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My Story


At 48 after having some very difficult life experiences to cope with I started to be have very heavy, congested sensations in my body, was stiff in the mornings and my menopause began. Something didn’t feel right and I often visited the doctors, but put it all down to a difficult menopause. I would drag myself into the shower and begin the daily routine of getting myself going. I have done yoga since I was 18, I now made sure I did it every day. I went for acupuncture every week, regular homeopathy, took lots of supplements, cut down my work and tried to regain my health.

It was always there, some times I could almost forget it then at other times it would be worse and difficult to move. Then when I was 52 the worse bits got worse with severe bouts of stiffness and pain. In September 2007 I completely ceased up, unable to lift my head, and suffering extreme pain.

I was frightened and even though I didn’t believe in taking pain killers took the prescribed steroids. I had no idea what Polymyalgia was, presumed I would take a course of tablets and it would go in a couple of weeks………….and now two years later I am still taking steroids. I wasn’t blessed with a good consultant Rheumatologist. He couldn’t see past my age and refused to diagnose me, he just kept taking me rapidly off the steroids with disastrous consequences. After 3 very upsetting visits, a year later I had a second opinion which confirmed the Polymyalgia.

The temporal arteritis that my GP has always suspected and of which I am convinced, has never been diagnosed. When I ceased up and became house bound I stopped the acupuncture, but I have carried on searching for my health down many routes and roads, believing that there must be something to help my body get better. I have spent a lot of money doing so, something’s helping others not.

The steroid and Polymyalgia rollercoaster has been a truly torturous journey for me. I could write a book on the side symptoms I have struggled with but won’t, because if you are reading this you are probably on steroids and know it all too well. I have tried many times unsuccessfully to reduce the steroids. I have flare ups that bring a return of the pain, stiffness, temperal symptoms, extreme fatigue and depression.

The latter so hard to cope with, because I am not ‘depressed’, and a very positive person, but the pattern it follows for me with the flare ups convinces me it is part of the illness. September and October have been very hard. I am rearing my head again now, still convinced there is something out there that can help me rebalance and regain my health whilst trying to accept it the way it is and be gentle on myself. I have only recently found this web site and support group.

Sharing information and experiences is extremely helpful and empowering. So thank you to everyone who has made this possible when you are struggling with this awful illness yourselves. I wish everyone a quick and complete recovery, and if I find that miracle cure will let you all know.

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