My Story

Jean

Having worked fulltime for 47 years with just a short break to have my daughter, I retired when I was 62 in March 2006. By November of that year I began to get symptoms of PMR, although at the time I didn’t know what was wrong with me. To start with I had severe pain at the base of my skull, and down my neck I was forever buying new pillows and just couldn’t get comfortable at night and had so many sleepless nights at that time. I kept putting this down to the fact that I could have been standing in a draught. However I was also suffering with stiffness throughout my body and had trouble bending down to pick up things at just below floor level. By Christmas 2006 the pain was in my head, neck, shoulders and arms and just getting dressed and undressed was becoming almost impossible. All this time I was convinced that I had a brain tumour (my father had died of a brain tumour when he was 61) and was petrified to go to the doctor. However having spent Christmas at the lowest I have ever been in my life, I went to the doctor and had a blood test between Christmas and New Year. As my symptoms were getting worse and worse; fortunately having private medical insurance cover, I asked my doctor for a letter to see a rheumatologist privately. I duly had an appointment on 17 January 2007 and he immediately diagnosed, along with the blood test results, PMR. Well I had never heard of this illness and it took me quite sometime to get my head around it. I can’t say that any one symptom was worse than another, because in total they all made me feel that my life which, had been very active and busy up to then, was behind me forever. 

For the first 9 months, although I was relatively out of pain, I was forever falling asleep and on each visit to the doctor was made to feel that I was unusual by feeling so exhausted all of the time. I must admit my doctors were and still are absolutely useless with regard to PMR, and it wasn’t until I was doing some research about PMR on the internet, and at the same time contacted Arthritis Care that I was put in touch with the PMR support group in Suffolk, and that was when I started to get some very useful information about PMR and began to feel quite normal. From then on I felt that I wasn’t alone with this dreadful illness, and that I was perfectly normal, and that all the side effects I was suffering with were no different to anyone else who had PMR. From the Suffolk group I then found out about the lovely ladies in the North East of England and Scotland and have been in touch with Pam Hildreth ever since. After reading the stories of other sufferers on the internet, and being a point of contact for people in the South East of England who suffer with PMR I began to take a grip of my own PMR destiny. I have found by changing lots of areas of my life ie gave up smoking, couldn’t face the occasion drink so gave that up altogether. Also I was much more careful about what I ate and where I bought my food. Luckily living in the Horsham area we are fortunate enough to have many outlets of locally produced food which I generally buy. I have also taken supplements since being diagnosed with PMR. First of all I was taking a multi vitamin every day, then I narrowed it down, and now take 2,000 mg of Evening Primrose Oil every day along with a vitamin B complex and a high dose of Vitamin C. All this seems to help me enormously.

At about the same time as PMR hit me, I had committed myself to taking my two grandchildren, aged now 8 and 6, to school four days a week. This meant that I had to get up each morning and be ready by 8.30 am, have a good mile walk to and from school which got my muscles working and by the time I got home the pain had all but subsided. Along with taking my grandchildren to school, additional I have their dog each day. He is a beautiful dog and of course needs to be walked regularly each day. As I gradually felt better and more in control of my life I started doing voluntary work. For the last two years I have worked in our local police office one afternoon a week. I also go into my grandson’s school on a Tuesday morning to read with the children – this I absolutely love. And as I felt stronger I applied to the WRVS and for the last two months I go out on a Friday delivering Meals on Wheels. All of these things have helped me to keep me positive about getting over my illness and gives me a reason to get up each day and get my body working. 

I am now down to 1mg of steroids and can’t wait for when I am completely off of them which should be by around the middle of September. Once I had dropped down to 2½mg of steroids I found I wasn’t so bloated, can now breath when I walk and don’t have to keep stopping to get my breath, and have now dropped a dress size from 16 to 14. Just roll on when I can get back into my size 12s.

I do hope the above will be of assistance to anyone who has just been diagnosed with this dreadful illness. GOOD LUCK EVERYONE.

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