Greetings to you all.
My name is Tina, I'm 60, I'm female.
I've had a challenging 12 months of thinking "I feel so old, if this is old age, God take me soon". I'm too old and knackered to do my job, (occupational therapy on the community working with children with profound physical and mental disabilities). So I retire early, with the promise of returning on a Bench contract, thereby I can choose when and for how long I work. We have a holiday home in Andalucia, Spain. My husband had a stroke 5 years ago, time to make time for us now. We are both 2nd time arounders and been together for 13 years, kids grown up. We sell our large house, buy a smaller flat, pay off debts. Let's have a long holiday in the sunshine, drink good wine, eat the best olives in the world and grow old disgracefully!
After three months of discovering this forum and reading all your posts, silently thinking "I feel that pain and total misery too", I was just yesterday finally given my own diagnosis of PMR and probable GCA - but after 25 days of Pred (40mg for 5 days, 35mg for 6 days and 14 days of 30mg) it's impossible to prove the GCA now. I paid for a private Rheumatologist consultation yesterday, as my GP thought I had PMR but felt more was going on too. My first ESR was 101, after 5 days on 40mg Pred the reading was down to 35. I felt improvement within two and a half hours of taking the first dose. But the quick tapering hasn't mopped up all the inflammation and although my suicidal thoughts had receded, the fatigue and pain reduced by 60%, the nice Rheumy told me to increase immediately back up to 40mg and this morning, as I write, I feel like the old me. The NHS wait here on the Fylde Coast, is at least 8 weeks and 12 is more realistic. It was £150 well spent, a one off. When I was working, I would spend that on a pair of winter boots, I'm happy to wear an old pair this year!
I hate to criticise the NHS, I've been proud to work for them for most of my life, but my experience of seeing a different GP every time in our group practice, including trainees, hasn't made my PMR journey easy. They have so little time allocated, 10 minutes per patient. Some GP's didn't even make eye contact with me, they just kept tapping away at the keyboard whilst I told my tales of woe. One GP sent me for an X-ray for the wrong limb! It's a shame that they are under such pressure and we ultimately suffer too long before getting the proper treatment.
To all the folk who read this, don't give up. Keep going until you too find someone who listens. This is my first post, I have gained so much from you all, I feel as though the "aunties and uncles" are my mentors, the rest of you are my cohorts and Kate's book is my bible. X