MS, fatigue and sleep disorders: putting the matter to bed

Fatigue is perhaps the most prevalent and disabling symptom experienced by persons affected by MS.  An overpowering feeling of fatigue can severely affect daily functioning and, particularly when compounded by other symptoms of MS, impairs performance at work or school and affects one’s interactions with friends and family. While the cause of fatigue in MS is still unknown, one hypothesis that is gaining ground among scientists and clinicians alike is that underlying sleep disorders may play a larger role than previously thought. Promising data out there suggests that identifying and treating sleep disorders can go a long way towards alleviating fatigue and improving quality of life in people with MS. This is good news, since fatigue is generally resistant to the frontline treatments that are the mainstay of MS symptom management.  In this post, I’ll talk about some of the most common sleep disorders identified in people living with MS, discuss the evidence linking sleep disorders with fatigue, and identify potential strategies that people with MS can pursue to manage fatigue.

insomnia

(photo credit: “Insomnia” by Alyssa L. Miller / CC BY 2.0)

Some common sleep disorders

Disorders affecting sleep and waking are numerous and complex; however, one feature they almost invariably share in common is a reduction in sleep quality at night along with an increase in sleepiness during the day. Here are some of the most common sleep disorders, found both in people with MS and among the general population.

Insomnia: Certainly the most widespread and well-known sleep disorder, insomnia is defined as difficulty in falling asleep or staying asleep, despite adequate opportunity. According to the Canadian Community Health Survey from 2002, more than 3 million Canadians, or 10-15% of the population, experience insomnia. Among people with MS, that proportion is believed to be higher, with some estimates of prevalence exceeding 30%. Whether MS is part of the cause of insomnia, or if it exists as a separate condition in people with MS, remains unclear. Treatment strategies for insomnia can include a combination of discussing lifestyle changes to improve sleep hygiene and, if necessary, pharmacological intervention.

Obstructive sleep apnea hypopnea (OSAH) syndrome: A sleep-related breathing disorder, OSAH syndrome is characterized by interruptions in breathing that occur during the night as a result of a collapse of the upper airway. Each interruption can persist for up to 30 seconds, until the brain detects reduced oxygen levels in the blood and triggers a brief awakening to restore normal breathing. Although someone with OSAH can experience hundreds of these breathing interruptions and arousals in a night, they often don’t realize their sleep has been fragmented, despite feeling sleepy and fatigued during the day. In addition to causing poor quality sleep, OSAH has been linked with other serious illnesses, such as heart disease and diabetes. OSAH affects an estimated 3% of Canadians, and recent data reveals that an estimated 58% of people with MS are affected with this condition. Dr. Daria Trojan and colleagues at the Montreal Neurological Institute demonstrated in an MS Society-funded study that OSAH is the most frequent sleep disorder found in people with MS, and went on to show that treating OSAH in those people may lead to improved fatigue. I talk about this in more detail further along in the post.

Restless legs syndrome (RLS): People with RLS report uncomfortable and unpleasant sensations in the legs that occur primarily at night, resulting in an uncontrollable urge to move their legs in order to relieve the discomfort. RLS is often accompanied by a condition called periodic limb movements of sleep (PLMS), in which people experience severe and involuntarily jerking of the limbs during sleep, causing sleep fragmentation and daytime sleepiness. Like many other sleep disorders, RLS appears to be significantly more common in people living with MS compared to the general population, and the associated sensory and motor impairments  – including involuntary limb movements during sleep and feelings of “insects crawling up the legs” during waking – can seriously aggravate other MS symptoms.

Narcolepsy: Narcolepsy is a disorder distinguished by instability in the sleep-wake cycle. The symptoms of narcolepsy are several-fold, the most common of which is excessive daytime sleepiness. However, one of the most striking features is a symptom called cataplexy, in which positive emotions, such as laughter, can bring about a sudden bout of muscle weakness and loss of voluntary muscle control. You may have heard the expression that laughter can make you feel “weak in the knees”; now imagine that weakness magnified to the point of physical collapse! Narcolepsy is believed to be caused by the loss of a certain molecule which promotes waking – called hypocretin – in the brain. Considerable evidence suggests that an autoimmune response may be the culprit for this loss of hypocretin (although this issue is still a matter of debate). Thus since MS, and to a lesser extent narcolepsy, are considered autoimmune disorders, understanding the disease mechanisms that underlie narcolepsy may shed light on potential therapies for MS.

Sleep disorders: at the root of fatigue in MS?

