June's Story

I was 60 when I was first diagnosed with polymyalgia rheumatica (PMR) and I am now 78. It took about 12 months to get the diagnosis, but after I decided to see a new doctor they looked at my symptoms (walking problems, generally feeling unwell and very limited movement in my arms and shoulders) and made the diagnosis. In addition to the above, driving had become very difficult as my left arm did not want to move. I had to drive in second gear waiting for it to start working again. Showering, dressing and any movements using my arms or shoulders were very restricted.

The initial large dose of prednisolone (a corticosteroid) was very effective and it only took a few days for a lot of symptoms to improve. It then took over two years to then come off the steroids.

Over time I have had many painkillers, but now I only use Butec patches (a transdermal painkilling patch) and co-codemol. The most help I have had for my pain comes from using a heat pad, a hot water bottle or a massage.

In the years since my diagnosis I have had many PMR flares, as well as bursitis in my hips and knees, for which I have had steroid injections. It was also discovered that I had lost cartilage from my lower back which was impeding my walking and causing pain in my back and legs. I have not been given treatment for this and prognosis is not good. I have found that you cannot walk through pain because it can lead to fatigue which is a very unpleasant experience.

For the past two years I have been having treatment at the hospital for my shoulders. This has included many steroid injections with mixed results. I was offered rotor cuff operations on both shoulders with the proviso that these may not help - I declined.

My reason for joining Cloudy was that I have always thought the weather influences how you feel; low pressure seems to increase stiffness, pain and reduce walking in summer as well as winter. I was also interested to see how other people faired with osteoarthritis.

I was called in by my doctor last year after a routine blood test and I was asked if I would consider going on statins. I had failed a test that showed I would probably have a stroke or heart attack in the next 10 years due to my family history and the PMR. This was quite a shock and so I tried statins, but had to give it up after a week as it caused me very painful legs. I did agree to lose weight though, and so far I have lost 18 lbs.

It is very hard for me to work out whether the pain that I have now is related to the PMR or not. Any health professionals I have come into contact with seem very reluctant to discuss PMR. Especially as I do not have a raised erythrocyte sedimentation rate (ESR) - this is a blood test that can reveal inflammatory activity in your body.

Today my daily life is affected by limited walking, limited use of my arms and fatigue. I live on the west coast of Lancashire with a moderate climate but it is quite windy at times.

Do you have a pain story that you would like to tell ? if so, email cloudypain@manchester.ac.uk and we will help you to pull your experiences together. Stories can be completely anonymous if preferred.