Expert Voices: How to sleep well with multiple sclerosis

In this installment of our “Expert Voices” series, Multiple Sclerosis News Today asked Alexa Kane to answer some of your questions about how sleep affects multiple sclerosis (MS) and vice versa.

Kane is a clinical health psychologist at the Cleveland Clinic Mellen Center for Multiple Sclerosis for Treatment and Research and the Sleep Disorders Center, an integrated healthcare system serving the Cleveland metropolitan area and surrounding region. She serves as director of the Mellen Center health psychology training program and supervises post-doctoral health psychology fellows in the provision of health psychology services.

Kane has a special interest in the intersection of psychological aspects of MS care and behavioral sleep medicine. She also is interested in ways to deliver high quality clinical care in efficient, effective, and innovative ways. Her current clinical and research focus is exploring innovative treatment delivery models and the treatment of sleep disorders in people with neurological disorders. 

Alexa Kane researches how best to treat sleeping disorders for people with neurological disorders. (Photo courtesy of Alexa Kane)

What are common contributors to poor sleep quality for people with MS?

We have primary factors and secondary factors that can contribute to poor sleep. Primary factors are generally related directly to MS disease itself. The secondary factors are symptoms such as plasticity, bladder issues, pain, anxiety, stress, depression, and then other sleep-related disorders that are not necessarily specific to MS. But we tend to see a larger prevalence rate in persons living with MS, such as restless leg syndrome, periodic limb movement disorder, and sleep apnea.

In what ways might poor sleep quality influence a person’s MS? 

Fatigue affects up to 90% of people with MS, and in 40% of those people, fatigue is reported as the worst symptom. Of course, we want to do anything we can to alleviate fatigue, and one route for this is to treat poor sleep. Sleep disturbance has been associated with an increase in perceived fatigue for individuals with MS.

Poor sleep can also cause impairments in daytime functioning, quality of life, concentration and memory, and mood issues. For example, less sleep equals more irritability. I often tell people that when we’re not sleeping well, it’s very easy to feel like you want to claw somebody’s face off because we have increased irritability, less frustration tolerance. That, in turn, can also lead to reduced motivation or energy.

Then there’s also the sleep-related breathing disorders, like sleep apnea, that can contribute to fatigue, sleepiness, cognitive impairment, and depression.

For those with MS struggling to sleep, do you have unique advice not usually found in an internet search?

Most of my tips are going to be related to insomnia because that’s kind of my bread and butter. The gold standard treatment for insomnia is something called Cognitive Behavioral Therapy for Insomnia (CBT-I). CBT-I addresses behaviors and thoughts that can negatively impact sleep. So if you’re having difficulty sleeping, Google CBT-I to see if you can find a provider in your area. 

One of the keys to combating insomnia or sleep difficulties is reteaching the brain that the bed is for sleep. Our brains are always looking for things in the environment to pair together, which make it easier for us to navigate the world. As a result, many people who have insomnia really begin to dread their bedroom. For them, the bedroom is associated more with wakefulness and frustration as opposed to sleepiness, and they may also associate their bedroom with habits like eating or resting — that’s a big one in MS — or watching TV or using smart devices. So what CBT-I does is to reteach the brain that the bed is for sleep.

One of the best things you can do to regulate your sleep cycle and circadian rhythm is wake up and get out of bed the same time every day. We have more control over what time we wake up as opposed to what time we go to sleep, because we can force ourselves to get up with an alarm. On the other side, you should really try to wait to get in bed until you’re sleepy. A lot of times I have people come in and say, “I go to bed at 10 because if I go to bed at 10 p.m., then I sleep till 6 a.m., then I’ll get eight hours.” But they go to bed at 10 and restlessly lay there, reteaching the brain that the bed is for restlessness as opposed to sleepiness.

If bed time is a circumscribed time because you have somebody who has to help you to get into bed, then you want to try to use relaxation exercises or distraction techniques to dampen anxiety.

