I am a 75 yo male who has and continues to exercise at an elite (nationally rated) level. I have been involved in sport continuously since I was a child. When I was about 45, about 30 years ago, for some reason I didn't exercise for about 5 days and noticed that I had what I thought was generalized pain through my shoulders and hips for no reason at all. I had probably had this pain for years, but blamed it on my daily, but extensive exercise schedule, which I obviously love to do. I went to a rheumatologist with a certificate in Sport Medicine and apparently without knowing what polymyalgia rheumatica (PMR) was gave him a textbook description of the disease. He Rx prednisone (pd) 10 mg per day for one week. Within 6 hours of taking prednisone I was a new man with no pain. The results we so obvious that my wife noticed the difference before I told her what I had done.

I tapered off pd over a period of months and was fine. The problem was PMR came back about a year later. I went on pd again and tapered off again over a period of months. I was fine for about a year and then PMR came back. This process of returning PMR went on for about 10 years with the recurrence period of getting PMR getting less and less.

About 15 years ago, I then went to another rheumatologist who did an extensive physical exam and finally told me he didn't think I had PMR, but didn't know what I had.

About 10 years ago, due to the continuing recurrence of PMR I started going on 2.5 mg of pd on a daily basis and this for a few years stopped the recurrences of PMR.

About 4 years ago I had my genome sequenced by Illumina for no special reason and discovered that I had a variant of “unknown clinical significance but suspicious for pathogenicity for calpainopathy.” Calpainopathy, or limb-girdle muscular dystrophy type 2A (LGMD2A), I have is due to variant v.338T>C (p.lle113Thr). I really do not understand what all these letters and numbers mean.

Just after having my genome sequenced I visited another rheumatologist about any possible connections between the variant I have and what I and others feel is a strange presentation of PMR. He didn't want to do anything since the 2.5 mg of pd per day seemed to address much of my pain at that time.

I currently have constant pain for no reason in my shoulder and hip girdle area even while I type this note. My sedimentation rate has never been elevated and my C reactive protein is usually around 1.

Should I just consider myself lucky that I am not in a wheelchair as most LGMD2A patients are, or is there anything I could do to stop the pain. I am also on Aleve 220 mg twice a day. I consider myself very healthy but for the pain.