MS Fatigue – or a Sleep Disorder?

I am very tired as I write this blog entry. I would love to take a nap, but I’ve got lots of work to do. This is not unusual for me; why do you think I drink so much coffee?

I have written before about the difference between garden-variety tiredness caused by lack of sleep and the intense fatigue many people with multiple sclerosis suffer. Of course, a person with chronic fatigue can also experience regular tiredness, especially when we’ve been burning the candle at both ends.

But a recent study adds a new wrinkle to the fatigue/tiredness situation. The study, published in the Journal of Clinical Sleep Medicine, found that of about 900 people with MS who were surveyed by mail, more than a third suffered from obstructive sleep apnea; about a third suffered moderate to severe insomnia; and just over a third had restless legs syndrome. Yet only small percentages reported having been diagnosed with those conditions by a healthcare provider.

That disparity caused the researchers to speculate that some people with MS who suffer daytime fatigue may in fact be suffering from a fundamental and chronic lack of sleep tied to one or more of those sleep disorders.

What are the takeaway messages for people with MS? Well, first, and most obvious, those of us who do feel tired all the time should check with a doctor and get evaluated for sleep disorders – and get ourselves treated, if need be.

Second, the study serves as a reminder that with MS, many things aren’t what they seem to be, so we have to be on our toes all the time, alert to what’s going on in our bodies and prepared to explore what those things may mean.

Now, if you’ll excuse me, I’m going to go take a nap…..

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Jennifer

Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

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    22 Comments

  • Marilyn1  Nov 14, 2014 10:50 AM
    I suffer severely from fatigue. Its rarely nap tired. But the other day I was feeling nausious w\ headache. My daughter asked if I might be dehydrated. I drank water and took a nap. 45 min later I felt so much better. We must remember to hydrate. As much as I love coffee, it is diraretic. Sipping water with it not only rehydrates,but also prevents staining on teeth. I got that tip from my dentist. Being hydrated does help with chronic fatigue.
  • Matthew Barrett   Nov 14, 2014 11:10 AM
    I don't feel bad all the time. But some days even getting dressed is an issue.
  • Stephanie   Nov 14, 2014 11:18 AM
    I have sleep apnea. when I don't wear my mask at night, I pay for it the next day so tired, dragging around, and for sure a nap, sometimes taking that nap at 11am
  • Lisa   Nov 14, 2014 11:38 AM
    My previous general neurologist Dx me with restless leg syndrome. But my current neurologist, an MS specialist, believes that it isn't RLS at all, but cramps/spasms as a result of MS.
  • storyteller45  Nov 14, 2014 11:59 AM
    I have been experiencing sleep issues for the last several years. I blamed it on lower back issues. Then menopause. When HRT did not help I discussed w my neuro. Now trying muscle relaxers for spasticity issues. Fingers crossed..... I'm tired of being tired...
  • Marti   Nov 14, 2014 12:24 PM
    Thanks for the blog.Always good to be reminded of the information at hand.
  • Anybeth   Nov 14, 2014 12:48 PM
    Ooo, who else here lacks a sleep cycle? Neuro has told me that if I sleep a lot (and uncontrollably) again, to call the office. It's bad when you literally aren't awake enough to take care of basic personal needs.
    Usually it's just that I can never tell when my brain will get me to sleep or for how long. Controlling light helps, but only mildly. (It's the right season: try some red christmas lights for your evening lightsource or as an addition to it.) Sleeping pills help, when I must be up a certain time. Provigil, oddly enough, helps little with the sleeping issues, though that's more what it was designed for. I have my doubts my sleeping issues can be helped any more than my thermoregulation.