There is an increasing awareness among the scientific community that sleep disorders may be a vital contributing factor to the debilitating fatigue experienced by individuals with MS. This is important because many tried-and-tested strategies for managing sleep disorders in the clinician’s toolkit can potentially allow people with MS to feel less tired and more refreshed and alert, leading to improved daily functioning. We’ll take a look at a few studies that have offered crucial insights into the links between MS, fatigue and sleep disorders.

A landmark study by a team at McGill University, published in Multiple Sclerosis Journal in 2012 and funded in part by the MS Society, demonstrated for the first time that measures of fatigue were significantly improved in people with MS whose sleep disorders were successfully treated, compared to those whose sleep disorders went untreated or who did not present with any sleep disorders. The most remarkable improvement was seen in patients with OSAH, presumably because OSAH was the most common sleep disorder among the participants and had one of the strongest associations with severe fatigue. These findings were confirmed by a German research group, whose article published last year in Clinical Neurology and Neurosurgery also showed that clinical treatment of such sleep disturbances as insomnia, OSAH and RLS may improve fatigue in MS.

A more recent study that came out of University of California Davis and was published in the Journal of Clinical Sleep Medicine last month was perhaps the largest single investigation of sleep disorders in people with MS. This survey-based population study of 2,375 individuals diagnosed with MS revealed that a high proportion of respondents screened positive for one or more sleep disorder – including insomnia, OSAH or RLS – yet a vast majority were undiagnosed by their clinicians. This discovery points to an important gap in our recognition of the presence and impact of sleep disorders in people living with MS. It is encouraging to see that important studies such as these have unlocked promising avenues for understanding what factors cause fatigue alongside other MS symptoms, and offer hope to people with MS that there are ways to finally put their fatigue to bed.

What can you do?

I have heard from many people living with MS that fatigue is a common part of their daily lives, which imposes on them serious challenges such as those I mentioned at the beginning of the post. Fortunately, there is hope for managing fatigue in people with MS by tackling potential underlying sleep disorders. If you have MS and feel tired and poorly rested throughout the day, your family doctor can help to find the right treatment plan for you. He or she may refer you to a sleep clinic, where you can participate in a sleep consult and have the opportunity to talk to a specialist about issues you’ve encountered with sleep.

One potential approach is participation in a sleep study, which involves spending the night in the clinic while your brain activity, heart rate, breathing, eye movements and muscle activity are monitored using a technique called polysomnography. This painless technique can uncover a range of sleep disorders that a person may otherwise be completely unaware of (after all, it’s difficult to notice symptoms when you’re asleep and, hence, unconscious!). In contrast, a variety of daytime tests are used to gauge levels of sleepiness and alertness during the day.  These and other tools will provide your sleep specialist(s) with important information for diagnosing and treating any underlying sleep disorders.

sleep clinic Clevemed blog

Typical polysomnography setup in a sleep lab (photo credit: CleveMed Blogs)

Researchers note that identifying the symptoms associated with sleep disorders as soon as possible will increase the likelihood of overcoming fatigue and improving quality of life, while decreasing the risk of developing other potentially serious illnesses that are linked to sleep disorders. As more evidence on this topic surfaces, the research and medical communities will be able to uncover the role sleep disorders play in the onset and severity of fatigue among people with MS, as well as determine if MS is directly linked to the development of sleep disorders. This insight can potentially lead to new treatments that reduce fatigue and enable people living with MS to undertake daily activities and participate fully within the community. Do you or someone you know with MS have problems falling asleep or experience any of the other sleep problems listed above? Let me know in the comments section below!

37 thoughts on “MS, fatigue and sleep disorders: putting the matter to bed

  1. Jillian Challoner

    Fascinating read. My MS diagnosis came about as a result of tests after I complained of fatigue and thought that I possibly had RLS.

    Reply
    1. drkarenlee Post author

      Hi Jillian,

      It’s intriguing to hear from the perspective of someone whose MS diagnosis stemmed from an initial suspicion of a sleep disorder. There isn’t very much information in the medical literature about whether sleep problems tend to emerge before or in tandem with other symptoms of MS, presumably since the interaction between MS and sleep disorders is a relatively new area of study. I will certainly post more information about this topic as new information emerges.

