Today is Wednesday 18th October 2017.
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PMR - There is light at the end of the tunnel!

It was early September 2007. I was on a round trip, twelve day cruise on board the ‘Polarlys’ (one of the many ships of the Hurtigruten fleet) from Bergen up to Kirkenes, in the north of Norway, then back down to Bergen. The scenery was spectacular…towering mountains, rushing waterfalls, small, neat wooden painted houses and villages perched in lonely locations…. beautiful towns with thriving modern communities rich in history and culture. This was the Norway I knew and loved.

As the journey progressed however, I was increasingly puzzled by a pain that wouldn’t go away…. It was as if someone had kicked me very hard in my upper legs, I was finding myself feeling stiff when I stood up, and taking a few steps before it would ease up slightly, enough for me to walk normally. By the time I had returned to stay with family in Southern Norway, I was feeling stiff and sore in my hips and generally sore all over.

On return to Scotland, I visited my GP, who, after several visits and tests and initial steroid treatment, referred me to the nearest Rheumatology department. I did not respond to the steroid treatment as expected, I was still in a lot of pain and discomfort, even when on a high dose.

After a meeting which involved several different specialist doctors in the hospital, which attempted to rule out other medical possibilities, it was agreed I had PMR but was atypical. I was 57 years old. I had been very fit, going to the gym three times a week, and swimming too. I enjoyed activity.

The next three years were difficult. I tried to carry on as normal, I looked fine, but was very restricted and limited in what I could achieve. Every day was bad to start with….. movement was sore, my muscles ached… I sometimes suddenly felt as if a plug had been pulled, I had no energy. I had to sit at my computer after breakfast, it offered me a slight easing of the aching muscles - and a rest. As the first year progressed, I realised I had begun to have the odd better day, when I could achieve more. I learned very quickly that to try to achieve too much on these good days was not a good idea, I would pay the price by being in more pain and tired the next day. Gradually, very gradually, the good days increased in frequency and the steroid dose reduced a little.

About this time I began to attend the Tayside PMR & GCA Support Group, which met once a month in Dundee. This offered me an opportunity to share my difficulties and learn from others. Talks were given on a regular basis by a variety of professionals, which also added to my understanding of my situation. The group later grew to become the registered charity PMR- GCA Scotland.

The following few years saw me coping with the pain moving around my muscles and joints a few days here…. another hour there….. but the good days were increasing, until I realised I had more good than bad. I had a few relapses, despite taking great care with my steroid reduction programme.

Over the last eighteen months, I have almost returned to a normal lifestyle, but I have become very aware of my physical abilities. I try not to become too overtired. I can now swim freestyle, without my arms and shoulders hurting. I can lift and move equipment around my garden again.
I took up golf again last year, after a lapse of more than thirty years. I have had many lessons and have practiced hard at the local golf ranges. This year I joined a local club, and play nine holes twice a week…. A few weeks ago I managed eighteen holes on a short course…. This was unimaginable just a few years ago… at one point in the early days I thought I was going to become wheelchair bound, I was so restricted in my movements.

I am still working on reducing the steroids, but my dose is minimal now. Believe me, there is light at the end of the tunnel!

AMJ