Diagnosing Fibromyalgia

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Since starting the blog, I have been asked a number of times how is Fibromyalgia diagnosed. I think when it comes to getting answers, this is one of the most frustrating parts of this condition as invariably all the diagnostic tests come back normal, nothing to see…

It was back in October, 1989 that I first headed off to see my GP, at just 25 years old, a new bride and working my dream job (hence the picture above). I was tired – so tired!! It wasn’t the tiredness that comes with the end of a busy day checking in passengers at the airport, this was different. This was fatigue and it left me collapsing into a chair after my shift and asleep very soon after. They did all the usual tests, thyroid, iron levels but of course they all came back normal.

Very soon after, the stomach pains kicked in and once again more trips and more tests. IBS was diagnosed with advice to drink more fruit juice, eat more fibre and get more exercise. I tried, oh how I tried. I did everything I was told, the added fibre left me bloated and increased my stomach pain and the exercise exhausted me.

Does this all sound familiar??

The doctors hadn’t got a clue, they banded around words like ME and yuppy flu (very fashionable in the early 90’s) but I had no diagnosis. This went on for the next 11 years, with loads of testing this and testing that and retesting……nothing. Finally, after changing doctors in 2000, I heard the word Fibromyalgia for the first time. I cried!! I was believed and I had been right all along. The pain and fatigue I had felt was real.

So how did my diagnosis come about after so many years of waiting?

The truth was that I had all the tests…..again. They all came back normal……again.The doctor then after getting all the reports back in, got up out of his seat and proceeded to apply pressure to various areas of my body. I winced in pain and there it was – the answer. He knew then what it was and delivered his verdict.

I was thrilled, I had a name, I had a diagnosis and I had validation. I wasn’t going mad, all these years, a son later and a broken marriage and all this time I was right. There was something wrong – I knew it.

The tears flowed as I asked him how we put things right – we can’t was his answer. There is no cure.

So since the year 2000, how has diagnosing Fibromyalgia changed, is there a blood test, an X-ray or a scan that can give us our answers quickly – in short the answer is no!!

Fibromyalgia in most cases is still diagnosed by a process of elimination and the tried and trusted trigger point test.

NHS UK, determines the criteria as:

  • You either have severe pain in three to six different areas of your body, or you have milder pain in seven or more different areas
  • Your symptoms have stayed at a similar level for at least for at least three months
  • No other reason for your symptoms have been found
  • The extent of the pain is assessed by applying gentle pressure to certain “tender points” where any pain is likely to be at its worst. They will normally look for a reaction from 13 of the 18 trigger points.
Image courtesy of Medicinenet.com

Image courtesy of Medicinenet.com

It is important to remember, that is possible to have other conditions alongside Fibromyalgia and also to have conditions that are totally unrelated. Therefore, it is important to investigate any changes to your health and pain levels, don’t just assume it is part and parcel. I see so many sufferers blaming a broken nail on this condition (sorry but it’s true) when the reality exists that it could be something else entirely and more importantly, something more serious than Fibromyalgia.

Getting a diagnosis of Fibromyalgia is a blessing and a curse. It won’t kill us but the reality is that we are stuck with it and everything that comes along with it. We have to learn what our body responds to positively and this takes time. We have to get used to people doubting us or not taking us seriously, we have to adapt and learn to listen to our bodies and treat it with love and care. We use words like flare and pacing, we have to learn to say no and we have to be gentle with ourselves.

Fibromyalgia isn’t the end of the world – really it isn’t – but it is a life changer. It turns it’s sufferers into fighters, the alternative is to give up and give in. That is not me – what about you?

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