“AT its worst, it is like somebody has pulled your plug out. You have no energy, all you have is pain.”
That is the description given by the organiser of a new support network of the debilitating condition fibromyalgia, which she has suffered from for six years.
Karen Jones, aged 56, recently launched the Bury Fibromyalgia Group to reach out to the 200 or more other sufferers she thinks could be living in the borough.
The incurable illness, which the Fibromyalgia Association UK says is more common and more painful than rheumatoid arthritis, causes severe fatigue and pain all over the body.
For some people, the pain is relentless enough to leave them wheelchair-bound or bedridden.
Other symptoms include un-refreshing sleep, sensitivity to environmental changes and ‘fibro fog’, which causes lack of concentration and memory impairment.
Karen, of Walmersley Road, first found herself affected in December 2008 before an official diagnosis two years later.
Before that she was fit, healthy and active — a successful artist who owned The Attic Art Gallery in Back Rochdale Road, Bury, and regularly raised money for charity.
Karen, who lives alone, now finds it difficult to leave her flat unaided and relies in part on the support of family members.
She said: “First I got weakness in my legs – that was when I first started to realise there was something wrong.
“Then it hit my whole body so I couldn’t keep going any more. It is so difficult to explain what it feels like – you can’t move and it’s not because you don’t want to, you just can’t.
“You can be in bed for weeks at a time. All I hope is that doctors will find a cure one day.”
Research is moving on all the time, and brain specialists have now used scans to confirm someone with fibromyalgia will feel pain more than someone without the condition.
Some health experts think the condition can be brought on by stress, trauma, an accident or a virus. Karen is still uncertain what her trigger was.
She said misconceptions of the illness can fracture families because to the outside world sufferers look “perfectly fine”.
Karen said the first meeting of the Bury Fibromyalgia Group, held earlier this month, was fantastic. She added: “The condition is so isolating, so it was wonderful to see people talking, laughing and hugging.
“I am doing this for Bury. It is for people to support each other and understand the condition, but also have some fun and enjoy life even with the limitations of the illness.”
Monday was designated National Fibromyalgia Awareness Day, when the Fibromyalgia Association UK asked sufferers to wear something purple in honour of their emblem, a purple butterfly.
The next meeting of the Bury Fibromyalgia Group is on June 3 at 12pm.
For more information call Karen on 0161 764 8419, e-mail Karen Jones on firstname.lastname@example.org or go to facebook.com/ groups/BuryFibromyalgia