We want to use our bed for sleep and intimacy only, so if you’re not sleeping you should actually get out of bed and do something rather boring. I always joke that if you don’t like motorcycle magazines, then you can flip through a motorcycle magazine. If you don’t like cooking, flip through a cooking magazine. Then, once you get sleepy, you get back into bed.

When fatigued, some take naps but wake up feeling drowsier. Do you have any advice for that group of MS patients?

Naps should be avoided when possible. If you need to take a nap for your health and well-being, that’s fine, but you can do it in a smart way. My clinic recommends limiting napping to about 30 minutes. And try to do it as early in the day as possible. When we sleep longer than 30 minutes, we can kind of get into a full sleep cycle, and oftentimes that will have people wake up feeling drowsy or groggy. So set an alarm to ensure you don’t sleep longer than 30 minutes.

It’s important to really try to understand the difference between sleepiness and fatigue. Sleepiness is when you get drowsy, when your eyelids are starting to close. Fatigue is like there’s 400 pounds hanging off your body, but your mind is still running. If you’re sleepy, you should use your bed for sleep. But if you are going to rest, you should rest somewhere else.

If there are tricky times for you to stay awake, like right after supper or while watching the news, set an alarm. Sometimes people will lie down to rest and they don’t really need to sleep, but will end up falling asleep anyway.

If you do doze, don’t doze for longer than five or 10 minutes, because the more you sleep during the day, the more it’s going to take away from your sleep at night.

Do you have any insights about when people with MS should turn to sleep medication?

When compared to pharmacological intervention, CBT-I has been shown to be more effective in the long term for treating primary and chronic insomnia due to comorbid conditions like MS. That’s important to know.

So the first line of treatment should be cognitive behavioral therapy for insomnia. But you know what? With that said, sleep medications absolutely serve a purpose. Sleep meds work really well for short-term relief of sleep difficulties, although it’s really important to know that they should be used for a specific period of time, a short-term time, if we’re talking about insomnia.

Now, MS is unique as there are some medications that are not necessarily sleep meds yet can help people living with MS to ease fatigue or to relax and go to sleep if struggling with spasticity, spasms, restless leg syndrome — those kind of conditions. But for insomnia, we really try to use behavioral interventions first.

So if you’re struggling with sleep and it’s related to insomnia, behavioral interventions are the gold standard. If there are some other MS-related symptoms — spasms, plasticity, those kinds of things — then medications can be used to manage that probably right away.

What do you wish that more specialists would recognize about the role of sleep in MS?

As an MS community, we’re really trying to strive to identify modifiable symptoms. In a perfect world, all MS patients would be screened for sleep-related issues like insomnia or sleep-disordered breathing. That way, we could implement some really good treatment for sleep-related issues that contribute to overall fatigue levels and impede quality of life.

One, I wish that more specialists knew that CBT-I is the gold standard treatment for poor sleep. Two, I wish more specialists knew that sleep disorders are generally underrecognized and underdiagnosed or inadequately addressed in patients with MS.

Has any research into sleep and MS fascinated or surprised you?

Yeah, so I’ll start with something that probably didn’t surprise me, but it’s fascinating: a 2019 article which suggested sleep quality can actually influence the outcome of patients’ MS. Essentially, it suggested that there’s a link between sleep quality and the clinical evolution of MS, which I think is important because, again, we’re looking for those modifiable things — we can treat sleep disorders!

I think the more fascinating research is that we are still considering sleep disorders to be a hidden epidemic in MS, and yet we actually have really good treatments for insomnia and sleep-disordered breathing. But we need more access to these services. Again, it’s a modifiable part of treatment that we can really treat, which will then contribute to a better quality of life for folks diagnosed with MS.

Expert Voices is a monthly series involving a Q&A with an expert in the MS space about a specific topic. These topics and questions are curated from a survey in which we ask readers what they want to learn more about from experts.

Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.