    I don't have RLS, but what the neuro calls "paroxysms of MS". Without medicine, I'd have times that I suddenly become extremely tired and dizzy (enough to make me stop what I'm doing and be still and seated), have very strong jerks (like one might have going to sleep, but more), and then not be able to move for several minutes (like sleep paralysis). Why do I keep comparing these things to sleep? Because according to my EEG (and to the bafflement of the tech), though I remain aware during these times, my brainwaves are suddenly (and then suddenly not) those of one deeply asleep. The rest of it is pretty much my brain freaking out because such a thing isn't meant to happen. Back before this was treated, it was exceptionally hard for me to get to sleep because, though these things could appear any time I was the least bit drowsy, they were more common the sleepier I was. I'd keep jerking as I tried to go to sleep and even sleep wouldn't necessarily stop it. (Might have been PLMD but for the bouts out of nowhere.) Even though I was aware, the sudden snatches of "deep sleep" were very restorative, so they themselves screwed up my sleep. A lot of sleep weirdness that fortunately has responded to treatment pretty dang well. But I have to be careful not to take anything that lowers the seizure threshold because, though they aren't seizures, it effects this particular brain reactivity as well.
    I guess I figure, given all that, I'm lucky just to have really screwy sleep.
  • cheryl   Nov 14, 2014 4:41 PM
    My daytime sleepiness got sooo bad I almost lost my job. I am now on
    Ritalin and while I still have episodes of daytime somulence, I am considerably better, and can now stay awake and vibrant for most of the day.
  • Tom Biel   Nov 14, 2014 4:47 PM
    I have MS and sleep apnea I'm not sure which one came first.
    Tom
  • kariisa33  Nov 14, 2014 4:59 PM
    I was sleeping 16 to 18 hours at a time on the weekends and as much as possible during the weeks. I am newly diagnosed and still struggling with the medication and might have to change but my dr put me on Provigil last week. That seemed to help at first but towards the end of this week I am done by 11am and can't do anything about it because I have to work. I am considering a nap right now myself
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    SmartyPants  Nov 14, 2014 9:57 PM
    I hear you, i fight the fatigue with exercise, i use my recumbent bike and ride five miles twice a day and never miss, the exercise gives me energy and it also makes me tired at night, so i don't have problems with insomnia anymore. I swim some days but the bike is in my living room, i do it first thing in am a half hour then another half hour doing on bed exercises, some weights, and finish with yoga. It really makes a big difference in my energy levels. Good luck gal
  • Gloria Harris   Nov 14, 2014 10:57 PM
    I was Diagnosed in 1997, Jennifer,answered a lot of questions I had been asking myself,in a way it was a relief to know I was not imagining all these strange events going on in my body.
  • Gloria Harris   Nov 14, 2014 10:57 PM
    I was Diagnosed in 1997, Jennifer,answered a lot of questions I had been asking myself,in a way it was a relief to know I was not imagining all these strange events going on in my body.
  • Kieren   Nov 14, 2014 11:05 PM
    I have MS and I was diagnosed with OSA a year later. I have used a CPAP machine but only recently it was discovered that I needed an APAP because the pressure I need fluctuates so much CPAP is not effective. And sleep apnea also causes pain...so if this new machine works...I might be able to tell how much my fatigue is due to sleep problems!!
  • Sandy   Nov 16, 2014 5:48 PM
    I've been diagnosed since 1985. I thought the exhaustion was the MS. Then I was diagnosed with sleep apnea. With my c-pap I am doing better. Just need to prioritize... that helps.
  • Jenn   Nov 18, 2014 7:50 AM
    I was diagnosed with MS about two weeks ago ( actually I'm still undergoing tests to determine for sure). Everything seems overwhelming right now. I woke up one day with numb legs and hands and days later get diagnosed with MS. I am a 36 year old mother of 4, with my youngest being 1. I have so many questions that I feel aren't being answered. Doctors say MS is different for everyone and they can't give specific answers. Maybe you can help? When, if ever, will I regain feeling in my legs and hands? What meds work? I've just started the whole30 diet? Does anyone have feedback on diets? Thanks!
  • lynette   Nov 20, 2014 7:46 PM
    I feel tired all the time and I even take ritalin and an over-the-counter wake up pill
  • Feather   Nov 21, 2014 4:00 PM
    Thank you for sharing.
  • Chandra Morris   Nov 26, 2014 2:39 PM
    I have suffered from fatigue from the beginning. First being told it was because I was a new mother then because I was a mother of 2. Was put on antidepressants because fatigue is a sign of depression. Just recently it has gotten a lot worse. Finally saw a sleep specialist. She dx me with idiopathic hypo somnia. Which basically means I can't ever get enough sleep. I am always tired after naps after a good night sleep even after sleeping 24 hours. I am currently taking 2 different meds to help but that's all it does is help. I wish I could just wake up feeling rested.
  • kalee97  Dec 15, 2014 3:30 PM
    I so can reate to this tiredness. I never leaves. On the last day that I worked I was working on a holiday weekend, showed up to help with the installation of a new computer system after spending the first three hours of the day hooked up to IV steroids for which I was only o the third day of a five day dose. i had the IV line still hooked into my arm because they feared taking it out because I was such a hard stick and I was suddenly tired and told my boss that I needed to go home. His response was we are all tired Karen. My response was to leave and never go back. I spent the net year at home trying to decide whether I would be returning or not. It was an option and I decided that I could not mentally do this to myself. Had my boss been more supportive I would have gone back but it was not a reality for me. I decided to focus on my health and my family and have done so since Labor Day 1999 but not without regrets and bouts of depression. this is my story.
  • Avatar
    vals89  Dec 18, 2014 12:24 PM
    Any suggestions or tricks to manage this fatigue. I am really desperate because I am a medical student, and its getting harder everytime to keep up with my peers.
  • Avatar
    Karen  Dec 26, 2014 6:30 PM
    I too suffer with sleep issues. My husband and I have learned that after I take my morning meds I have to take a nap. We make no appointment or other obligations until after nap time. My nap can be from 45 minutes until an hour 1 1/12 hours. Thankfully I'm on disability and my husband is retired and knows me very well. It might be helpful to keep a "diary or journal". You might be able to determine things that trigger your fatigue/sleep. Then you can make adjustments to keep your body. I hope this helps.