How I learned to live with PMR - the text of a speech I gave at the launch of PMRGCAuk in 2010

[Polywotsit]

I was a typical ‘me generation’ woman, just hitting the mid-50s, thinking that now the children were grown up and off our hands, now that I had reached a certain level of self-confidence and at last felt grown-up, nothing could stop me. I was living the dream, with a great job as a university teacher, a great marriage to a wonderful man, and a level of health and fitness better than in my twenties. I was jetting around Europe, running half-marathons, going on mountain-biking holidays and generally having a whale of a time.

Then one winter morning late in 2005 I hauled myself out of bed and crashed headlong into the bedroom wall. I admit we do live in a small house. I call it an urban cottage and my son calls it a shoebox. But the reason I crashed into the wall was that I couldn’t stand up. My whole body felt so stiff that it was as though somebody had stitched all my muscles together overnight and left the needles in. A deep pain ringed my torso, all round my shoulders, all around my hips.

I sat with my head in my hands and thought “Kate, something definitely is wrong here”. This was not general wear and tear, it wasn’t that I’d been exercising too hard, it wasn’t tension because of the stress at work. I realised that I’d actually been feeling lousy for weeks. Oh yes, and that dull headache I’d been trying to ignore had been hanging around for two months.

I know it may sound ridiculous but it was very difficult for me to face up to this. Being ill wasn’t in my script. I didn’t have time for it. While I was staring at the wall through my fingers I remembered that my mother had had polymyalgia rheumatica when she was in her sixties. I remembered her describing the pain and stiffness and I remembered her crawling up the stairs on all fours. I also remembered that she took magic tablets and seemed to be over it after a year or so. Off I toddled to the doctor and bled into a test tube. And waited.

I was a lot luckier than most people who fall ill with PMR and GCA, because I had an idea what was wrong with me. It took time – about six weeks - for the firm diagnosis to come through. Everything else had to be ruled out, and I comforted myself that all the other things it might have been seemed a lot worse than PMR. Meanwhile we had Christmas and New Year. I could no longer hold my baby grandson because of the stiffness in my shoulders. I tried to go for a walk with friends and struggled a mile with a walking stick, only to collapse and beg for someone to bring a car. I dropped the stick and couldn’t bend to pick it up. My dear friend Pat knelt at my feet to unlace my walking boots, while I wept into her hair. No longer myself, PMR had catapulted into the life of an 80-year-old. By the time the doc had a firm diagnosis I was begging for the steroids.

“Take 20 mg as soon as you get them” she said. “Don’t take them after 6 o clock or you’ll never get a wink of sleep”. Along with the prescription, she gave me another sheet of paper telling me how to come off the steroids by reducing them bit by bit over the next year and a half. It was strange – this stuff was going to make me better but it was poison too. I stood in the pharmacy in Waitrose and took the little red pills there and then. That evening, about half past eight, I stood up to go to the bathroom and felt a strange tingling all through my body. The next morning I leapt out of bed as though nothing had ever been wrong with me.

[Jett]

Whilst on steroids my pain was manageable but I started suffering from vertigo. This stopped when I came off the steroids but now the pain is back. A never ending circle as far as I can see

[marjelill]

I am new to PMR, I stared steroids two weeks ago, see doc again tomorrow.for 2nd time. All these comments have really helped, thank you. I was hoping for a cure. but no, its a case of living with it the best I can.

thank you all Marjorie