This article in today's Guardian covers a wide range of problems encountered by sufferers and those who seek to help them ( or not ).
We are, mostly, more fortunate inasmuch as our condition is almost universally accepted as genuine by the medical profession but we all know how infuriating it is to be greeted by people who tell us how well we look!
We also hear frequently of PMR/GCA sufferers having to wait too long for diagnosis because they are the\"wrong\" age, gender, do not have enough markers.
In today's political climate it is particularly worrying that there are people being told that they ARE fit for work when the genuinely are not. This COULD, perhaps has, apply to our \"community\"
I don't want to believe that there are scientists, researchers even doctors whose arms are twistable if their findings are inconvenient. How sad if it is so.
I dont see that Docters can say you are fit for work if your ESR is very high as is the case with me. I have been on steroids for 7 years. My ESR was 90 when I was first diagnosed.Every attempt to reduce the steroids would lead to it going up again .I have now been able to give them up by very gradual tapering off and Methotrexate. But this has given me abnormal liver function .and the esr is still 60
Hi Betty
I don't like to think there are many doctors out there who would say their patients were fit for work if they genuinely were not. On the other side of the coin I'm sure many of us know of people who are fit for work but prefer not to!
MrsO
Mrs.O I don't think either there are many such doctors but no profession is entirely honourable, alas, and just a handful can cause untold suffering.
I had a young colleague with CFT ( chronic fatigue syndrome ). I observed this young woman professionally and she was better than very good at her job, full of energy, imagination and drive. Nevertheless, when this disease struck it was her excellent Head that achieved justice for her in the form of a breakdown pension. She has given up on the medics that said it was all in the mind and relies. twenty tears down the line, on her own common sense and alternative therapies.