Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2025 Sep;72(3):475-484.
doi: 10.1002/mus.28460. Epub 2025 Jun 23.

Pain Experiences and Prescription Pain Medications Among People With Selected Muscular Dystrophies in the Muscular Dystrophy Surveillance, Tracking, and Research Network

Jonathan Suhl  1 , Kristin M Conway  1 , Shiny Thomas  2 , Sonja A Rasmussen  3 , James F Howard  4 , Nicholas E Johnson  5 , Paul A Romitti  1 , Katherine D Mathews  6 ; Muscular Dystrophy Surveillance, Tracking and Research Network (MD STARnet)
Affiliations

Pain Experiences and Prescription Pain Medications Among People With Selected Muscular Dystrophies in the Muscular Dystrophy Surveillance, Tracking, and Research Network

Jonathan Suhl et al. Muscle Nerve. 2025 Sep.

Abstract

Introduction/aims: Pain is a recognized symptom of muscular dystrophy (MD), but little is known about prescription pain medications in this population. We describe pain experiences and pain medications prescribed for individuals with selected MDs using population-based surveillance data collected by the Muscular Dystrophy Surveillance, Tracking, and Research Network.

Methods: Pain and prescription data were abstracted from medical records for 1282 individuals with Duchenne and Becker (DBMD) MD during 2000-2015 and congenital (CMD), distal (DD), Emery-Dreifuss (EDMD), facioscapulohumeral (FSHD), limb-girdle (LGMD), and myotonic (DM) MDs during 2008-2016. Percentages of individuals prescribed pain medications for ≥ 6 weeks during follow-up were estimated. Logistic regression was used to examine associations with selected demographic and clinical characteristics.

Results: Moderate pain was observed among 34% of all people with available pain scores and varied by MD type (13%-53%). Pain medications were prescribed for 31.1%-40.2% of people 20 years and older, but less frequently (< 15%) among people less than 20 years old. Among people prescribed pain medications, the first medication was typically a non-opioid (57%), but both non-opioid and opioid medication classes were prescribed during follow-up (34%). Pain medications were typically prescribed for longer than 1 year (> 85%). Impaired mobility had the strongest association with prescription pain medication.

Discussion: The prescription of pain medication is common for people with symptomatic MD. Most people were prescribed only non-opioids. These data highlight pain management as a frequent component of MD care. Understanding modifiable factors associated with MD-related pain and effective interventions may help improve care.

Keywords: facioscapulohumeral muscular dystrophy; limb‐girdle muscular dystrophy; muscular dystrophy; myotonic dystrophy; prescription pain medication.

PubMed Disclaimer

Conflict of interest statement

K.D.M. receives research funding from the Paul D. Wellstone Muscular Dystrophy Cooperative Research Center grant (NIH U54 NS053672), and the Centers for Disease Control (U01 DD001248). She serves as an advisory board member for MDA and the FSH Society; is a board member for the Friedreich Ataxia Research Alliance (FARA); receives or has recently received clinical trial funding from PTC Therapeutics, Sarepta Therapeutics, Pfizer, Reata, Italfarmaco, Fibrogen, Italfarmaco, CSL Behring, AMO and Reata. S.A.R. serves on scientific advisory committees for pregnancy registries for Harmony Biosciences, Axsome Therapeutics, Biohaven Pharmaceuticals (recently acquired by Pfizer), and Myovant Sciences. N.E.J. has received grant funding from NINDS (R01NS104010, U01NS124974), NCATS (R21TR003184), CDC (U01DD001242), and the FDA (7R01FD006071). He has received grant funding from the Myotonic Dystrophy Foundation, C3 Foundation, and the Muscular Dystrophy Association. He receives royalties from the CCMDHI and the CMTHI. He receives research funds from Takeda, Sanofi Genzyme, Dyne, Vertex Pharmaceuticals, Fulcrum Therapeutics, AskBio, ML Bio, Pfizer, and Sarepta. He has provided consultation for Arthex, Takeda, Dyne, Avidity, Regenta, and Vertex Pharmaceuticals. The other authors have no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
Pain locations among people diagnosed with muscular dystrophy in the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), 2008–2016. Percentages describe the number of people identifying the pain location out of the number of people with at least one pain score (n = 1282).
FIGURE 2
FIGURE 2
Combinations of medication classes at first record and during follow‐up for all muscular dystrophies (MD) combined in the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), 2008–2016 (n = 1282).
FIGURE 3
FIGURE 3
Long‐term pain medication during 5‐year follow‐up for any pain medication and opioid medication for all muscular dystrophies (MD) combined in the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), 2008–2016 (n = 1282).
FIGURE 4
FIGURE 4
Documented prescription pain medication by age at first health encounter for all muscular dystrophies (MD) combined in the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), 2008–2016 (n = 1282). The sum of non‐opioid and opioid totals equals the percent with any prescription medication.
See this image and copyright information in PMC

Similar articles

See all similar articles

References

    1. Della Marca G., Frusciante R., Vollono C., et al., “Pain and the Alpha‐Sleep Anomaly: A Mechanism of Sleep Disruption in Facioscapulohumeral Muscular Dystrophy,” Pain Medicine 14, no. 4 (2013): 487–497, 10.1111/pme.12054. - DOI - PubMed
    1. George A., Schneider‐Gold C., Zier S., Reiners K., and Sommer C., “Musculoskeletal Pain in Patients With Myotonic Dystrophy Type 2,” Archives of Neurology 61, no. 12 (2004): 1938–1942, 10.1001/archneur.61.12.1938. - DOI - PubMed
    1. Guy‐Coichard C., Nguyen D. T., Delorme T., and Boureau F., “Pain in Hereditary Neuromuscular Disorders and Myasthenia Gravis: A National Survey of Frequency, Characteristics, and Impact,” Journal of Pain and Symptom Management 35, no. 1 (2008): 40–50, 10.1016/j.jpainsymman.2007.02.041. - DOI - PubMed
    1. Huang M., Magni N., and Rice D., “The Prevalence, Characteristics and Impact of Chronic Pain in People With Muscular Dystrophies: A Systematic Review and Meta‐Analysis,” Journal of Pain 22 (2021): 1343–1359, 10.1016/j.jpain.2021.04.001. - DOI - PubMed
    1. Jacques M. F., Stockley R. C., Bostock E. I., Smith J., DeGoede C. G., and Morse C. I., “Frequency of Reported Pain in Adult Males With Muscular Dystrophy,” PLoS One 14, no. 2 (2019): e0212437, 10.1371/journal.pone.0212437. - DOI - PMC - PubMed