title: Chronic pain in persons with myotonic dystrophy and facioscapulohumeral dystrophy.
abstract: OBJECTIVE
  To determine the nature and scope of pain in working-aged adults with myotonic muscular dystrophy (MMD) and facioscapulohumeral muscular dystrophy (FSHD).
  
  
  METHODS
  Retrospective, cross-sectional survey.
  
  
  METHODS
  Community-based survey.
  
  
  METHODS
  Convenience sample of subjects with MMD and FSHD.
  
  
  METHODS
  Not applicable.
  
  
  METHODS
  Overall intensity and duration of pain, pain inference, pain sites, pain treatments, and relief provided by pain treatments.
  
  
  RESULTS
  More subjects with FSHD (82%) than with MMD (64%) reported pain. The most frequently reported pain sites for both diagnostic groups were lower back (66% MMD, 74% FSHD) and legs (60% MMD, 72% FSHD). Significant differences in pain intensity were found between the diagnostic groups in the hands, legs, knees, ankles, and feet, with patients with MMD reporting greater pain intensity at these sites than patients with FSHD. Age was related to the onset of pain (participants reporting pain were younger than those not reporting pain in the FSHD sample), but pain severity was not significantly associated with age in those reporting pain. Respondents with both diagnoses that reported mobility limitations and used assistive devices (eg, wheelchair, cane) reported more pain severity than those with mobility limitations who did not use assistive devices, who, in turn, reported more pain severity than respondents who reported no mobility limitations at all. The treatments that were reported to provide the greatest pain relief were not necessarily those that were the most frequently tried or still used.
  
  
  CONCLUSIONS
  The findings indicate that pain is a more common problem in persons with FSHD than in persons with MMD, although it is common in both populations. In addition, these pain problems are chronic, underscoring the need to identify and provide effective pain treatments for patients with these neuromuscular diseases.
authors.affiliation: Department of Rehabilitation Medicine, University of Washington School of Medicine, Seattle 98195-6490, USA. mjensen@u.washington.edu.
authors.forename: Mark P
authors.initials: MP
authors.lastname: Jensen
authors.forename: Amy J
authors.initials: AJ
authors.lastname: Hoffman
authors.forename: Brenda L
authors.initials: BL
authors.lastname: Stoelb
authors.forename: Richard T
authors.initials: RT
authors.lastname: Abresch
authors.forename: Gregory T
authors.initials: GT
authors.lastname: Carter
authors.forename: Craig M
authors.initials: CM
authors.lastname: McDonald
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D016009:Chi-Square Distribution; D002908:Chronic Disease; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020391:Muscular Dystrophy, Facioscapulohumeral / Q000150:complications* / Q000523:psychology; D009223:Myotonic Dystrophy / Q000150:complications* / Q000523:psychology; D010146:Pain / Q000209:etiology* / Q000523:psychology; D059408:Pain Management; D010147:Pain Measurement; D011788:Quality of Life; D012189:Retrospective Studies; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires