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'Pain of my illness was sobad I crawled across the floor to put the dinner on'.

Byline: KAREN HAMBRIDGE reports.

HEALTH: The hidden condition that brought one woman years of misery was finally diagnosed as fibromyalgia - now she fears one of her young granddaughters is showing symptoms CAN you imagine being crippled with constant pain for years and yet never being diagnosed? That's the horrific fate that thousands suffer before being told they have fibromyalgia. And as the condition means sufferers show no physical sign of illness, it leads to feelings of frustration and isolation. But a new local support group aims to change all of that.

JANET FARR has been in constant pain for more than 30 years.

It has limited her ability to work and she is unable to do even simple tasks like housework or carrying shopping.

And one of her biggest regrets is that she can't pick up or look after her grandchildren.

"Looking back it's amazing I coped," said Janet, who worked part-time for the NHS and has five children and 22 grandchildren.

"I remember crawling across the floor to put the kids' dinner on, I was in so much pain I couldn't stand.

"But I suppose you have to get on with things. You find ways of coping because you have to."

Yet to look at her Janet is the picture of health and certainly appears far younger than her 68 years.

It is only her halting gait and reliance on a stick which gives the game away.

For Janet suffers from osteoarthritis and fibromyalgia, an incurable condition which causes pain and fatigue.

Although diagnosed with osteoarthritis in her 30s she was not officially diagnosed with fibromyalgia until last year.

Looking back she believes she was already suffering from fibromyalgia when the osteoarthritis was diagnosed.

"I had spinal surgery for the osteoarthritis when I was 40 but the pain was still there," said Janet, who is married to John, 67, and lives in Upper Stoke, Coventry.

"The problem was no one seemed to be able to find out what was wrong with me and I think that is a common problem with fibromyalgia sufferers.

"I went to see a neurologist because I was getting dreadful headaches but he couldn't identify a cause, then I saw a heart specialist because of the pains in my chest but again there didn't seem a reason for it.

"So you get passed around without anyone being able to diagnose the problem."

For Janet the fibromyalgia made her feel like she'd been bashed all over with a cricket bat.

Sometimes it was all she could do to drag herself out of bed, aching from head to toe.

As the years passed and the agony continued Janet, like many fibromyalgia sufferers began to doubt herself.

"You start to wonder whether there is anything wrong with you, whether it might be all in your head.

"And because people can't see the fibromyalgia physically and because you look well they don't believe there's anything wrong with you.

"People just don't understand, it is very frustrating. I know from talking to other sufferers that it can take years to be diag-nosed and I'm sure there are people outthere with fibromyalgia who haven't been diagnosed and don't even know they have got it.

"A lot of the women I have spoken to cried when the diagnosis came. I could actually give the illness a name instead of wondering what was wrong with me." Janet was eventually diagnosed last year and has since been on a physiotherapy course at the new University Hospital.

It was thanks to the course that Janetdecided to set up a local support group.

Having met many others in the same position as herself she realised a group where sufferers could discuss their problems and exchange ideas was vitally needed. "The course was great but when it came toan end, it was a case of 'now what'. "I met a lot of younger people as it seems sufferers are being diagnosed much sooner these days and I thought it would be useful to set up a support group because I have the life experience of fibromyalgia." Janet is seeking interest from fellow sufferers and hopes to hold the first meeting to wards the end of September. "Fibromyalgia is a very difficult illness to live with. It affects all sorts of things. Evensimple, everyday tasks like housework area nightmare. Now one of my granddaughters does it for me. "You have to have a very positive attitude when you have fibromyalgia. You have to keep going and maybe instead of doing something physical go in another direction,

I did counselling. "I take painkillers but only when the painis excruciating as there is a danger of becoming addicted to them. "I can stand a lot of pain, but with fibromyalgia I have to. I have to pace myself. Every morning I think to myself, now how do I feel today, what can I do. "My husband John is recovering fromopen-heart surgery and he has said to mehe believes I have experienced more painthan he has. "But because he has had an operation and bears a physical scar people find it easy to be concerned about his wellbeing. "People with fibromyalgia don't want sympathy, we just want others to understand what we go through."

Fact File - FIBROMYALGIA

FIBROMYALGIA is a condition which causes widespread pain and severe fatigue. It is defined as widespread pain for at least three months experienced in at least 11 points around the body.

MOST people have tender points around the body and if enough pressure is applied most people will find it uncomfortable but in people with fibromyalgia there is a change in the threshold at which pressure cause pain and many of these points can become extremely tender.

THE pain is most often experienced as aching, stiffness and tiredness in the muscles around the joints.

IT may feel worse in the morning or as the day goes on or with activity and may affect one part of the body or several different areas.

SUFFERERS may have a general lack of energy or muscular fatigue or loss of stamina which can make everyday tasks difficult or impossible.

FOR more information on the support group phone 0845 345 2605. The Fibromyalgia Association UK can be contacted by logging on to www.fibromyalgia-associationuk.org or phone 0870 220 1232 (10am-4pm Monday to Friday).

CAPTION(S):

DS030807FARR1; FIBROMYALGIA SUFFERER... Janet Farr, who is setting up a support group for people with fibromyalgia, pictured with her granddaughter Danielle Wells and (left) with her husband John and her other granddaughter Charlotte Fletcher (back). DS030807FARR3
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Title Annotation:Features
Publication:Coventry Evening Telegraph (England)
Date:Aug 16, 2007
Words:1093
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