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Fundraising to pay for biomedical research towards test, cause and cure for fibromyalgia

DUCK30 £3 to 70070 OR DUCK05 £5 to 70070 OR DUCK10 £10 to 70070 OR DUCK20 to 70070

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Working through a diagnosis with someone who has Fibromyalgia. By H Goodwin

The first indication we had that my partner had fibromyalgia was when she had to give up her job as a truck driver in 2005. One day at work she couldn't put her accelerator foot on the floor because of excruciating pain. This pain lasted about six weeks, and all investigations into its cause came back negative. I didn't realise then that this would become the story of the illness - all tests prove negative, no matter what they're for. It's like playing hide-and-seek.

Next, she had to give up her beloved motorbike, because her hands refused to grip the handlebars properly. She couldn't even make a proper fist with her (dominant) left hand. After that, she had to give up stand-up comedy, because, despite months of practice and performance, she just couldn't remember her routine, and would corpse, horribly, on stage. It was painful to watch.

On to 2007, and J was in hospital - again - for suspected pneumonia - again - and this time they decided to barrier nurse her in case she had TB. Of course, all the standard tests came back negative, and the specialist burst in through the door to announce 'you can take that mask off now, there's nothing wrong with you!' to the grey, shaking, sweating, tearful woman in the bed.

I'm not ashamed to say I totally lost it at this point, demanding the specialist take her nose out of her clip-board and actually LOOK AT HER PATIENT.  She did. She finally examined J properly, and listened to the case history. She wasn't backward in coming forward with what she thought might be causing this weird constellation of symptoms: she pretty much said, 'I think this is HIV'. It was the first out-of-the-box guess we'd had, and probably the most creative, in nearly three years. At least she believed J really was ill.

When the HIV test came back negative, she referred us to some new specialists: a neurologist, a rheumatologist, an immunologist and an ENT (ear nose and throat specialist). After all their tests had come back negative (of course) the immunologist began asking strange questions that seemed to be more about J's mental health history than anything that was going on with her body. J was polite, to a point, but eventually pushed back. It was evident he had an idea what was going on, but he didn't tell us his conclusion in the consultation. Instead, a letter arrived a week or so later with this strange word: fibromyalgia.

Wikipedia is always my first stop, so we read up. Reading, learning, absorbing all that is fibromyalgia took us weeks. Our local GP referred J to a pain clinic, where, once again, the emphasis seemed to be on mental health. We were baffled. Fibromyalgia is so evidently a biomedical condition, we wondered how on earth sensible medical professionals were making this link.  

This implication that mental health is somehow behind fibro is something we've learned to navigate. The mental health theory is being pushed by by the American insurance industry (as they can exclude claims for mental health conditions, so saving a lot of money). There are medical and scientific professionals both in the US and the UK they can afford to 'buy' as spokespeople, so the mental health message is getting a lot of airtime.

Fibromyalgia is even defined in the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) as a 'somatoform disorder' - ie, as a mental health condition. As our NHS gets sold off, and more insurance companies get into the market here, you can expect more of this.

One other take-away from the pain management clinic. The pain specialist warned us, don't seek out patient support groups. They're professional sufferers. We call them the 'splints and sticks brigade. They'll only bring you down'.

So, for over a year, we didn't look for support groups, until eventually, in desperation from the isolation fibromyalgia was bringing J, we eventually reached out and made contact with some patients online. What a difference. Finally, we were talking to people who ' spoke our language' - understood what was going on with J's body; understood the battle with medical professionals and the DWP, and even had some great black humour about the whole situation.

Now we would say to anyone new to fibromyalgia, don't wait to join a patient group. You'll generally learn more from other patients than from the NHS (wonderful though that institution is). You'll feel less alone, you'll have friendly, sympathetic support to help you deal with your emotions, and you'll have people to exchange hints, tips and information with.

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