Abstract
Objective: To describe signs and symptoms of adiposis dolorosa (AD) in a large cohort of individuals with this disorder to increase recognition, diagnosis, and research of this syndrome. Design: Survey. Subjects: One hundred ten men and women with AD. Measurements: The survey included questions on demographics, obesity, signs and symptoms in soft tissues and body systems, susceptibility to infection, diet, treatments and lifestyles, medical and family history, habits, and exercise. Results: Subjects were white, non-Hispanic except for 3 Hispanics and 2 African Americans, and mostly women (82.7%) of northern European ancestry living in the United States (87.3%), average age 48.5 ± 10 years. The majority of respondents were obese, body-mass index of 34.7 ± 8.7 kg/m2 and had AD for 14.5 ± 11.9 years. Onset of growths began primarily in the arm or leg at a mean age of 34.5 ± 12.8 years (range, 7-67 years). The majority reported pain, fatigue, weight gain (25.7 ± 15 kg), multiple growths, and weakness at onset. The median number of palpable growths was 77.3 ± 84.5 in subcutaneous fat from scalp to dorsal foot. Growths ranged from firm and pea-sized to large, fixed, and deep. Pathology descriptions of growths included lipoma, fibrolipoma, or angiolipomas. Autoimmune disease and fibromyalgia were prominent (38.2%), as was diabetes (16.4%). Almost all respondents reported exercise-associated pain in growths, and 100% saw no decrease in growths with weight loss. Over 75% had liposuction and over half reported regrowth. Almost half reported family members with growths. Conclusion: Our survey results suggest AD is a painful syndrome involving growths in all subcutaneous fat. It can be inherited or sporadic, beginning in the third decade of life, but can occur in children and is accompanied by obesity, fatigue, joint and muscle aches, and other signs and symptoms affecting multiple organ systems. Exercise induces pain and has no effect on fatty growth size. The etiology of this syndrome remains unknown.