Pain in Myositis Is Real!

The MSU pain article: “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies” has been published in Rheumatology and MSU is proud to make the paper available to you at no cost.

What Was This Study About?
This study looked at how common pain is in people living with Myositis, a rare muscle disease that causes weakness and other symptoms. Researchers also wanted to understand how people with Myositis manage their pain, including the use of opioid and non-opioid medications.

Who Conducted the Study?
The study was led by Myositis Support and Understanding (MSU), a patient-led advocacy group that wanted to highlight the pain experiences of people living with Myositis.

How Was the Study Done?
MSU created a survey and shared it with its members. A total of 468 people responded, and 423 were included in the final analysis. The study focused on three types of myositis:

  • Dermatomyositis (DM)
  • Polymyositis (PM)
  • Inclusion Body Myositis (IBM)

Researchers then used statistical analysis to see how pain experiences differed among these groups.

Key Findings

  1. Pain is Very Common in Myositis

    • 91.5% of participants reported having current or past pain, with almost all (99%) saying their pain was caused by Myositis.
    • People with Dermatomyositis (DM) were the most likely to experience pain (97.2%), while those with IBM had the lowest reported pain levels (80.9%).
  2. Age Impacts Pain Experience

    • People over 60 years old were less likely to report pain.
  3. Most People Use Pain Medication

    • Of the 387 people who reported pain, 335 (about 87%) said they used pain medications to manage it.
    • 69% of them used opioid medications (strong pain relievers often prescribed for severe pain).
  4. Different Myositis Types Didn’t Affect Choice of Non-Opioid Medications

    • The use of non-opioid medications (such as ibuprofen, acetaminophen, or neuropathic medications like gabapentin) was not linked to gender, age, or Myositis type.

Why Does This Matter?
Pain is often overlooked in Myositis, even though it has a major impact on quality of life. This study shows that pain management needs to be a bigger priority in Myositis care. It also highlights the need for more research to find better and more effective treatments beyond opioids.

Bottom Line:
Pain is a major issue for people with Myositis, and most rely on pain medications, including opioids. Doctors and researchers need to do more to address pain as a key part of Myositis treatment.

Download your free copy today!

Check Out Other Upcoming Support & Education Sessions

Tags:

Author:

Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support

2 Comments
  1. Jerry Williams 1 year ago

    Hi Amy and thank you so much for your kind words about MSU. We appreciate your continued support and hope you will continue to spread the word.

    Our pain research was based on my experience with myositis pain and the tremendous suffering I experienced but shouldn’t have had to. I finally found palliative care and I now have stable pain control. I am so glad that Emily Filmore was my support and co-founder of the study that led to the publication. It’s really an amazing story of how it all came to be including Lynn Wilson, Manuel Lubinus, Dr. Salman Bhai, and others. Thanks for the recognition! Big hugs!

  2. Amy Portmore 1 year ago

    MSU is a tremendous organization. The support it offers is outstanding.
    As well, the research and publication on pain in myositis is outstanding in and of itself. And that a community based support organization would do it so well, using standard scientific approach, such that it could be published in a prominent medical journal- outstanding!
    Amy Portmore, MD
    Physician and Myositis Patient

Leave a reply

Your email address will not be published. Required fields are marked *

*

This site uses Akismet to reduce spam. Learn how your comment data is processed.

© 2025 Myositis Support and Understanding Association (MSU). All rights reserved. | View our Privacy Policy, Terms, and Non-Discrimination policy. MSU is a charitable organization with 501(c)(3) tax-exempt status. Federal ID #47-4570748.

Log in with your credentials

or    

Forgot your details?

Register for Free Membership

Send this to a friend