POLY MYALGIA RHEUMATICA

I was diagnosed with Fibromyalgia, ME/CFS and then Poly Myalgia Rheumatica after a sudden illness left me with severe arthritis and muscle weakness starting in my upper arms and upper legs. My GP suspected Poly Myalgia Rheumatica and a gave me steroids which immediately relieved the symptoms thus supporting her clinical diagnosis. My SED rate was 27 although earlier tests the year before were 8.

The rheumatologist I eventually saw whilst on a high dose of steroids (so was much more able to move), did not agree that it was Poly Myalgia Rheumatica he said my Sed rate would be about 75. He wacked a steroid injection in my hip before I quite figured out what he was doing. (It did not improve my symptoms).When I asked if my illness could be stress related he said, give up work. Yeah like on 1/5 of his income I could afford to just give in my notice, especially as I had already reduced my hours to cope.

He was the most arrogant and the rudest man I had occasion to talk to in my life. He did not accept my symptoms were all over in every joint and my body felt heavy and weak. He treated me for a sprain in my hip which he said could affect other joints causing Fibromyalgia and that I should come straight of steroids in very large reductions, within just a few weeks. What had I done wrong that made him so cross with me, perhaps it was me being on steroids or was it just his lack of understanding. I didn't ask to go on steroids and now I understand more, I wish to goodness I had not been put on them but I realise it was an honest mistake on behalf of my GP.

The result of even the first reduction of steroids was I had difficulty standing again or walking across a room. My GP said it was possible to have Poly Myalgia Rheumatica and a low SED rate, so she continued treating me on steroids.

It was a year later whilst still struggling to get off steroids, really struggling that a chance course of antibiotics improved my symptoms and led my GP to suspect Lyme Disease. The records showed when I had attended the surgery with Bites, bulls eye rashes and summer flu followed by migrating arthralgias and there had been other cases of Lyme Disease at the surgery confirmed by NHS blood tests.

Two other Rheumatologists had failed to diagnose my illness one insisting I had ME/CFS and the improvement on antibiotics were imaginary! I think not.

I came across an article written by Dr Virginia Sherr All-Overish-ness what a brilliant way to describe how I felt and many of you with ME/CFS or Fibromyalgia or Arthritis or Poly Myalgia Rheumatica will be able to also identify with what she says. (Her website has been hacked so link not available)

'It's the All-overish-ness, Virginia, the All-overish-ness."
A cadre of medical specialists thought his might be a case of Polymyalgia Rheumatica but the usual blood work was normal. With a sense of finality he insisted that I be satisfied with his version of a diagnosis whenever I asked him what was wrong. He always spoke as if I, a physician, certainly should understand as meaningful, this obvious, accurate label. At that time I could not; 10 years later I believe I do understand because I have experienced the All-overish-ness, myself.'
and
'I thought about the All-overish-ness Syndrome again. I had been sure that the new mattress that my husband and I had purchased was defective. It was so firm, I thought, that it made my hips ache. But when the aching spread to my hands and to my ankles, it became more difficult to blame the mattress.'

For years my hips were so painful that even two duvets between myself and the mattress did not enable me to lie on either side. So much in Virginia Sherr's article, I can identify with.

I recently posted my story on a Poly Myalgia Rheumatica patient support website here

I received an interesting reply, the story has not yet been uploaded because of work being done on the website but what the person said was much food for thought.
'What an interesting story. There was a survey done last year in Devon and Cornwall by a rheumatology clinical research Fellow of all people diagnosed with PMR. Less than 50% had PMR!will put your story on the web.'

Why so many different diagnosis and yet one possible cause Lyme Disease?Lyme Disease is ruled out by blood tests that can miss up to 50% of cases that is if you are lucky enough to even get a blood test. Well when you have read much, much more about Lyme disease from www.ilads.org you will start to understand that it can be the cause of many chronic health problems but because of controversies our health departments are only looking at a small part of the available research and missing out on the considerable research that supports ILADS views.

Science Journalist, Author Pamela Weintraube has written some very insightful articles on Lyme Disease links found on my side bar but also she wrote an amazing book Cure Unknown Inside The Lyme Epidemic. This book helps us to understand how the controversies have allowed medicine to be so skewed, that thousands of patients are not being diagnosed properly or receiving timely treatment that can help them, usually in the form of simple but long term antibiotics.

Pam Weintraube also interviewed Dr Virginia Sherr it is in three parts
part I https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-i
part II https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-ii
part III https://www.psychologytoday.com/blog/emerging-diseases/200901/when-the-doctor-gets-sick-the-journey-is-double-edged-part-iii

A local woman I spoke with recently, a nurse, raised her eyebrows when I mentioned Poly Myalgia Rheumatica. She said it is the 'in diagnosis there are so many people now in Surrey being diagnosed with Poly Myalgia Rheumatica'. Well I wonder how many of them too could in fact have Lyme Disease especially as I now know about a dozen other people in my town of Guildford being treated and getting better from Lyme Disease following ILADS guidelines.