Saturday, 20 February 2010

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.

'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 here

Joining Wellsphere recently has enabled me to find so many more of Dr Sherr's articles http://www.wellsphere.com/dr-virginia-s/92564/posts

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.

5 comments:

  1. Totally fascinating! As someone who is one week into Doxycycline treatment after virtually arm-twisting the Gp for treatment...I speak to my sister who has been fighting polymyalgia for several years. Or has she? She is on prednisalone which certainly helps the symptoms but could it really be Lyme? I was thinking maybe there was a filial genetic disposition to Polymyalgia and doubting my own symptoms...however the Doxy has given improvements even in one week. Incidentally I have had many tick attacks as a nature photographer and only recently looked beyong the tick removal to find out the disease implications.
    Jonathan Avery

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  2. Hi Jonathan
    I am pleased to hear you are lyme aware sufficient to be on Doxy but do check out the Burrascano Guidelines,doses are much higher and longer than NHS would give. Many patients following NHS dosages can still go on to get full blown lyme. A neighbour I spoke with only a month ago now has chronic lyme, she was treated with the usual NHS dosage a year ago unsuccessfully.

    However not all ticks carry Lyme but parts of Scotland are known endemic areas.

    I contacted a PMR website some time ago and e mailed my experience, the person who started the forum e mailed back and was saying that research done in the South West not so long ago found that 1/3 of patients with PMR diagnosis did not infact have PMR.

    Sadly steroids for PMR are rather harmfull if you happen to be suffering with a bacterial infection.

    The more you read about Lyme the more you will find that our doctors are only fed what the HPA 'experts' want them to know and there is very much more research which contradicts the HPA 'experts' opinions although as you have found it is difficult to get doctors to treat patients for Lyme disease.

    Not everyone with Lyme develops chronic symptoms there is a very broad spectrum of illness but many with chronic lyme have been found to have a specific genetic factor, clearly siblings are likely to have the same genetic factor.

    I enjoyed looking at your photos and pleased to hear how much you are enjoying your new career. Since my return to good health I have enjoyed my garden and started to blog about it (link on the right), which has been great fun keeping a photographic record of the garden. Yes just snaps but fun all the same.

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  3. http://www.pmrandgca.org.uk/node/35 Good to see they shared my story of mis diagnosis on their website

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  4. Dear Joanne
    Thanks for posting the link to this story on our facebook page. Yet more evidence that PMR is notoriously difficult to diagnose, and how this leads to 'false positives' as well as doctors telling people they can't possibly have PMR because the seds are too low. The ESR rate is unreliable as a diagnostic indicator. Would you be interested in us featuring your experiences in our newsletter?
    yours
    Kate, Chair, PMRGCAuk

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    1. Hi Kate I would be pleased for you to mention my story in your news letter - there will be others who may well benefit. My contact e mail is in my profile or through Facebook if you want to get hold of me.

      A more detailed version of my story is in my right hand side bar.

      Most importantly because there is a huge controversy over diagnosis and treatment of Lyme Disease and the true figures are unknown in the UK but likely to be far higher than most doctors think ( recent research posted on my blog )would you include details of http://www.lymediseaseaction.org.uk/

      Testing can miss up to 50% of cases so it must be a clinical diagnosis and some people like myself are led to it because of a beneficial affect from taking antibiotics ( however there can also after a few days be a bad affect caused by a herx reaction which doctors and patients can mistake as an allergy to the antibiotics)

      Nothing is simple where chronic illness is concerned.

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