      Dr. K

      Reply
      1. Karen

        Hi Dr. K
        this is interesting in the fact of sleep being the initial symptom. A good 10 years before my diagnosis of MS in 2005, I reported to my doctor of always being tired. it started out in winter once the daylight got shorter in the season, and each year it seems to last longer. My doctor at the time, chucked it up to being seasonal affective disorder and left it at that. Regardless of me telling her that this seasonal affective disorder is a year long thing. It wasn’t until a couple of months after the birth of my daughter when I could not pick her up in the morning as the extra weight my legs would give out. At this point I had a new doctor and after discussing with him my symptoms over the years he started with the blood work. Needless to say all the tests were making him think that I had lupus. It wasn’t until I started have the shocks down my neck that he sent me to a neurologist. Even under clinically they didn’t think I had MS, it was when the MRI came back positive for MS. Fatigue for me is still a really big issue, and it seems to still get worse each year. However I have also noticed that during the summer months, when I’m in the British Columbia region I do not have as much fatigue as I do in the prairies. Actually a lot of my symptoms are less in the mountains that prairies. I really think altitude has something to do with MS. Just my thoughts

        Reply
        1. drkarenlee Post author

          Hi Karen,

          Your observations about how your symptoms change at different altitudes is consistent with the scientific literature. In general, MS appears to be more common at lower altitudes, and occurs less frequently in mountainous regions. Although the reason for this relationship is not certain, one hypothesis is that more intense ultraviolet (UV) light at higher altitudes (where the thinner atmosphere filters less UV light) promotes greater synthesis of vitamin D3 in the skin, which can be a protective environmental factor that decreases the risk of developing MS. Moreover, a study which was conducted in mice that exhibited an MS-like disease demonstrated that exposure to increased UV radiation can reduce the severity of symptoms. The relationship between altitude, the seasons, and symptoms of MS like fatigue is no doubt complex and continues to be an area of study. Thanks for sharing your thoughts!

          Dr. K

          Reply
  2. Judy St. Cyr

    Have had insomnia ever since diagnosis of MS in 1976 (aged 24). Fatigue seems to be my major MS challenge. I have mild or benign MS (confirmed by MRI and various other tests). Part of not being able to sleep include tingling all over my body that is constant, but only noticed really when trying to get to sleep. That has been ongoing for the past 20 years +-. I am now 62. I take Imovane to get to sleep. Sometimes I wake after only a few hours, and sleep in 2 hour intervals throughout the day. Some would be due to MS, some might just be getting older. I do not take, nor have been offered any MS drug treatment, as my neurologist feels that my disease is not severe as evidenced by my history. I tend to also feel more tired during the change of seasons. I experience more dizziness and other nuisance symptoms during those times. Holidays are difficult as just cooking a big family meal will leave my energy depleted enough so that I do not have any left to eat my own dinner. Vacations need extra days of rest in order to enjoy sightseeing.

    Reply
    1. drkarenlee Post author

      Hi Judy,

      Thank you for sharing your story with us. It is true that fatigue is one of the most disabling symptoms of MS; it affects between 75 and 90% of people with MS, and more than half of those individuals identify fatigue as one of their worst symptoms. Evidence from some of the studies I’ve discussed in this post suggests that MS drug treatments may not always be effective in countering fatigue, particularly if that fatigue is caused by one or more underlying sleep disorders. You have certainly been keeping a very detailed record of your sleep problems, and if you haven’t already, I encourage you to share those details with your physician.

      Dr. K

      Reply
  3. Jim

    Yes I have ms too, it doesn’t take long to feel tired after ,,seems like not to long. What keeps me going my family and friends. When I feel better, I said to a friend that we would go for a nice ride. That’s one of the things I AM GOING TO DO.

    Reply
  4. Ana Rawlek

    I had been diagnosed with tentative MS primary progressive, I had a tested positive for sleep apnea, but my doctor asked me to do it again, because when I did it I was taking steroids with adverse side effects. I had a hard time falling sleep at night time and usually wake up during the night at least a couple of times, Fatigue affects my daily life. Thank you Ana Rawlek

    Reply
    1. drkarenlee Post author

      Hi Deb,

      Unlike many other symptoms of MS for which there are highly defined diagnostic criteria, fatigue is a tough one to nail down and can have many different causes, so it’s only relatively recently that it has gained more recognition as a legitimate and serious symptom of MS. Thanks for your comment!

      Dr. K

      Reply
  5. Ian Babcock

    Thanks for making this information available. I don’t really know whether I have MS-related fatigue. I have secondary progressive MS and I do get extremely tired as a result of higher than usual levels of activity the day after that activity. e.g. raking leaves for an hour or two is all I can manage and I feel very tired right after but not necessarily sleepy. But that night I need to sleep and extra couple of hours to feel “normal” the next day. Back-to-back days of high levels of activity are very exhausting. Thanks again.

    Reply
    1. drkarenlee Post author

      Hi Ian,

      You’re absolutely right that there is a subtle and often overlooked distinction between “sleepiness” and “fatigue”; someone who is sleepy may have a tendency to nod off and doze while sitting at their desk at work or in front of the TV, while fatigue can describe an overwhelming feeling of exhaustion and lack of energy, as if you’ve just run a marathon. It doesn’t help that sleepiness and fatigue can often overlap considerably, which makes finding the root of the problem challenging at the best of times. Thank you for sharing your experiences.

