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CONTEXT: Pain is a major symptom in adults with Fibrous dysplasia/McCune-Albright Syndrome (FD/MAS) and response to current treatments, including bisphosphonates and standard analgesics (NSAIDs and opiates) is unpredictable. No studies have explored whether the type of pain is variable in this patient group. OBJECTIVE: To determine the frequency of neuropathic-like pain in patients with FD/MAS. DESIGN: Retrospective, dual registry study. SETTING: Community. PATIENTS: FD/MAS online registries: the FD Foundation (FDF), USA based, and the Rare and Undiagnosed Diseases (RUDY) study (UK). INTERVENTION: Subjects completed questionnaires to evaluate the presence of features of neuropathic-like pain (painDETECT) and the impact sleep quality (Pittsburgh Sleep Quality Index) and mental health (Hospital Anxiety and Depression Scale). Descriptive statistics were used to characterize the prevalence and associated burden of neuropathic-like pain. MAIN OUTCOME MEASURES: Incidence of neuropathic, nociceptive and unclear pain. RESULTS: Of 249 participants, one third experienced neuropathic-like pain. This group had statistically significantly (p<0.001) worse mental wellbeing and sleep in comparison to those with predominately nociceptive pain. CONCLUSIONS: Neuropathic-like pain is common in patients with FD/MAS and associated with worse quality of life. Evaluation of pain in patients with FD/MAS should include assessment of neuropathic-like pain to guide personalized approaches to treatment and inform future research.

Original publication




Journal article


J Clin Endocrinol Metab

Publication Date



Fibrous dysplasia, McCune-Albright Syndrome, mental health, neuropathic-like pain, nociceptive pain, quality of life