Should we reclassify MS as a sleep disorder?

Barts-MS rose-tinted-odometer: ★★ (Dark blue sleepy Friday #00008B)

The study below is another demonstration of how MS affects sleep.  Sleepiness, abnormal sleep timing, and poor sleep quality is just the tip of the iceberg. Two-thirds of subjects were in the extreme ranges in at least two sleep domains studied. Worryingly, markers of sleep disruption were associated with more depressive symptoms, fatigue and cognitive function.  

The problem is that most routine MS consultations rarely address sleep and sleep quality. How do you diagnose and manage MS fatigue in pwMS without knowing about sleep hygiene and architecture? Isn’t this an example of why we need to transform the management of MS with routine remote home sleep assessments? 

How many of you have had sleep assessments? 

Whibley et al. A multidimensional approach to sleep health in multiple sclerosis. Mult Scler Relat Disord. 2021 Sep 20;56:103271.

Background: Although sleep disturbances are common among people with Multiple Sclerosis (PwMS), understanding of their impact has been stymied by limitations in approaches to sleep measurement within this population. The aim of this study was to comprehensively phenotype sleep patterns in PwMS through application of an emerging seven-domain framework that includes sleep duration, continuity, timing, quality, rhythmicity, regularity, and sleepiness.

Methods: Sleep domains were estimated from wrist-worn accelerometry, Epworth Sleepiness Scale and Pittsburgh Sleep Quality Index responses. Extreme sleep values within each domain were constructed using previously published guidelines. A composite score of extreme values was calculated for each participant. Associations between sleep domains and severity of MS symptoms were explored (pain, fatigue, depressive symptoms, and cognitive dysfunction).

Results: Among n = 49 participants, median total sleep time was 456.3 min. Median time spent awake after sleep onset was 37 min. Sleepiness, abnormal sleep timing, and poor sleep quality affected 33%, 35%, and 45% of participants, respectively. Seventy-six percent had ≥2 sleep domains in extreme ranges. PwMS had longer sleep duration and decreased sleep regularity compared to a non-MS historical cohort of older men. Greater daytime sleepiness, poorer sleep quality, and higher composite sleep health score were associated with more depressive symptoms, and lower sleep rhythmicity was associated with higher fatigue. Associations were observed between measures of cognitive function and sleep fragmentation, duration, quality, rhythmicity, and composite score.

Conclusion: Application of a seven-domain sleep health framework that captures the dynamic and multifaceted aspects of sleep is feasible in PwMS, and offers potential for an improved understanding of the scope and impact of sleep disturbances in PwMS.

Conflicts of Interest

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General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of the Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust and are not meant to be interpreted as personal clinical advice. 

26 thoughts on “Should we reclassify MS as a sleep disorder?”

  1. This.

    Sleep studies should be routine at the diagnostic level.

    Sleep clinics should be more aware of neurological affects of sleep fragmentation.

    My brain woke me every time I hit REM due to severe REM apnea. I woke at a pulse ox level just above the cut off. Also thyroid related sleep issues (normal TSH, but once that changed, historical sleep issues resolved.)

    I also had central sleep apnea.

    I declined substantially until sleep was managed.

    Thank you for bringing this to our medical community’s attention. Like so many other things, fatigue is assumed to be ms related and yet root causes can be addressed.

      1. We have sleep study clinics, although I now see a sleep neurologist. It’s easier to get help if lungs are bad. I don’t get government help with the correct equipment because it’s neurological. (Canada)

    1. I suspect they’d like to do more sleep studies but sleep clinics took a hit during the pandemic and they’re still working through the backlog of cases for primary sleep disorders.
      In addition sleep services are very poorly resourced; I doubt if any CCG even knows how much it puts into sleep services and treatment. This needs to be greatly improved so that people with secondary sleep disorders such as MS and Parkinsons can access the services and get the right treatment too. We also need more sleep consultants and physiologists and I cant see that changing quickly either.

      1. Very true. It’s extremely difficult to get help with neuro sleep issues vs pulmonary sleep issues or obvious severe obstructive apnea.

  2. Never even been asked about sleep, never mind the offer of an assessment (at a major neurology centre in the north of England). There is a real dearth of commitment to a holistic approach to the management of MS, in my experience. It’s another casualty of poor resources and overworked health professionals. The NHS will save you if you’re dying (mostly), but managing chronic conditions is increasingly not something it’s good at.

  3. Hi could you please expand on how my sleep patterns could be monitored and then hopefully improved?
    I am a very very light sleeper and sleep in no more than 2 hour segments. I have difficulty moving myself so when awake I then interrupt my partners’ sleep which he is Finding exhausting.
    I have read about sleep apnea many times and considered asking to be referred but is there something I can specifically request? More quality sleep would change our lives. With more energy I could exercise more or and with more energy my partner will better equipped at doing everything he has to do.
    This article has given me some hope

    1. A quick and easy (although not medical) way to check is a Fitbit (charge 4 and up, Inspire or other). There are basic sleep stats and as well a rough SpO2 (relative) monitor.
      It’s not perfect – for example “no deep sleep” may actually mean limb movement. But practically, if I sleep a long night and wake up unable to get up, I can predict what my sleep phases will look like.
      The oxygen sat is relative and shows any changes from your normal blood oxygen levels. I use a BiPap but have played with breathing and it definitely picks up changes.
      Again NONE of this is medical, however it would be a reasonable first pass. Assuming it’s as difficult for you to get an actual referral to a sleep clinic as it was in my case.