      Dr. K

      Reply
    2. Vickie Martin

      Hi Ian. I am the same way. When cleaning I have to do half one day and the rest the next day. Fatigue sucks. Until people experience it, they don’t know what it means. Take care and stay strong

      Reply
  6. Doug Murphy

    Dr Lee;
    I am a male 46yrs old living with relapsing remitting ms I have dad the disease for 17 yrs in the last three of those I was diagnosed with obstructive sleep apnea and have been using a Cpap machine nightly I have worked as a paramedic for as I have had ms however my fatigue has become so that I am off work

    Reply
    1. drkarenlee Post author

      Hi Doug,

      Thank you for sharing your personal experiences with fatigue and how it has affected your ability to work. Coping with fatigue in the workplace can be extremely challenging and fatigue is one of the primary culprits for diminished work capacity in people with MS. Have a look at our info sheet for some tips and resources for managing fatigue in the workplace.

      Dr. K

      Reply
    2. Vickie Martin

      I had to stop working because of fatigue also. I am 57 and it was hard on me because I worked in a hospital pharmacy and I couldn’t keep up the walking pace they required. Even though my work was accurate, I wasn’t fast enough for them. Fatigue is a nasty word! I miss being able to work and getting out.

      Reply
  7. Denise

    I was diagnosed with RRMS in 2007 and changed to secondary progressive by 2012. Fatigue was my worst symptom – I usually couldn’t stand for more than 5 or 10 minutes at a time (I could stay on my feet a little longer if I was moving around). I usually couldn’t sit up for more than a couple of hours at a time, or even for the whole day at my worst – sometimes I couldn’t even hold my head up! I would wake up every couple of hours at least because I stopped breathing so often (even when awake sometimes I would ‘forget’ to breathe). That all changed May 1, 2013 when I got my CCSVI treatment with TVAM in California. Ever since I am virtually symptom free from my MS and I sleep like a baby…and at my last 2 appointment with my neurologist, he has said my MS is now “stable”. Jugular venoplasty with Trans-vascular Autonomic Modulation didn’t just save my life, it gave me back my life!

    Reply
    1. drkarenlee Post author

      Hi Denise,

      Thank you for your comment. The exact cause or causes of fatigue in people with MS are still unknown. Thus, any one person’s method for managing fatigue may not be a method that will work for another person. Thus it is advised that if a person with MS experiences fatigue to consult his or her physician to examine all possible treatment options, as well as discuss the possibility of sleep disorders and whether they may be playing a part.

      In terms of CCSVI, the MS Society is committed to understanding the role CCSVI may play in MS and potential treatment options. A Canadian clinical trial is underway to determine the safety and benefit of venous dilation procedures. You can find more information on the MS Society website.

      Dr. K

      Reply
    2. phyllis asman

      Hi i have ms. I jave had for a few yeats i really dont understand. The types my doc really has never td me some of the letters that mean something i have no idea what they mean i read what others say i then think hmmm i feel that i see that i get that and yes sleep tired when i wake up all day go to sleep tired wake up full back to sleep im trying to learn and to get a ms doc

      Reply
  8. Vickie Martin

    I have a serious problem with sleeping. I can go two-three days without sleep. As an example I’ll share about the last couple of nights. I didn’t go to bed until five a.m and was up in a couple of hours. Last night I was up until about eight a.m this morning and then I was at eleven fifteen a.m. This is how it’s been for several months. I have restless leg syndrome real bad and I get pain in my bones and muscles if I lay on one side too long. I just don’t know what to do.

    Reply
  9. Valerie

    Very insightful article! Sleep disorders should not be taken lightly because they can have such harmful effects on your health. It’s important to consult with an experienced doctor who can help you determine an appropriate treatment plan. Thanks so much for sharing!

    Reply
  10. Justin

    I have been dealing with Insomnia for a good while to the point where there my doctor wants me to take sleep aids only getting between 4 and 5 hours of sleep each night fall asleep close to a hour when i lay down and wake up on and off during the nights since im only 25 yrs old it this common?

    Reply
    1. drkarenlee Post author

      Hi Justin,

      Thank you for sharing your story and for your question. The presence and frequency of sleep issues among people with MS, or anyone for that matter, varies greatly and is dependent on a number of factors. It is definitely something worth mentioning to your physician to see if further testing can be done to determine why you are experiencing a lack of sleep. Research has shown that lack of sleep and sleep disorders can exacerbate illness, so best to have it checked as early on as possible. Hope this helps!

