MS & Insomnia: Current Research

Many people with MS complain of insomnia. Either they can’t fall asleep when they go to bed, or they awaken frequently at night, or they arise far too early (3AM) and struggle to fall asleep again.

Does MS cause insomnia?

These days, insomnia is a complaint shared (literally) by millions, with or without MS. Before chalking up your sleeplessness to an MS flare up, consider that there are many reasons why someone might have insomnia.

Some of these reasons come from sources we can’t always control (external), while others are unique to us as individuals (internal).

Causes (or triggers) of insomnia with external origins

• Anxiety about politics, economics, or social concerns (such as racism, misogyny or homophobia)
• Environmental disruptors (light pollution, noise pollution, air pollution)
• Social media overload
• Workplace demands
• Academic demands
• Family demands (childcare, senior care)

Causes (or triggers) of insomnia with internal origins

• Medications
• Poor sleep hygiene
• Mental health problems
• Physical health problems

If you’re someone with MS, is it useful and accurate to add your condition to the pile of reasons you might not be sleeping well?

The clinical definition of insomnia

Insomnia is defined as ‘a persistent difficulty with sleep initiation, duration, consolidation, or quality that occurs despite adequate opportunity and circumstances for sleep, and results in some form of daytime impairment’ (per the International Classification of Sleep Disorders recent 3rd edition, or ICSD-3).

Clinically speaking, insomnia (or insomnia disorder, ID) is now classified as:

1. Chronic insomnia disorder (occurring at least 3 times a week, with symptoms enduring for at least 3 months)
2. Short-term insomnia disorder (describing many of the chief complaints of sleeplessness but which lasts a shorter period, has a clear trigger and may occur episodically)
3. Other insomnia disorder (for those who have insomnia symptoms but do not qualify for a diagnosis of chronic ID or short-term ID)
4. Isolated symptoms and normal variants (temporary sleeplessness experienced by otherwise healthy individuals)
5. Excessive time in bed (referencing isolated problems with sleep by patients who don’t complain of insomnia)
6. Short sleeper (identifying a rare category of individuals who sleep, on average, 6 or fewer hours a night but who have no sleep/wake complaints)

Is MS-related insomnia disorder a thing?

Insomnia disorder (ID) is a common condition known to be comorbid with MS. (Comorbid means existing simultaneously with another disease.)

In a study published in March 2018 in Sleep, results showed that “ID comorbid to MS was strongly associated with increased levels of cognitive and somatic arousal, higher endorsement of dysfunctional beliefs about the consequences of insomnia on daytime functioning, and worry about insomnia and more frequent engagement in sleep-related safety behaviors.”

What does this mean? It means, in a nutshell, that complaints about insomnia among those who have MS may be more directly correlated with behaviors that aren’t strictly neurological.

Insomnia disorder is thought to originate from factors outlined as “the 3 Ps”—predisposing, precipitating, and perpetuating factors.

3Ps of insomnia: predisposition

The “3 P” theory suggests that people who have ID carry traits that are biological, psychological, or social at their roots. These can include:

• Age and age-related illness (arthritis, cardiovascular disease)
• Personality traits (need for control, obsessiveness, negative self talk, pessimism)
• Psychiatric conditions (mood disorders, depression, psychosis, anxiety)
• Lifestyle choices (working night shift, busy social nightlife, parenthood and caregiving)
• Biological components (hyperarousal due to reduced sleep drive, history of insomnia in childhood)

Note that none of these predispositions are unique to those with MS.

3Ps of insomnia: precipitation

The following factors associating with ID arise from life’s stressors:

• Disasters (manmade, natural)
• War and strife
• Personal or family illness (generalized)
• Death of a loved one
• Divorce
• Job loss or conflict
• Bankruptcy
• Specific psychiatric concerns related to common nonneurological illness (pain, central nervous system arousal, physical disruption of sleep)

Again, these are stressors that can lead to ID in any person, regardless of their MS status.

