Does your specialist ask about your sleep health?
Last updated: May 2018
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.
What does advocacy mean to you as someone living with multiple sclerosis? Please select all that apply: