Table 1.

A patient’s story. From Lorna Neill, OMERACT patient research partner.

“… I started getting fit for a summer hill-walking and after the first long day’s walking, came back with soreness and stiffness in the right groin. I thought I had pulled a muscle or damaged a tendon so rested it for a few days. At the point where I could hardly walk as far as the bus stop, had great difficulty getting in or out of a car and could no longer drive because my legs would not do what I wanted them to, I should probably have seen my GP.
Both shoulders became acutely painful and I could not straighten my knees. This was no longer an ache but severe pain which prevented me sleeping at night and forced me to lie flat on my back so that I did not turn over onto sore hips and shoulders.
I could not get out of bed without help, was having night sweats, I had lost my appetite and felt really ill. When I needed to ask for assistance with dressing in the morning, I finally accepted that I was needing more help than my new granddaughter.
The next day I was given a provisional diagnosis of PMR with what I was told were classic symptoms. This was confirmed by my blood tests and I was started on 15 mg of prednisolone. Within 2 weeks I stopped sleeping all day and could move back to my own bedroom, which had been inaccessible as I was quite unable to climb stairs…
Over the 4 years my symptoms have varied in strength around my body, from month to month and over any 24-h period so that if asked to complete any survey question on pain, stiffness, or functioning, it would have to be very clear whether this referred to now, in the last week, or on average since last seen by the doctor.”