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Prevalence of pain within limb girdle muscular dystrophy r9 and implications for other degenerative diseases

Lookup NU author(s): Mark Richardson, Dr Anna Mayhew, Robert Muni Lofra, Dr Lindsay Murphy, Professor Volker StraubORCiD



This work is licensed under a Creative Commons Attribution 4.0 International License (CC BY 4.0).


© 2021 by the authors. Licensee MDPI, Basel, Switzerland.Our primary aim was to establish the prevalence of pain within limb girdle muscular dystrophy R9 (LGMDR9). As part of the Global FKRP Registry, patients are asked to complete the Short Form McGill Pain Questionnaire (SF-MPQ) annually. We used the results of this questionnaire to determine individuals’ maximum pain score and total pain score and examined overall pain intensity and associations between pain intensity and LGMDR9 genotypes, age, and ambulatory status. We also considered the pain descriptors used and pain progression over time. Of the 502 patients, 87% reported current pain and 25% reported severe current pain. We found no associations in pain severity between the different genotypes of LGMDR9. However, we did find statistically significant associations between pain severity and ambulatory status and between our paediatric and adult populations. We found pain descriptors to be more common words that one may associate with non-neural pain, and we found that a significant number of individuals (69%) reported a fluctuating pain pattern over time. We concluded that pain should be considered a significant issue among individuals with LGMDR9 requiring management. Implications regarding assessment of pain for other degenerative diseases are discussed.

Publication metadata

Author(s): Richardson M, Mayhew A, Muni-Lofra R, Murphy LB, Straub V

Publication type: Article

Publication status: Published

Journal: Journal of Clinical Medicine

Year: 2021

Volume: 10

Issue: 23

Online publication date: 25/11/2021

Acceptance date: 21/11/2021

Date deposited: 06/12/2021

ISSN (electronic): 2077-0383

Publisher: MDPI


DOI: 10.3390/jcm10235517


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