A survey of MyMSTeam members found that fatigue was the multiple sclerosis (MS) symptom with the greatest impact on daily life. MyMSTeam conducted a survey to better understand how living with MS affects MyMSTeam members. The survey was conducted in October 2021, and it included 643 MyMSTeam members in the United States who have MS.
The survey asked members about:
MyMSTeam shares the results of member surveys so our community can learn from others’ experiences.
Fatigue and lack of energy topped the list of symptoms, as 81 percent of members surveyed said these issues had the greatest impact on their quality of life. Physical limitations (76 percent) and muscle weakness (66 percent) were also common.
“Yesterday, fatigue hit me like a brick,” one member reported. Another shared, “The fatigue today is just unbearable.”
"When people think about multiple sclerosis symptoms, the focus is often on the impact of the disease on mobility,” said Beth Schneider, senior research director at MyHealthTeam. “Yet, fatigue is the most commonly experienced symptom. And this relentless fatigue can have a wide-ranging impact on quality of life.”
Eighty-two percent of survey respondents reported that MS interferes with their quality of life. Members reported that MS complicates everyday chores (81 percent), causes stress (73 percent), interferes with an active social life (71 percent), and makes it hard to get around physically (71 percent).
“My mobility has declined,” one MyMSTeam member reported. “I now must use a walker in the house and a wheelchair in public. It’s a big adjustment.”
Another member commented, “I suffer from chronic, unrelenting pain and extreme fatigue. I miss my kids and so many events because of it.”
MyMSTeam members also shared the steps they take to lessen the burden of MS. Members’ top ways of managing MS include learning about treatment options (82 percent), staying on their prescribed medications (81 percent), and having meaningful conversations with their neurologists (76 percent).
Members also reported managing their MS by receiving emotional support (69 percent) and by connecting with and learning from others (63 percent).
MyMSTeam members shared some tips: “Setting my intentions for the day and remembering not to be hard on myself. MS is still new to me, so I find myself frustrated a LOT when my body does not let me do things. Having a positive attitude is key, and I am not going to let it get me down.”
Others shared practical suggestions for adjusting to reduced stamina or limited mobility. “I can do nothing for more than a short period of time,” one member wrote. “But I have a rollator (rolling walker). Very helpful with mobility, and it even has a seat in case I need it.”
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. More than 184,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
How much of an impact does MS have on your emotions or daily life? What do you recommend to others who might be struggling with the impact of MS? Share your thoughts in a comment below.