Study finds many with MS don’t use available cooling options

Many people with heat sensitivity related to multiple sclerosis (MS) either don’t know about cooling strategies that may help ease their symptoms or know about them but don’t use them regularly, according to a Swiss registry study.

Nearly three-quarters of participants reported that more extreme temperatures, most commonly heat, worsened their MS symptoms. Simple cooling measures, such as taking a cold shower or drinking cold water, can help relieve these temporary symptom flare-ups, but many participants said they had not received advice about such strategies from their healthcare providers.

“Future studies are needed to survey healthcare professionals to better understand their awareness of heat-related symptom worsening and potential barriers to counselling on cooling strategies,” the researchers wrote.

The study, “Keeping cool – how persons with MS manage heat sensitivity: Insights from the Swiss multiple sclerosis registry,” was published in Multiple Sclerosis and Related Disorders.

About 60% to 80% of people with MS experience heat sensitivity, while some are sensitive to both heat and cold. Hot weather, fever, exercise, or other factors that raise body temperature can temporarily worsen existing symptoms for these patients. Unlike an MS relapse, which is caused by new inflammatory activity in the brain or spinal cord, heat-related symptom worsening is temporary and typically resolves once body temperature returns to normal.

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Survey probes how patients use cooling strategies

Several approaches can help manage heat-related symptoms, ranging from simple measures such as drinking cold water or taking a cool shower to specialized cooling garments. However, “despite growing evidence on the benefits of cooling, comprehensive data on the practical application of cooling methods used by [people with MS] are still limited,” the researchers wrote.

To better understand how people with MS learn about and use cooling strategies, the team surveyed participants in the Swiss MS Registry. Of more than 2,300 people invited to participate, 760 completed the survey. Their average age was 53, and about two-thirds (65.5%) had relapsing-remitting MS.

Nearly three-quarters (73.3%) reported some type of temperature sensitivity: 48.8% experienced heat sensitivity alone, 18% were sensitive to both heat and cold, and 6.4% reported cold sensitivity alone. The symptoms most commonly worsened by temperature changes were fatigue, muscle weakness, loss of sensation, and walking difficulties.

Across all participants, 62% reported being aware of cooling techniques. In statistical analyses accounting for other factors, people with heat sensitivity or both heat and cold sensitivity were significantly more likely to be aware of cooling methods than those without temperature sensitivity. Those with at least seven MS-specific symptoms were also almost twice as likely to be aware of these methods compared with people with fewer symptoms.

“It is likely that these groups are more motivated to seek solutions due to their direct experience with temperature-related symptom worsening and higher symptom burden,” the researchers wrote.

Women were 82% more likely than men to be aware of cooling methods. This could reflect gender differences in seeking health-related information, according to the team.

Of the 348 participants who had heat-only or heat-and-cold sensitivities and knew about cooling methods, fewer than half (44.3%) put their knowledge into practice.

The most commonly used approaches were cold showers, ventilators, drinking cold water, and using cool cloths or scarves. Most participants (68.2%) rated these strategies as more or less effective, while about 23% considered them very effective.

The Swiss MS Society was the most common source of information about cooling methods, followed by other people with MS. Healthcare providers were much less frequently cited, suggesting clinicians may be missing opportunities to discuss symptom management with patients.

The scientists noted that further research on cooling strategies could provide healthcare professionals with evidence to base their recommendations on. “Future studies should investigate and compare the effectiveness and feasibility of individual cooling methods to provide … more targeted advice,” they wrote.