Study Shows Muscle Tightness (Spasticity) Affects Many People with MS and Better Communication with Doctors May Help

A nationwide online survey of 1177 adults with MS shows that many experience the often severe muscle tightness, called spasticity, daily and unpredictably. A majority raised the conversation about spasticity-related symptoms with their physicians themselves, and wished they had done it sooner.

Background: Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS. Spasticity may be as mild as the feeling of tightness of muscles or may be so severe as to produce painful, uncontrollable spasms of extremities, usually of the legs, and interfere with movement.
Although there are ways to measure spasticity, these often are not used by healthcare providers when assessing people with MS. There might be delays in diagnosing or treating this symptom if specific questions are not being asked, or if people with MS do not know how to describe what they are feeling.

The Study: A nationwide team of researchers aimed to understand how people with MS experience and describe symptoms associated with spasticity, and how people communicate about these symptoms with physicians. They the survey which was administered online to individuals with MS with the help of the MS Association of America, the MS Foundation, and the National MS Society. This work was sponsored by Jazz Pharmaceuticals.

Results: The survey was completed by 1177 adults with MS. Eighty percent of respondents reported that they experienced spasticity every day, or multiple times each day, and 34% had constant spasticity symptoms. Spasticity was mostly considered to be moderate to severe.

When asked what words they used to describe spasticity symptoms, 69% used the phrase "muscle spasms," but "muscle tightness" (67%), "stiffness" (62%), "muscle cramping" (51%), and "pain" (51%) also were commonly used.

While most participants had discussed spasticity with their physicians, the majority wished they had done so sooner, and the majority brought up the topic themselves. The most common reasons participants gave for not raising the topic sooner were:

• Not knowing how to describe the symptoms (52%)
• Assuming that spasticity was "simply a part of their MS" (29%)
• Assuming that spasticity could not be treated (18%)

How did spasticity impact daily life? Most (90%) reported that they were not able to predict when symptoms would occur or how severe it would be, and the majority noted that this unpredictability prevented them from doing things they would like to do.

Why does this matter? Spasticity is a common symptom of MS but it can be managed. This study raises the possibility that earlier and better communication about these symptoms between people with MS and their healthcare providers may help.

Learn about spasticity and how to manage it…

"Recognition, Description, and Variability of Spasticity in Individuals With Multiple Sclerosis and Potential Barriers to Clinician-Patient Dialogue: Results From SEEN-MSS, a Large-Scale, Self-Reported Survey " by Ben Thrower, MD; Scott D. Newsome, DO; Barry Hendin, MD; Sherry Danese, MBA; Jenifer Patterson, ARNP, MSCN; and Robert Chinnapongse, MD, MS is published in the International Journal of MS Care (2024) 26 (2): 75-80.

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