  4. Sleep study. Wassat? Never been asked. I usually sleep well, but timing’s really erratic. Perfect sleep hygiene is pretty unusual in normal people, i.e., 8 hrs uninterrupted sleep starting the same time every night. Nocturnal visits to the bathroom for most people I suppose.
    Only trouble is the comparator cohort was older men and many pwMS are younger women, so a control using the same demographic might have been more revealing.

  5. Are there any consumer sleep tracking devices that actually work? For damn sure, my garmin watch creates absolute nonsense…

    1. My Fitbit Charge 3 does a decent job. The relative SPO2 levels are fairly accurate. (I’ve tested it out). It’s not medically accurate, but absolutely would point out if desat was an area of potential concern.
      Their sleep stages are also decent. Lack of deep sleep doesn’t necessarily mean no deep sleep stages / it could mean limb movement during deep sleep. Either way sleep is disrupted, and that affects function the next day.
      In the absence of proper testing, it’s one thing to try.

  6. Brilliant. Prof G and the team!!

    Something that massively effects people’s quality of life and most probably disease progression.

    I struggle to get to sleep personally but always wake up tired.

    Never been asked for an assessment, to be fair I’ve had a rubbish service so far. Hopefully things will change.

    I wonder of the melatonin trial will find much out. I think it will but we will see

  7. I would have no idea if I have a sleep disorder or not. Those of us with MS normalize many abnormal things because they slowly creep up on us and so it becomes normal to us. Likely that in the first instance without formal assessment many of us would say they have no problem with sleep. So suspect that a formal assessment wouldn’t happen based on this. Maybe formal sleep assessments should be the norm

  8. 100% agree. As my MS progresses so does my ability to sleep, which in turn makes my MS symptoms worse, it is a vicious cycle. I have not woken up “refreshed” in over a decade. I have just come to accept it.

    Several of the comments above seem to indicate sleep apnea as a problem, which for me improved greatly once I had my deviated septum fixed. Something to think about.

    My issue is getting asleep and also waking up in extreme pain due to muscle cramps and spasms. At night, I am in so much pain I can not get to sleep, the fatigue of the day starts to hurt, muscles cramps, muscle twitching, joint pain, nerve pain, skin sensitivity, brain on fire, etc. Pain meds, gabapentin, and baclofen help, but only a little. Botox did not work that great. Vitamins, diet, exercise, and water, provided no measurable benefit. Honestly, “holistic herbs” tend to help the best 😉

    Most days I am woken up by extreme muscle cramps in my legs that last 10-20 minutes straight. Pain is excruciating. Fun times!

    1. Tommy boy, I found taking tablet of calcium 333mg magnesium 133mg zinc 5 mg x 3 when it happens helps reduce severity of spasms in my legs feet and hands.

      1. Thanks for the suggestion Suebee. I will have to add zinc to my growing mountain of daily pills. Too bad MD1 has been pandemic hoarding all the zinc, so it has been hard to find.

        Already taking calcium and magnesium. Even tried that Nervine supplement with ALA.

        Sometimes I feel like all the vitamins I take are a waste of money, but I am willing to try anything when my daily pain is constantly around an 8 out of 10.

        One of my more “lovely” MS symptoms is trigeminal neuralgia, which is described as the worst pain known to humanity!!

        P.S. you asked on another post if anyone else has problems with anesthesia….I have had significant issues with general for surgical and local for dental procedures. Isn’t MS “fun”

    2. I have had severe symptoms at night for years. For a long time I was able to treat them with Sativex. For the past year this has only worked poorly. Usual anti-spasiticiy medication didn’t work either, so I suggested considering restless legs. Two neurologists ruled it out. Finally I got Pramipexole and sleep mostly through the night again.

  9. For the sake of ‘knowledge’ it’s proberly good to know and diagnose. But can it be treated? And what are the common treatments?

  10. I was diagnosed with MS in 2006, a few months after being diagnosed with sleep apnoea. I started using a CPAP machine then, and more recently an APAP with automatic pressure adjustment. The APAP had a data link allowing a sleep technician to monitor my breathing. That led to a diagnosis of central sleep apnoea, and I have been using an ASV (adaptive servo-ventilation) machine for about a year.

    The initial adaptive process was a fight between me and the machine until things settled down. I had to sleep on my other side and use only one thin pillow for it to work, and I wonder if PwMS are making a mistake by sleeping on the side that is most comfortable from a MS point of view, but which is the wrong side for good breathing. I now usually sleep on my back, relax my spine, and let the ASV take over.

    I was diagnosed with fused top ribs about thirty years ago (congenital?) and have been clocking up more and more related symptoms ever since that web based research suggests may be something like ankylosing spondylitis. Could this be the underlying cause of both my sleep apnoea and my MS?

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