Getting A Good Night’s Sleep With MS? A New Study May Be Onto Something

“Sleep is that golden chain that ties health and our bodies together.” ~Thomas Dekker

When I was first diagnosed with MS one of my chief complaints was the overwhelming fatigue I suffered every day. Like most people with MS, my fatigue left me no choice but to nap, pace myself and sit whenever possible.

I was less productive, my thoughts had less clarity and I felt like less of a person.

Without hesitation (or a proper diagnosis) my doctor prescribed Provigil, a popular medication used to improve daily wakefulness in patients.

It didn’t do the trick.

Instead of keeping me awake, Provigil introduced me to fatigue’s nighttime nemesis: insomnia. Becoming friends with 3AM is not a whole lot of fun.  Neither is being wide awake with the knowledge that your alarm clock will soon loudly ring to remind you it’s time to start another busy day.

I was young, inexperienced about my MS, and frantic about what to do.

The doctors decided to prescribe Ambien, a popular medication used to treat insomnia. It worked wonders. I began sleeping for 6 delicious hours every night.

It was a miracle.

But every miracle runs its course, and after 20 years (you read that right – 20 years!) of Ambien addiction I decided to consult with my doctor to carefully wean me off the drug.

When I was done, I was back to square one. How was I going to get a good night’s sleep?

Since then I’ve done everything I could to get a restful night’s sleep. I spent a night at a sleep study clinic, tried various prescription and over-the-counter medications, practiced meditation, learned sleep-inducing yoga poses, experimented with herbs, and to this day I use a sound machine, ear plugs and an eye mask.

Now that I’m older and more knowledgeable about MS, I’m not willing to rely on prescription medications as the be-all and end-all for my MS ailments.  In my opinion the root causes need to be studied before thoughtlessly handing out prescriptions. That’s why I was happy to read about a recent study at UC Davis that is studying sleep problems in people with MS.

The study, conducted with over 2,300 participants, stressed “the importance of diagnosing the root causes of fatigue among individuals with MS, as sleep disorders may affect the course of the disease as well as the overall health and well-being of sufferers.” They found that problems with sleep in the MS population go largely undiagnosed and untreated. 

Bottom line?

“Sleep disorder frequency, sleep patterns and complaints of excessive daytime sleepiness suggest that sleep problems may be a hidden epidemic in the MS population.” 

I don’t think this is news for anyone living with MS but it’s a start, and perhaps it will lead to newer and better ways of treating insomnia.

The function of sleep is to recharge our batteries.  We walk, talk, think and are more productive after a good night’s sleep. With MS our legs, arms and brains function better.

What can we do?

Here are a few tips from The National Sleep Foundation to help you get a good night’s sleep:

  • Go to bed at the same time every night, even on weekends.
  • Practice a relaxing bedtime ritual.
  • Exercise daily. With MS this is not always possible, so do whatever you can within your abilities.
  • Sleep on a comfortable mattress and pillows.
  • Avoid bright light at night and expose yourself to sunlight in the morning.
  • Spend the last hour before bedtime doing a relaxing activity, such as reading.
  • If you can’t sleep and can get to another room, try that.  Do something relaxing until you feel tired.
  • Use a Sleep Diary to help you evaluate common patterns or problems with your sleeping habits.

If you still feel tired, speak with your medical team or find a sleep professional.

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 (10)
  • north-star
    4 years ago

    Thanks for this article, Cathy. I’m a night-owls, have been since I remember. Like chalknpens, night is when I am ‘cognitively awake.’ MS has made getting to sleep progressively harder for me. I don’t respond well to drugs like Ambien.

    These days all the symptoms I’ve avoided dealing with all day descend and bug me (hugs, tingling, spasticity). I’ve found emptying my bladder “one more time” helps. Taking two extra-strength acetaminophen and making sure I’m warm can, too, but they’re not a sure thing. These days I get absent minded if I’m sleep deprived, that has implications when I drive or have to keep track of things like my keys. Glad there’s research being done, thanks for the links!

