What the new CDC Opioid Prescribing Guidelines mean for your Myositis pain Using the MSU pain study to advocate for better pain treatments

What the new CDC Opioid Prescribing Guidelines mean for your Myositis pain

Using the MSU pain study to advocate for better pain treatments


The 2016 CDC Opioid Prescribing Guidelines were seen as imposing strict opioid dose and duration limits and causing serious harm to patients who were taking opioids for pain management. By 2019, within the myositis community, the misapplication of these guidelines and attitudes about the role of pain in myositis resulted in a call to action by MSU to (1) put to rest for once and all the perception that “there is no pain with myositis,” and (2) understand the impact of the 2016 CDC Opioid Prescribing Guidelines on opioid use and pain management.

What does it mean for Myositis Patients?

The revamped 2022 CDC Opioid Prescribing Guidelines look to rectify the mistakes made in the 2016 guidelines – addressing issues such as opioid tapering after long-term therapy and proposing that physicians implement treatment changes in collaboration with the patient. They look to provide more equitable and wider access to evidence-based pain treatments with monitored evaluations for persistent pain. They also make clear that these are only guidelines.

MSU actively provided feedback on the public docket this spring and shared with both the CDC and FDA our seminal paper on pain and opioid medication use in Rheumatology, the first robust study to highlight the prevalence of pain in myositis as well as predictors of pain and medication among different types of myositis. The new CDC Opioid Prescribing Guidelines now provide additional impetus for MSU and others in our research community to act and prospectively investigate pain in myositis, its impact on quality of life, and determine the most effective treatment options for improved care management.

What can you do immediately?

If you are continuing to suffer with pain and feel your treatment is inadequate, have a conversation with your doctor to map out better options for you. There is no one size fits all plan. The journey is different for each of us. And we understand this can be a difficult conversation. Below are some tools to get you started:

  1. Download MSU patient-led research article in Rheumatology and take it to your doctor to initiate a discussion about pain treatment: Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies.
  2. View this Fireside Chat, The Power of Our Voice – MSU Pain Study
  3. Review the Clinical Best Practices for Pain Management reported by the Inter-Agency Task Force – esp. Medication, Restorative Therapies, Interventional Procedures, Behavioral Health Approaches – Pain Management Best Practices Inter-Agency Task Force Report
  4. Continue to make your voice heard. The CDC hears you and MSU hears you!

Debbie Dowell, MD, MPH, chief clinical research officer for CDC’s Division of Overdose Prevention, and guideline co-author said in a comment to reporters, “The science on pain care has advanced over the past 6 years. During this time, CDC has also learned more from people living with pain, their caregivers, and their clinicians.” She continues, “We’ve been able to improve and expand our recommendations by incorporating new data with a better understanding of people’s lived experiences and the challenges they face when managing pain and pain care.”

You can also learn more about the new 2022 guidelines here.

“With our pain study and publication, we have made a huge step forward in helping those with chronic myositis-related pain. Our doctors can no longer say Myositis is a painless disease. Myositis pain is real. Share our publication with your doctors to help them better understand. This is a great way to start a discussion about pain treatment. We must advocate for ourselves!” – Jerry Williams, Founder and President of Myositis Support and Understanding (MSU) who is living with dermatomyositis-related chronic pain

Email us at research@understandingmyositis.org with your experiences with pain in myositis and look for more follow-up to our Pain Study.

Download the Pain Paper

Watch the recording of our Fireside Chat, MSU Pain Study

We gathered in a casual fireside chat on Zoom for a retrospective look at how a community call to action led to a seminal study on pain in Myositis and what it means for the community.

We invited everyone who played a role in this success, including Drs Salman Bhai and Abhiram Bhashyam, co-authors of “Pain profile and opioid medication use in patients with idiopathic inflammatory myopathies”, which has been published in Rheumatology. Watch to learn how it all came together!

Watch the recording


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


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.

© 2024 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.

View COVID-19 resources and updates, and stay tuned to your state, local, and federal health agencies, along with the CDC.

Log in with your credentials


Forgot your details?

Register for Free Membership

Send this to a friend