Myositis and Pain

Myositis can cause pain

Bringing myositis pain to the forefront

Pain continues to be a misunderstood symptom of myositis. Although many of the experts dealing with this issue acknowledge that myositis pain is real, there are many clinicians that still believe pain is not associated, which leads to unnecessary suffering.

Studies on pain and myositis are very limited. We are working to help remedy this in hopes of better understanding and treatment of the pain associated with myositis.

Keep in mind that not all living with myositis experience pain. And, for those that do, many factors can be a part of the pain.

Share your experiences with myositis pain on our #MyositisLIFE website.

Myositis Pain and Opioids Survey Update

Pilot survey ended June 4, 2019

We wanted to share a little bit of news. We aren’t able to give many specifics yet, but thanks to our pilot survey with close to 500 responses, MSU is teaming up with several known myositis researchers to conduct a more formal study about myositis pain and the effects of the 2016 CDC regulations on opioids. We will let you know more as it becomes available, but for now, we want to thank YOU!

If you didn’t get to take the initial survey, don’t worry. You will have the opportunity to have your voice heard on this topic soon. Be sure to register for your free MSU membership at to stay updated via email and to continue getting involved to make a difference.

We couldn’t do anything we do without your participation, support, attention, and of course, your donations and sharing our fundraising efforts! You are the reason why our nonprofit organization was founded; by patients for patients. You matter!

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