Understanding and managing fatigue and sleepiness in MS
Industry Buzz
Fatigue is one of the most prevalent and challenging symptoms of MS. It affects 80-90% of patients. It's described as an overwhelming physical or mental exhaustion and cannot be explained by typical daily activities.
—Karin G. Johnson, MD, FAAN
During an early session on the final day of the American Academy of Neurology Annual Meeting, Karin G. Johnson, MD, FAAN, opened by thanking the night owls in attendance, drawing laughter from the audience—fitting for a session focused on sleepiness and fatigue in neurology, specifically in MS.
MS & fatigue
“Fatigue is one of the most prevalent and challenging symptoms of MS,” Dr. Johnson said. “It affects 80-90% of patients. It’s described as an overwhelming physical or mental exhaustion and cannot be explained by typical daily activities.” Its impact is widespread, affecting daily functioning, employment, and quality of life. In MS, fatigue is known as “lassitude.”
The mechanisms behind MS fatigue include pro-inflammatory cytokines, such as TNF, INF-y and IL-6. The “sickness behavior” model suggests that fatigue is an evolutionary response to inflammation, which forces rest and energy conservation, Dr. Johnson explained. Lesion locations also play a role in fatigue.
Key facts about fatigue and MS:
It’s not just a byproduct of the disease
It might precede other clinical symptoms, and it could also indicate progression
It is independent of depression and disability
It can be intense and severe, with an abrupt onset
It can occur in the morning and even after 7-9 hours of restful sleep
It worsens with heat and humidity
It has a longer duration and a longer recovery period
Clinicians can use patient-reported screening tools to attain a better understanding of a patient's fatigue level—including the Fatigue Severity Scale, the Modified Fatigue Impact Scale, and the Fatigue Symptoms and Impacts Questionnaire.
Sleepiness in MS
Sleepiness, on the other hand, is different.
While it’s associated with fatigue, it may also be mediated by undiagnosed sleep disorders (like chronic insomnia, obstructive sleep apnea, restless leg syndrome, and narcolepsy), poor sleep, location of MS lesions, and circadian rhythm changes. “More than 50% of patients with MS report dissatisfaction with sleep,” Dr. Johnson said.
She also noted that the Epworth Sleepiness Scale is a measuring tool for sleepiness in MS. “It’s good for screening, but it’s not a perfect scale. Just because an Epworth is normal doesn’t mean they don’t have a significant disorder — it may be more in the fatigue family than sleep.” “Treatment of sleep disorders and mood disturbances is a key part of fatigue & sleepiness management,” Dr. Johnson says.
Assessing the patient “I tend not to use questionnaires. I ask them how they feel,” says Dr. Johnson. “You want to know if they’re getting enough sleep. Map the daytime consequences with how much they sleep.”
She also says you need to dig into their lives a bit: Do they snore, have pain, or reflux? Are they depressed? Do they have anhedonia? Do they have pets keeping them awake at night? Does their partner snore loudly? Is their environment comfortable and dark? Do they live in a safe area? Do they have trauma? “All those issues externally or internally disrupt sleep,” Dr. Johnson says.
Dr. Johnson says it’s important to have a low threshold to get a sleep study for patients with fatigue or daytime sleepiness, as sleep disorders tend to be underrecognized in patients with MS. She also says to remember that even patients who are thin or small can have sleep apnea.
Pharmacological treatments for MS fatigue
Dr. Johnson says she doesn’t jump to pharmacological treatments right away, but there are a few available: High-efficacy therapies (HETs)—including S1P receptor modulators and B- and T-cell–targeting treatments—can help to improve physical fatigue more so than the cognitive or psychosocial domains.
The greatest improvements have been observed in patients receiving continuous treatment with ocrelizumab, fingolimod, and natalizumab, which may reduce inflammation that drives fatigue.
It’s important to know that the impact of HETs on fatigue may depend on the disease stage, as fatigue in later stages may be due to neurodegenerative changes. Nonpharmacologic management of fatigue in MS There are many ways to help patients tackle fatigue in MS, Dr. Johnson says.
Behavioral strategies that help patients understand their own fatigue, develop coping skills, and improve mood.
Psychological interventions, like cognitive behavioral therapy. “Psychology plays into fatigue. Neuroticism can present fatigue, and CBT can help them reframe negativity,’ Dr. Johnson says.
Energy-conservation approaches tailored to the individual
Regular exercise: Both aerobic and resistance training have been shown to reduce fatigue and improve overall well-being, with a general recommendation of at least 150 minutes of moderate activity per week. “I try to give my patients small goals, like walking around the block,” says Dr. Johnson. She notes that post-exertional malaise can also be an issue, so getting enough exercise without overexertion is a delicate balancing act.
Mindfulness practices and yoga may provide further symptom relief for some patients.
“MS fatigue remains a complex, multidimensional challenge,” Dr. Johnson says. “Fatigue in MS is best managed with an individualized approach. CBT, exercise, and energy conservation are evidence-based interventions.” Workplace interventions are helpful, as well, as many patients need work-from-home solutions.