LAST year pop singer Lady Gaga announced the cancellation of the upcoming leg of her world tour due to her ongoing battle with fibromyalgia syndrome.
The news left many people asking themselves: what on earth is fibromyalgia? In the simplest terms, fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used the most. The fatigue ranges from feeling tired, to the exhaustion of a flu-like illness. It may come and go and people can suddenly feel drained of all energy - as if someone just "pulled the plug".
"Once you’ve got it, you’ve got it for life.” explains Dave Williams, 51, whose wife Jackie, 47, suffers from the dehabilitating condition. "You can be in pain for 24 hours and bed-ridden for weeks on end. So many people are now being diagnosed with that the NHS is being swamped but a lot of doctors will not recognise it.
"It's totally destroyed our lives to be honest - all the people we used to know before Jackie's illness we don't see anymore. "Along with the illness comes depression, anxiety and a lot of people lock themselves away and become cut off. We want to make others aware that these people need help.
"Very little is known about the illness and the chemical imbalance between the spinal cord and the brain. Because of this signals are sent to nerve receptors all over the body to open to their maximum state, which in turn leads to excruciating pain all over the body along with many other symptoms."
Jackie, 47, who used to work as a hairdresser, says: “It’s a very isolating illness as being in constant pain every day does get you down.
“I can’t plan anything because I don’t know how I’m going to be and if I do go out I can be stuck in bed for days after.”
Now after leaving his job to care for his bed-bound wife at their home in Connah's Quay, Dave is determined to raise funds and awareness of the condition, as well as a drop in centre for Fibromyalgia sufferers, using his love of rock music to spread the message.
"I've always loved music and a mate of mine offered to play a small fundraising gig for us in Chester to try and raise awareness but we had a phone call from Dave Sharp from The Alarm who'd heard what we were doing because his wife had suffered from fibromyalgia.
"To have someone like him on board was amazing so we needed a bigger venue and booked the Live Rooms and it went really well. From then on it just grew and we've had so many bands contact us wanting to be a part of it.
"We've had stuff donated like a signed painting of legendary nightclub the Hacienda from New Order's Peter Hook and we put on another gig on in Buckley earlier this year."
Earlier this month, Dave organised another gig in Newcastle under Lyme near Stoke to launch the latest fundraiser - a charity CD called Rock Off Fibro featuring tracks from 80s alternative legends Theatre of Hate, Spizzenergi and The Membranes among many others.
"We had a really good night," says Dave. "Kirk Brandon (lead singer with Theatre of Hate) has really helped us with the album and given us an unreleased track and there's a few bands on the CD who've done that. Ian Prowse from the band Amsterdam is another who's been great with us.
"We're getting people in Japan and America getting in touch now wanting to order a copy."
Another keen supporter of Dave's campaign was the late
The CD is now available to order online with details on the 'ROCK OFF FIBRO' Facebook page and via the ROF Bandcamp Page. All the profit goes to Rock off Fibro with the goal of raising enough funds to open the UK's first Fibromyalgia and chronic pain centre, working with local GPs and medical professionals along with Welsh Assembly members and community groups.
"The money is great because we can put it towards the centre which we are trying to create but the main thing for us is just getting the information out there about what we are doing," says Dave.
"If we can get artists like this to come on board with us and give their time for free it shows to sufferers that the backing is there and they don't need to lock themselves away.
"We want to keep building on this and put on more shows and just try and raise the awareness and get the centre open."
For more information on Rock Off Fibro go to www.rockofffibro.bigcartel.com
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