      Dr. K

      Reply
  11. Stacey T

    Hi Dr K.
    I’ve had many sleep studies (day one too) and all my doctors have come up with is idiopathic hypersomnia. I fall into REM sleep too fast. They say it due to my MS. I’ve tried stimulants, ADHD, sleeping, and an anti psychotic (due to one of its holding off REM qualities). I take all kinds of supplements and have routine blood work done every 3 months (CBC, thyroid, liver, kidney etc), everything looks fine. I’ve lost 50 lbs (diet and exercise) Nothing seems to work!!! I’m so tired all the time. Is there any thing I’m (or my doctors) missing? I’m desperate for help!! Please, if you have any info that might help let me know!!
    Thanks,
    Stacey

    Reply
    1. drkarenlee Post author

      Hi Stacey,

      I am saddened to hear about your difficult situation. We offer a number of resources online with information about techniques to help you manage your fatigue and develop good sleeping habits, as well as advice on keeping a sleep/activity diary and discussing your sleep problems with your healthcare team.

      Living Well with MS: Managing Fatigue
      Managing Pain and Sleep Issues in MS

      I hope the information in these booklets will be of use to you, and that your healthcare team will continue to explore all avenues of treatment to help you with your sleep difficulties and fatigue.

      Dr. K

      Reply
  12. Brian House

    Hi Doc Lee, I was diagnosed w/PPMS and MSA and h/o Klinefelter. i have RLS {neurotonin} and severe pain {tramadol & oxycodone} I try to combo up with Benadryl, which I usually take between 4-5pm, but can’t fall to sleep until 2-3am and then I easily get fatigued during the day and I’m confined to my wheelchair. My new neuro doc suggests I go to a pain clinic, to better manage the pain. My choices are kind of limited, as I presently live in the Philippines.

    Brian

    Reply
  13. Val Stewart

    Hi I found this very interesting. I feel I sleep great although my partner says I snore, would snoring fatigue you? Also OSAH sounded very interesting, it might be something to look into. I am so tired just now 🙁

    Val

    Reply
    1. drkarenlee Post author

      Hi Val,

      Thanks for the great question. Snoring and OSAH are two sides of the same coin, and they’re both a result of tissues and muscles in the throat relaxing enough to block the airway. During snoring, the airway is only partially blocked and causes the tissues to vibrate, which creates a sound. In OSAH, the airway is blocked completely for short periods of time. While OSAH almost always leads to loud and frequent snoring, snoring isn’t always indicative of OSAH.

      Snoring can be associated with disrupted sleep and daytime fatigue, especially if the snoring is forceful enough to cause brief arousals from sleep. If you’re concerned about your fatigue for whatever reason, consult with your neurologist, who may refer you to a sleep clinic to help determine the cause of your fatigue.

      Dr. K

      Reply
  14. Wayne Letouze

    On behalf of brother the ms seems to affect brain .more than any part of body .bit of hard work sorry to say .can go days with just power naps which mainly happen during day when darkness starts .will go out walk the streets which I find dangerous for his safe being .tried to keep him in .At night .But .will walk round most days & nights please send any information .

    Reply
  15. Nikki

    I am 52, have had MS for 26 years, though only diagnosed finally 7 years ago. I have found that living in the tropics is best for me. I have never had a relapse while living in Africa, near the equator. In NY and NJ i always relapse. I also suffer from sleeping issues. I take 2.5 mg Valium or Zanax to sleep. It helps a lot and i am def less tired when i get a good night’s sleep.

    Reply
  16. Jennifer Kasper

    I am a 40 year old female that had MS diagnosed when I was 24, but have known since around 19. I have a husband of 21 years. A 20,16 &9 year old katelynd logan and Jersey. My husband name is kevin. I hate this disease. I am up right now even though I know I have to be up at 4 am, in about 90 minutes. I have been on disability since I was 34. I just couldn’t do it anymore.the worst thing I hate is that my kids have to see me go through it. However…I am thankful to my Lord and savior that I can walk and talk good for most of the time.. the worse thing i have is loss of vision in my left eye.have a good night. If your awake and bored, I’m here.

    Reply
  17. Jennifer Kasper

    And my husband is the best. He not no only raises our kids, but he also raised my sister’s kids. I wish I had the fund to do something nice for him,sense he does EVERYTHING….when I was first diagnosed, I told him to leave because I was so young and he was too that I didn’t need to ruin his life. He said for sickness and in health. There are all night that we have a pity party and cry for ourselced. But it breaks my heart to watch my husband or kids cry
    .

    Reply

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