Few people have heard of the painful muscle condition fibromyalgia but it blights the lives of hundreds of thousands. Health Editor Barry Nelson reports.

ON the inside you are feeling terrible. Aches and pains wrack your body and just getting out of bed in the morning can be struggle. But on the outside you look perfectly normal - nobody would know what you are going through.

That's the situation of hundreds of thousands of people in Britain who suffer from a relatively common muscular condition called fibromyalgia syndrome, or FMS for short.

Ask anyone in the street whether they have heard of this distressing and life-changing condition and the chances are they will look puzzled and shake their heads. Many family doctors find it fiendishly difficult to diagnose and it can be confused with other conditions such as myalgic encephalomyelitis, or ME.

The medical name is off-putting and doesn't tell you much about what sufferers go through. But for those in the know, the name says everything. The 'fibro' part refers to fibrous tissues such as ligaments and tendons, the 'my' part is about muscles and 'algia' is about the most important part of FMS - pain.

The national charity which represents people with fibromyalgia, the Fibromyalgia Association UK, reckons that between two and five per cent of the population of Britain is affected by the condition. Some American studies have suggested it could be as high as ten per cent - or one in ten citizens - in the United States. It often remains undiagnosed for years.

In the case of Diane Leak from Darlington, the symptoms of FMS were going on against the background of other serious health problems.

After undergoing two gruelling hip replacement operations at Darlington Memorial Hospital, her surgeon became suspicious about her ongoing problems with severe muscular pain.

At that stage Diane, 61, was getting desperate, thinking that her problem was possibly all in the mind. "I actually thought I was going doolally," she recalls.

Her surgeon's decision to refer her to a colleague, a consultant rheumatologist, was the best thing that could have happened to Diane. The rheumatologist suspected it could be fibromyalgia and arranged for her to have an MRI scan. The scan results indicated that Diane definitely had fibromyalgia.

"That was about six years ago but I think I had it for quite a lot of years before that," says Diane, who is grateful that she at least knows what is wrong with her.

Unfortunately, knowing you have FMS is not reassuring. A cursory look at the Fibromyalgia Association UK website will tell you the grim news that it is incurable and difficult to treat.

Diane describes the pains from FMS as "worse than toothache" and the horrible thing is that when you wake up in the morning, you don't know where the pain will be.

"Of course, there are muscles all over your body and every one of them can be affected. The pain can be horrendous," says Diane, who admits that on bad days, she can't even get out of bed.

Apart from the continuous background pain, the condition can also severely disrupt sleep, contributing to concentration and memory loss.

Other common symptoms are depression, anxiety and irritable bowel syndrome.

For some people, the symptoms are so severe, their thoughts turn to taking their own lives. "Some people have become suicidal because of what they are going through," says Diane.

The Fibromyalgia Association UK recommends that a combination of heat, rest, exercise and stress reduction seems to be the best way for people with FMS to manage their condition.

Some FMS sufferers also respond to drugs used to treat depression, in some cases finding their pain reduced and sleeping better.

It was shortly after she was diagnosed with FMS that Diane started thinking about setting up a support group for sufferers in the Darlington area. The idea came from a nurse who knew that there was a need for such a group.

"I was pretty anxious because I had never done anything like this before. I thought only one or two people would turn up," recalls Diane.

But 29 came to the first meeting at the hospital social club and now she is in touch with about 70 people. The youngest is a 14-year-old and the oldest is 82, but most are over 40.

This week is the first anniversary of the Darlington support group and Diane is pleased that she has been able to do something for her fellow sufferers.

One of the most important things the group can do is to allow sufferers to share their experiences and swap stories about ways of living with the condition and managing the ever-present pain.

"My consultant warned me that there was nothing much he could do. He referred me to the pain clinic at the Memorial Hospital and they have been very helpful," says Diane, who also runs a helpline from her home.

Acupuncture helped in the early stages, although the beneficial effects appear to be wearing off. She is also experimenting with Bach flower remedies and Reiki, an increasingly popular form of healing massage developed in the Far East.

Apart from swapping stories, the group has led to a number of firm friendships, with some people going on holiday together. Its first afternoon meeting will take place at the Friends Meeting House in Skinnergate, Darlington, on Thursday, March 3 at 2pm.

Group member Pam Dixon, 50, reckons she must have had FMS for about 13 years before she was diagnosed. "I was a part-time special needs teacher at a primary school. I struggled on for a long time until I was diagnosed with fibromyalgia in June 2003," says Pam, who reluctantly gave up her job in June the following year. To make matters worse, the mother-of-three also has arthritis.

Pam says she has found the group a real boon. "For me personally it has been very helpful." Unlike some FMS patients, she has found her own GP extremely co-operative. "My doctor has been really good and pointed me towards the expert patient programme, which was excellent," she says. Recently, Pam has discovered relaxation tapes which help her to manage her pain to some extent.

Yvonne Hammond is a recent addition to the group. She says she did not have a good experience with the NHS, relying on her former employer's occupational health team to come up with the fibromyalgia diagnosis. Even then, one therapist thought she actually was showing symptoms of ME rather than FMS.

Because of her chronic illness, the 47-year-old was made redundant from her job as a team coach at Orange in Darlington. Yvonne, a mother-of-two, has been very impressed with the group.

"The support I have had from the girls has been very good. It is a fantastic group."

Diane is hopeful that medical advances will eventually help fibromyalgia sufferers. Until then, she will continue to run the Darlington group. "I feel that I am doing something for other people. If I can be at the end of a phone for them, that is good enough for me," she says.

* For more information about FMS, visit www.fibromyalgia-association.org or ring the national helpline on 0870 220 1232. The Darlington and district helpline is on (01325) 461728, and the North-East regional contact number is 0191-5130015.