3Ps of insomnia: perpetuation

Behaviors that lead to insomnia (regardless of the presence of MS) can also perpetuate problems with sleeplessness:

• Overcompensation for lost sleep (weekend "catchup" sleep), resulting in circadian dysregulation
• Going to bed too early, then ruminating and worrying about losing sleep (known as orthosomnia, or losing sleep over worrying about losing sleep)
• Daytime napping, which can delay sleep onset or lesson one’s “sleep drive” at night
• Anxiety associated with stress in the sleeping space (performing work in one’s bedroom, for instance) which conditions one to associate the bedroom with stress (also known as conditioned arousal)
• Poor sleep hygiene (alcohol before bedtime, consumption of caffeine too late in the day, heavy meals close to bedtime, use of backlit electronic devices without filters up to and into bedtime)

Addressing these “3 Ps” of ID means being honest about one’s behaviors, lifestyle, and decision making. While insomnia may be prevalent among people with MS, the truth is that it’s prevalent among most people for these reasons, so it’s not necessarily useful or practical to assign blame to MS for having ID.

What the research says about MS and insomnia

While being anxious about sleep problems may be a part of your MS journey, it may not be directly related to having MS, but rather directly related to your individual personality and behavioral traits.

The research published in Sleep this year seems to bear this out. While a review of the literature shows an ongoing debate as to sleeplessness among those with MS from a clinical perspective, the research, in general, is inconclusive:

“Capitalizing on the formal ID diagnosis, our study found no link between MS clinical characteristics (i.e. age at onset, duration of the disease, MS type, EDSS, and MS treatment) and ID diagnosis… these results suggest that ID diagnosis is very poorly associated with MS clinical characteristics.”

The study authors pointed out that their conclusions have been corroborated by a much larger study in Portugal (see "Chronic insomnia disorder in multiple sclerosis," cited below).

In addition, a third study of 112 Saudi Arabian patients published last October in the Journal of the Neurological Sciences showed a very low risk of developing insomnia in those patients who were not also diagnosed with depression. According to that research, “insomnia was associated with higher education level but not with degree of disability, duration of illness or type of disease modifying agent used.”

Finally, a fourth study looking at the sleep problems associated with multiple sclerosis (PLoS One, 2012) found that “the psychological and physiological impact of MS is greater among poor sleepers than among good sleepers. In our study a high psychological burden of MS was independently associated with poor sleep. Nearly half of MS patients have reported significant anxiety levels within the first year of diagnosis.”

Essentially they are suggesting that the emotional and psychiatric load endured (legitimately) by those with MS is probably the most likely root cause for sleeplessness in the population they studied.

Treating insomnia when you have MS

Whether sleeplessness can be positively linked to MS from a clinical vantage point is less useful than knowing that insomnia, by whatever cause, needs to be addressed. Poor sleep by any cause can exacerbate all neurological conditions.

Sometimes treating insomnia may be as simple as striving to practice better sleep hygiene (see 3 Ps of Insomnia: Perpetuation, above). It’s a great place to start. Consider, also, the external triggers of your sleeplessness. Maybe you need a “digital detox,” for instance, or should ask for help with family challenges, or maybe your job environment could use some upgrades.

If improvements in sleep hygiene and external triggers aren’t successful in reducing or eliminating your problems with insomnia, talk to your neurologist about possible treatments.

Will I have to take medication?

Having insomnia doesn’t necessarily mean you’re going to be put on Ambien. In fact, research shows that insomnia can be more successfully treated by cognitive behavior therapy specifically addressing the needs of insomnia patients (CBT-i), or through a combination of medication and CBT-i.

It may be that you need to consider pain treatment, if that is one of the causes of your sleeplessness (and it’s a major cause for many people with MS). Some treatments are pharmaceutical, while others are related to alternative therapies like chiropractic or massage.

You might be simply going through a period of temporary sleeplessness due to a recent course of steroids, which are known to contribute to hyperalertness and struggles with sleep. Once the steroid treatment tapers away, you should be able to get back to normal sleep.

Whatever you do, don’t accept insomnia as a normal part of life, or an outcome of MS. Losing sleep is not going to help you maximize your energy, improve your symptoms, or reduce progression. If anything, it will make MS harder to live with.

Instead, take your sleeplessness seriously (and find a doctor who will do so, too); it’s one of the kindest things you can do for yourself.