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Does your specialist ask about your sleep health?

Some interesting findings from recent research published in International Journal of MS Care (IBMSC) suggests that we might need to be more forthcoming about our sleep problems when we go to see the doctor.

Assessment And Treatment Of Psychiatric Distress, Sexual Dysfunction, Sleep Disturbances, And Pain In Multiple Sclerosis – A Survey Of Members Of The Consortium Of Multiple Sclerosis Centers,” released in November-December 2016, takes a close look at symptoms and side effects which aren’t typically top of mind for MS specialists.

For good reason, concerns about gait, memory, neural sensation, speech pathology, and critical functions ( swallowing, continence) are focal points any specialist prioritizes in their encounter with an MS patient.

However, disordered sleep and ongoing daytime fatigue are frequent lamentations for people with multiple sclerosis, made clear by a visit to any MS forum at any given time. Who among us are doing anything about these problems?

Not all MS patients are screened for sleep or fatigue

The study sought to highlight what should be considered “imperative” screening assessments among all MS specialists so that improvements can be made in the way patients are informed and cared for.

Poor sleep is a common problem that’s often overlooked, despite the fact we know there can be multiple explanations that point to MS as a root cause: a misfiring nervous system can lead to fragmented sleep, for instance, and excessive daytime sleepiness can result from nerve damage to the area of the brain which facilitates sleep-wake rhythms.

The IJMSC study found that 80 percent of caregivers surveyed routinely ask about their patients’ sleep problems, which is encouraging because it suggests that sleep health is at least on the radar for the majority of caregivers.

But what about the other 20 percent? In this survey of 42 MS specialists, eight of them are not asking about sleep concerns at all.

If you consider just how many patients each of these specialists treats, that means a lot of patients suffering silently with sleep problems—problems which can be treated—are likely not getting the care they need.

Why does sleep health matter for someone with MS?

Sleep disturbance has a distinct negative impact on many aspects of daily living.

Poor sleep can be blamed for mood swings, cognitive deficits, memory decline, poor motor skill performance, and the amplification of pain, even in healthy people. For people with MS, it can mean literally being unable to get out of bed, keep a job, manage relationships, or function independently.

Untreated sleep disorders (specifically, sleep apnea) can also lead to hypertension, diabetes, stroke, mood disorders, cardiovascular disease, eye problems, an increase in accidents at home or while driving, and many other dangerous outcomes.

Sleep and MS: Statistics from the IJMSC study

  • Women with MS have more sleep problems than those people who are chronically ill from a different diagnosis, or when compared with the general population.
  • More than half of people diagnosed with MS report the following sleep disorders: restless leg syndrome, insomnia, obstructive sleep apnea.
  • All untreated sleep disorders, regardless the cause, contribute significantly to daytime fatigue.

Also, the way in which the surveyed caregivers responded to their patients’ sleep assessments, when they did perform them, varied quite a bit.

Those patients who were assessed for sleep problems were most often referred to a sleep specialist to identify and treat any separate underlying disorders.

  • This is good news: the best way to understand a sleep problem is to get a sleep test (if it’s called for), and sleep specialists are the only ones who have protocols to do this.

However, about half of the caregivers in the study reported that their initial approach to treating sleep problems was to prescribe a medication like zolpidem (Ambien) or melatonin to address insomnia.

  • This is not great news, considering the adverse affects that prescription hypnotics pose for even for those with healthy brain function, such as daytime drowsiness, dizziness, loss of coordination, muscle pain, and feeling “drugged” the morning after.

Also, only about one-fourth of caregivers referred their sleep-disturbed MS patients to a health psychologist for potential treatment of insomnia by way of cognitive behavioral therapy (CBT-i).

  • This is truly lamentable, as CBT-i has recently been heralded by the sleep medicine community as the most effective means for overcoming insomnia. CBT-i has also been shown to empower MS patients to improve their sleep hygiene, learn techniques for relaxation, and practice stimulus control in ways that can effectively eliminate insomnia and related sleep disruptions.

Why aren’t more patients being offered a non-drug option for treating their insomnia? One can only speculate, but the study offered this legitimate explanation: there are currently not enough CBT-i practitioners available to treat the overwhelmingly high number of insomnia patients.

At any rate, historically speaking, the treatment of chronic sleeplessness has long fallen into the realm of pharmacology; doctors are just used to writing orders for Ambien. We can hope that the recent surge of evidence promoting CBT-i coming out of sleep medicine research will eventually lead to a change in protocols that honor the more patient-centered efforts of 21st century healthcare.

It’s worth noting that certain limitations were found in the study regarding the instruments used to assess patients for poor sleep. In one questionnaire about fatigue used in the study—the Modified Fatigue Impact Scale—no questions about sleep duration or initiation are included, though these simple inquiries are critical for identifying underlying sleep dysfunction.

What MS patients can do if they have poor sleep

As patients, we often have more rights and options than we are led to believe.

We can ask for sleep studies if we feel we might benefit from them; there are protocols for determining who should have them (as they can be expensive), so there’s no reason not to see if you are a good candidate for such a test.

Sleep apnea (both obstructive and central) requires testing but it is treated successfully with proven nonpharmaceutical solutions that truly enhance one’s quality of life.

Restless legs syndrome is often treated with medication, but new medical devices have shown to be effective as well.

And insomnia may, in fact, be the secondary effect of either of these sleep disorders, as well as a potential result of circadian rhythm disorders, which could occur as a result of having MS, too. An astute sleep specialist can help identify and treat this special area of sleep problems.

As for daytime sleepiness, treatment of underlying sleep disorders usually improves excessive daytime fatigue, if it doesn’t eliminate it altogether.

Conclusions to draw

The study points to two areas for medical professionals to focus on:

  • The improvement and use of validated screening measures by more MS caregivers to identify and treat sleep disorders in their patients more effectively, and
  • More research tto confirm the validity of non-drug therapies to treat insomnia as well as highlight the greater risks involved in using hypnotics to treat sleep problems in MSers.
  • Melatonin also needs to be examined more closely to determine its effectiveness and appropriate dosage. (I would also like to see more studies on melatonin’s chronotherapeutic benefit, as timing of its use has already been scientifically shown to impact those who are using this substance as part of a cancer treatment regimen.)

The patient-doctor relationship is a two-way street

Another unspoken, but relevant, conclusion that I, as a person with MS, take away from the study is this:

As MS patients, we should not wait to be asked about our symptoms.

We should consider keeping a symptom journal and bringing it with us to every visit with our MS specialist. If problems with sleep (or the other concerns, such as pain, sexual drive, or mood) are having a serious impact on quality of life, we absolutely must inquire into them. Without hesitation.

I know this can be difficult to do. We already feel like hypochondriacs when we go to the doctor, but this “snowflake” disease is (or should be) understood well enough by our MS caregivers that they should not be discounting any information we offer them.

At any rate, as a sleep health educator, I can confirm that sleep health itself is hard for people to acknowledge and prioritize. Long-held cultural attitudes about sleep health as well as old-school attitudes within the medical establishment bear this out.

But make no mistake: Adequate sleep is not optional. As part of the three pillars of good health, sleep should hold equal footing with adequate nutrition and adequate exercise. Sleep health concerns should always be respected in any discussion between a patient and a doctor.

Don’t wait for your doctor to bring it up. After all, you might have one of the 20 percent of all physicians who doesn’t assess for sleep problems. Bring these problems up yourself, and ask for solutions. It’s not only your right, but such an investigation could truly improve your experience living with MS by eliminating unnecessary symptoms as well as treating dangerous hidden health problems caused by poor sleep.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • itasara
    3 years ago

    Having found more mistakes my comment let me just add that I wish there were a way to edit replies because even though I think I put them in right & I try to check them they don’t always end up being way I’d like them to be. I dictate my responses so that’s part of the problem but it makes it easier for me as well. So I’d like to add more to what I wrote improperly: My MS is doing well. So I stay with him but he is not what I would call the chatty fuzzy warm type of person. Although he sees MS patients, i’m not sure I would call him an MS specialist. The other hand we are kind of on the same page as far as how I am doing. I only see him once every year or now every year and a half unless I need to call him.

