me from sleeping. I also have the wild dreams sometimes, but I suspect those are related to the failure to achieve deep sleep.

  • 1gr9gy4
    2 years ago

    My husband has recently developed great difficulty in going to sleep, spending hours staring at the ceiling and then sleeping finally at 3am.He says he is not anxious about anything except that he can’t sleep! Last night he did sleep. I hope we have found something that works. He took 2 3mg. melatonin pills plus he drank some of a nighttime drink I read about on facebook from a paleo site with coconut oil, tumeric, ginger, pepper corns and coconut milk. As I read all the comments it is very helpful to know that others with MS are dealing with this problem. It is not just daytime fatigue.

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