  • Cathy Chester moderator author
    4 years ago

    North-star~

    Yes, that ol’ sleep means we have to do whatever we can to find some quality sleep. That means different things for different people. So whatever works for you is great! I’m glad I could share the links with everyone, and here’s a virtual toast to more and more research that will allow us to feel at best a little well rested!

    Best to you always~
    Cathy

  • chalknpens
    4 years ago

    Hi Cathy,
    Another well written, on topic discussion of one of the symptoms that trouble those of us with MS (even those of us who continue to deny MS, and who found the previous article on CIS as well done as your own.) For me, the belated solution to sleep deprivation and its cognitive results was retirement … long delayed due to economic necessity, briefly resented once accomplished, and finally realized as the solution to years of unmitigated fatigue … the short version for me is, sleep when you’re sleepy, and rise when you’re not. I can keep odd hours now to meet my sleep needs … writing when I’m cognitively awake (which is different than simply awake) late at night, and sleeping in on following mornings. As a new mother with the luxury of being home with her newborn learns to sleep when the baby sleeps, I’ve learned to sleep when my brain wants sleep. I function better when I allow my body to regress to that infant-responsive-style, learning to ‘live within my physical means’ stage. Not with drugs … not with society’s clock, but with my own, by the grace of my husband.

  • Edina1448
    4 months ago

    I just wanted to say thank you, your comment really made me say out loud “Yes exactly!”. To be understood with this disease in rare occasions makes my soul happy!

  • Cathy Chester moderator author
    4 years ago

    Good for you, chalknpens, that you’ve learned to listen to your body and respond to it regarding your sleep habits. This is something everyone needs to do. I am glad you have found your own unique way of dealing with sleep and awake time. Good for you, and thanks so much for sharing it with us.

    Best always~
    Cathy

  • chalknpens
    4 years ago

    Hi Cathy,
    Another well written, on topic discussion of one of the symptoms that trouble those of us with MS (even those of us who continue to deny MS, and who found the previous article on CIS as well done as your own.) For me, the belated solution to sleep deprivation and its cognitive results was retirement … long delayed due to economic necessity, briefly resented once accomplished, and finally realized as the solution to years of unmitigated fatigue … the short version for me is, sleep when you’re sleepy, and rise when you’re not. I can keep odd hours now to meet my sleep needs … writing when I’m cognitively awake (which is different than simply awake) late at night, and sleeping in on following mornings. As a new mother with the luxury of being home with her newborn and learns to sleep when the baby sleeps, I’ve learned to sleep when my brain wants sleep. I function better when I allow my body to regress to that infant-responsive-still learning to ‘live within my physical means’ stage. Not with drugs … not with society’s clock, but with my own, by the grace of my husband.

  • Kim Dolce moderator
    4 years ago

    This post is so timely, Cathy. The lack of sleep factor is something that sneaks up on me from time to time, one in which I ignore until I’m dropping off in a narcoleptic heap every afternoon and think I’m having a flare. Legs are weaker, stamina is gone. Eventually I realize that I haven’t been getting 8 hours of sleep at night. After I quickly fix that problem, no more drowse in the afternoons, legs are stronger, and I have more energy. Always a good idea to check ourselves on sleep and eating habits from time to time. Thanks for the reminder.

  • Cathy Chester moderator author
    4 years ago

    Great, Kim! I’m so glad my post was a good reminder for you – as it was for me, too! Ah, sleep. We need it and we need to find what works for us to get it.

    Best to you always~
    Cathy

  • 4 years ago

    Thanks so much for this. I’m a sleep health educator and lab tech but I also have MS. I find that about a quarter of the posts in MS forums point to sleep issues. Most people blame their MS and don’t do anything about it. What they don’t realize is that they can have MS and ANY NUMBER of OTHER health conditions, such as OSA or Restless Legs, and these can wreak havoc on the body. It is best to isolate all symptoms to confirm which really ARE the MS and which are something else entirely. Then you can treat them appropriately and the outcome is going to be a much more positive one, in the long run.

  • Cathy Chester moderator author
    4 years ago

    CraterBrain,

    Thank you for sharing your knowledge with us about sleep health. We need professionals like you who better understand the issues at stake, that we should isolate them to understand why they are happening to us, and then learn better ways to address getting better sleep.

    Cathy

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