While looking up the details of this paper to use for an answer to someone I discovered that it is now available "free to air" without paying for access to a journal. Helen Twohig is a GP in Yorkshire England and was part of a group who carried out a survey to assess the effects of PMR on patients and their day to day lives and experiences with it.
She works closely with a group in Keele who have done sterling work on PMR and GCA
Much of it is in medical science-speak so a bit complicated but throughout it you will find quotes from the patients. Those of you who are familiar with Yorkshire will hear their accent - I do!
I hope you may find some of these quotes useful to give to people so they can understand a bit of what you are going through. And if you happen to be in the Sheffield area - there is a rheumatologist mentioned who you'd think might really understand PMR! I don't know if he is still there, he was not too long ago.