There is often difficulty raising the hands above shoulder level causing problems with combing the hair, reaching high shelves or hanging out clothes to dry. Lifting heavy objects may be difficult, even below shoulder level. Some people first notice a problem in sport or recreation, as in swimming overarm or serving at tennis. The effects on the lower limbs may cause foot-drop and a tendency to trip, an awkward gait with Lordosis, a tendency for one or both knees to give way and difficulty with stairs and steps. Because weakness is asymmetrical, often the initial complaint is about trouble with one shoulder only, or one leg.
Severity varies greatly, even between affected members of one family.
At one end of the spectrum of severity, affected people are handicapped in infancy or early childhood and are unable to walk by adolescence or early adulthood. At the other end of the spectrum, an affected person might never experience any handicap at all and even an experienced physician would find it difficult to be sure that he or she was affected. The heart is a muscle. The heart is not affected in FSH dystrophy. Recent research has shown changes in the eyes of people with FSH dystrophy.