As America declares fibromyalgia is reaching epidemic proportions, more super mums, workaholics, perfectionists are wondering if they have this mystery disease, which doctors fail to recognise. It is known that two percent of the UK population (around two million) have been diagnosed but it is thought a further ten percent are undiagnosed and wondering what ails them.
A recent global fibromyalgia survey supported by the European Network of Fibromyalgia Association revealed that 75 percent of physicians worldwide were failing to recognise the fibromyalgia symptoms due to lack of training in this syndrome. Those suffering with this condition are now offering to talk to groups of doctors and medical students, offering themselves as ‘expert patients’ ready to answer questions about their condition, medication and life style.
Women looking after a family, their home and juggling with a career, with men facing mortgage repossessions, redundancy, crucial career prospects and stress over load are prime targets for this invisible disability.
“There is a total lack of awareness about fibromyalgia. Everyone says fibro what?
It can take years for a diagnosis, which is achieved through a process of elimination. Blood tests show no markers. Scans and x-rays reveal no inflammation where it hurts. After years of pain those suffering with fibromyalgia are glad to have a name for their condition until they realise the pain will never stop,” said Jeanne Hambleton, a National Fibromyalgia Association Leader Against Pain working with the Fibromyalgia Association UK. .
“The lack of government funding for research to find a cure is of great concern to fibromites who live with pain 24/7, suffer stiffness, stumbling, chronic fatigue, sleep disorders, IBS, forget their best friend’s name and lots of other ‘nasties’. Faced with the facts that no-one knows about fibromyalgia and there is no-one for these people in pain to talk to, we felt we had to do something to help this situation in case it reaches epidemic proportions here in the UK,” she said.
Sarah Owen, a yoga teacher, from Chichester and Jeanne Hambleton from the Witterings, UK, have now started a new support group meeting with monthly lunches at The Selsey Tram. Anyone who has or thinks they may have fibromyalgia is welcome to join the lunch guests. The next one is Thursday (September 18).
The big topic for fibromites at present is the Folly Pogs Ball and charity auction on Friday September 12 at the Chichester Park Hotel. This is organised by the support group, to raise money for research. With a motto of “Laughter is the best medicine”, the evening is devoted to mirth, merriment, laughter and fun with a comedy cabaret.
“If you do not go home with your ribs aching, I will need to know the reason why,” said Jeanne Hambleton who is expecting several Page 3 girls to add some interest and glamour to the evening.
“I will be wearing sack cloth and ashes – no point buying a new dress – who will be looking at me,” she laughed.
“Just buying a ticket for the Ball may bring us one step nearer to a cure so we can do our own housework and play with our children like normal people. To support the idea that laughter is the best medicine there is an award winning comedy cabaret Dominic Collins, seen on the Blackpool circuits, charity auction and prizes for fancy dress, the daftest dickie bow and the funniest joke told by a guest with dinner and dancing. Forget the credit crunch and join us for some fun,” she said.