Just about everyone struggles with sleep at some point in their lives, but if you have multiple sclerosis, you may face some pretty unique challenges. “Several studies have demonstrated that there is more sleep disturbance experienced by people with MS than the general population and more daytime fatigue,” says Kathleen Costello, associate vice president of healthcare access for the National MS Society. Since approximately 60% of people with MS are affected by sleep disorders, it’s no big surprise that fatigue is the most common symptom reported by people with the neurodegenerative condition—even above numbness and tingling.
So, what’s the deal? Is there an easy biological explanation for why people with MS struggle to make it to slumberland? According to Costello, there’s no overarching umbrella reason. The most likely explanation, experts agree, is a constellation of symptoms that add up to consistently bad rest. “The most frequently encountered sleep disorders are insomnia, sleep-related movement disorders, sleep-related breathing disorders, and circadian rhythm disorders affecting both adults and pediatric MS populations,” Costello says.
“It is thought that MS is a two-stage process,” says Christopher Lock, M.D., a clinical associate professor of Neurology at Stanford Health Care. “There is an inflammatory component which occurs early on, causing injury to the myelin.” Myelin sheaths are the protective outer coverings of the nerves within the central nervous system (home base for the brain, optic nerves, and spinal cord).
The electrical signal travelling down a nerve, known as an action potential, is “a bit like a ‘wave’ going around a stadium, requiring energy as the wave passes by and people stand up and sit down again,” says Dr. Lock. “When the myelin is stripped away, and the axons [the inner cables of the nerves] are exposed, the nerves must work harder. Over time, it is thought that there can be energy failure, and axons can be lost. When the axon is lost, the nerve is unable to recover.”
That’s when a process called gliosis, aka scarring, occurs. “The more gliosis, the more nerve transmission will be interrupted,” says Costello. The more nerve transmission interruption there is, the more sleep disrupting-symptoms you’ll experience. Hello, domino effect!
So if you have MS, what can you do to improve your chances of getting a restful night’s sleep despite the symptoms? Read on for some of the most common sleep obstacles, plus practical solutions for people with MS.
The Problem: Nighttime Urination
One common cause of sleep disturbance in people with MS is a condition called “nocturia,” which essentially means waking up during the night to hit the loo. It becomes a problem, says Costello, when you’re waking up more than a couple of times during the night.
Sleep Solution: We know it sounds elementary but cutting down on the amount of liquid you’re consuming before bedtime can help big time. Bladder dysfunction occurs in at least 80% of people with MS, so it’s best to restrict your sipping as you get closer to snoozing. And choose your fluids wisely. “Skip the alcohol and caffeinated beverages in the evening hours,” Costello says, as they’ll only make it harder to fall asleep.
The Problem: Muscle Spasms and Pain
People with MS can experience numbness, tingling, and change in sensation, due to damaged sensory pathways, and this can increase the pain sensation, Costello says. The discomfort is different from your run-of-the-mill tired muscle-feeling though. Think: burning, shooting, or searing pain that can be quite severe. In addition, musculoskeletal pain in the form of spasticity and spasms is common. In fact, the prevalence of restless leg syndrome (RLS)—a nervous system disorder that causes an uncontrollable urge to move your legs—is four times higher in folks with MS than in the general population. And get this: “Both types of pain can be worse at night and interrupt sleep,” says Costello.
Sleep Solution: “Stretching and aquatic therapy are both helpful for reducing muscle tightness,” says Costello. But “regular exercise can help improve sleep as well by being neuroprotective and generally good for health,” Dr. Lock says. You don’t have to put in hours at the gym in order to reap the benefits of physical fitness—daily activities like household chores, taking the stairs instead of the elevator, and walking the dog can all contribute to more restful sleep, plus they improve cardiovascular fitness, mood, cognitive function, and more. According to Dr. Lock, if workouts and stretching aren’t enough, it may be worth talking to your doctor about muscle relaxants and even Botox injections to help release tension in the areas that are the tightest and most painful.
The Problem: Anxiety
“Mood disorders can impact sleep—and both anxiety and depression are more prevalent in people with MS,” Costello says. “Treatment of the mood disorder may improve sleep.” Translation: If you feel better mentally, you’ll sleep better.
Sleep Solution: There are, of course, a ton of ways to address mental health issues, but integrating some mindfulness into your everyday is a good place to start. “Techniques such as progressive muscle relaxation can help,” Dr. Lock says. Try it tonight by lying flat and tensing up muscle groups: arms, then abs, then legs, for example. Hold for a few seconds and then release. Over time, this can help you learn how to unwind and destress quicker. And if that’s not enough, it may be a good idea to work with a therapist. “Cognitive-behavioral therapy (CBT) for insomnia may help to identify and change thoughts and behaviors that interfere with sleep,” says Costello.
The Problem: Insomnia
Studies show that as many as one in four people living with MS have insomnia (these rates are three times higher compared to the general population). Even so, insomnia remains underdiagnosed and undertreated, leading to more folks with MS experiencing sleep loss.
Sleep Solution: It may be time to talk to your doctor about medications that are safe to try. While there are no sleep meds specific to any type of MS, your doctor may have some ideas about what could help. “Prescription or nonprescription medicines can be used in the short term to help sleep, but long-term use is best avoided as the medications can lose effectiveness, and there can be withdrawal effects,” Lock says. So think of these meds as a temporary bridge to dreamland. They can help you feel more rested while you work on strategies, like CBT perhaps, that may take a bit longer to take effect.
The Problem: Poor Sleep Hygiene
This isn’t about washing your face and brushing your teeth before hitting the hay (though we don’t want you to forget that either). “General measures to help sleep are called ‘sleep hygiene,’” Dr. Lock says. These are lifestyle changes that can help everyone—especially those with MS—sleep better.
Sleep Solution: Here are some simple tips to help combat fatigue and cope with the symptoms of MS. (P.S. If they feel a little familiar, it's because they are, and for good reason: They work!):
Create a sleep schedule. Pick a time to go to bed and wake up…and stick to it. According to Costello, implementing that kind of routine can go a long way in remedying sleep issues. “A consistent bedtime and wakeup time are important when trying to fall asleep,” she says. “Changing the routine makes it more difficult to wind down and relax in preparation for sleep.”
Keep it cool. Sleep in a cool room to avoid overheating,” Costello says. According to the Cleveland Clinic, the optimal sleep temp for grown-ups is between 60°F and 67°F. Anything above or below that can lead to restlessness.
- Go off the grid. Just overnight. “Reduce stimuli before bedtime such as computer and cell phone use; rather use the time before going to bed to relax.” Dr. Lock agrees that eliminating devices in the bedroom is a smart idea. “Looking at computer or smartphone screens can disturb sleep,” he says. The blue light they emit can mess with your circadian rhythm. Keep your rhythm in groove and power down at least a hour before bed.