  • itasara
    3 years ago

    I know I will never ask me about sleep or a half a dozen other things. I’ve been with him for 11 years now and although I’ve thought about switching I also don’t have a great reason not to. I am message me doing well . He’s just snapped chattyme warm fuzzy type. This article mentions possibility of taking medications like Ambien. I would like to say that Ambien is the worst medication anyone should take because it’s very addictive. It’s very difficult to get off of it once you are addicted. It doesn’t take long to get addicted. I don’t feel it should be on the market at all. If you don’t believe me just read about comments on the Internet of people who have taken Ambien and tried to get off it. My husband was on it and you had to taper down over a long period of time. The only thing is it’s the best sleep he ever had and he does have a problem with staying asleep every night. I have terrible sleeping habits and I am the one who has MS. But I’ve always been a night bird type person and I do my best sleeping in the morning. But when I have to get up appointment that I have to go to it becomes a little difficult at times. I try to arrange things as much as possible around afternoons instead of mornings.

  • TK Sellman moderator author
    3 years ago

    Hi itasara

    Thanks for your comments!

    I’m sorry to hear that you neurologist isn’t particularly attentive to certain details of your health, including sleep. You’re not alone, but at least you are doing well with your MS.

    A lot of MDs aren’t the “chatty” type these days due to major pressure by insurance/Medicare to see more patients in less time.

    Still, if you have sleep problems, that should be something to bring up, at least with your primary care physician, who can give you a simple questionnaire to help determine the need for further examination. A neurologist who is paying attention should also provide the referrals you need should you screen for sleep disorder risk factors. Even a dentist can give you referrals for sleep testing, as more and more are trained to screen for and identify sleep breathing disorders like apnea.

    You mention you are a night bird. You might just be “wired” for a later sleep phase than most. Sometimes people go to bed at a normal time (say, 10pm) and lay there for 2 hours thinking they have insomnia, when really, they are just wired to go to bed at midnight. When they just stay up and go to bed when they are tired (midnight), and are allowed to get a full night’s rest (7-9 hours), they do just fine. That’s not really a sleep disorder as much as it is a problem when it comes to working a 9 to 5 job. I’m definitely geared to a later phase myself, but I don’t have to commute to a job in the morning (my commute is down the stairs to my office!), so I still manage to get my sleep, just not on the earlybird schedule 😉 And that’s okay. There is no right or wrong sleep schedule if it works for you.

    As for Ambien, I am not fond of it myself and would always hope that people exhaust all of their possibilities before starting on a course of Ambien.

    Part of the problem: Ambien is only meant to be used occasionally, and not long term. Once a week is not going to lead to habituation. Every night will. Many people use Ambien nightly without realizing their addiction risk (or maybe they don’t care?).

    That said, some people do very well with Ambien when it’s used correctly. It’s like antidepressants… controversial because of overuse, but lifesaving when used correctly. (For instance, I’ve been using Prozac for over 15 years and it really has saved my life.)

    Then I’ve also seen people in the sleep lab who don’t respond to Ambien at all.

    I feel like it is overprescribed because it is an easy temporary fix, and many doctors traditionally never think to dig deeper into the root causes of their patients’ sleep problems.

    Also, it seems that patients are not always counseled on how to use it properly and end up with dependency. It certainly has its share of dangerous side effects (including parasomnias and drowsy driving). Even when patients needed it in the lab to sleep for a study, I worried about them driving home the next morning.

    Thanks for your comments and I hope you continue to do well with your MS! –Tamara

  • itasara
    3 years ago

    I wish there were a way to edit my reply. But the first sentence should say, my Neuro never asks me about my sleep habits.

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