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Have FSHD that sent me to a doctor in my early 20’s and was diagnosed with fibromyalgia which it wasn’t. Finally got diagnosed when it affected my breathing. Had genetic testing that confirmed FSHD in myself and adult son 2 years ago. I always knew I could not do the things my friends did was much weaker but put it down to the fibromyalgia. When I saw the wonderful doctor for my breathing she sent me to a also wonderful neurologist who was quite sure in my one appointment (had muscle test that day forget the name) that day I had FSHD. I am also sure now my mother had it but was never diagnosed and suffered in pain until she passed when she was 91. She had a long life but hated to see her suffer in her later years. She had compressed back disc which I also have but my neurologist said mine was probably also due to the muscles which I think hers were also. She walked bent over in the last years. She also had the excruciating shoulder pain which I am just starting to experience. Haven’t been able to lift one arm over my head for years. I have lots of other pains as I am sure everyone does but I am just so glad to finally put a name to what I have.