COLEEN Flynn will never have a pain-free day in the rest of her life.
The 73-year-old South Grafton resident has a mystery condition called fibromyalgia, which afflicts otherwise healthy people with severe pain and other unpleasant symptoms.
On Friday the news of a seminar for fibromyalgia sufferers attracted about 200 people from the Mid North Coast, Northern Rivers and Tablelands and south-east Queensland to the South Grafton Ex-Servicemen's Club.
As Ms Flynn noted in her welcoming address, many of those people came out of desperation after years of enduring the disease without anyone understanding what was happening to them.
"A lot of people have told me the best thing about the seminar was looking around them and seeing 200 people just like them," she said.
"They suddenly knew they weren't alone and that made them feel better.
"We had about 60 phone calls from people who would have liked to come but they were either not well enough or the distance was too great."
Ms Flynn said people with fibromyalgia could not expect to recover.
"You have to accept that is how you are and learn to get on with your life," she said.
The symptoms don't stop at pain, with chronic fatigue, hot and cold flushes and tingling sensations adding to the misery.
Medical studies have not cracked the code of what causes the disease, but the finger seems to be pointing towards stress as a major contributor.
Coleen's story supports this hypothesis.
"When I was six years old my dad was killed in a tragic accident," she said in her address to the seminar.
"From a warm, comfortable family with lots of love, I was sent to a convent for 12 months, then to live with an aunt for another 12 months - very traumatic times.
"At eight years old I had my first fibromyalgia attack. Of course it wasn't called fibromyalgia then."
Coleen said every stressful event in her life, including a desperately ill child and the death of a husband due to a lightning strike, resulted in an attack.
"I would go to my doctor, physio, chiropractor, acupuncturist or naturopath and they would bring it under control," she said.
"Then I would get on with my life, happy and busy until the next upset."
But in the mid-1990s a diagnosis with cancer that resulted in a double mastectomy brought on pain all over her body that became unbearable.
"The soles of my feet burn, the skin on top stings and my heels feel like they are being cut with a razor blade," she said.
"The pain is in my face; my eye sockets and cheekbones and jawbones throb. My ribs are almost unbearable to touch.
"I have trouble with water splashing on me and I am very sensitive to the slightest breeze and strong sunlight.
"A change in the weather can increase my pain."
Three-and-a-half years searching for an answer led her to Dr Hanish Bagga at the Mid North Coast Arthritis Clinic, who was finally able to come up with a diagnosis: fibromyalgia.
"I was so excited it had a name," she said.
"He said other people had it. I was not alone. I was beside myself I was so excited."
She said the treatment she received dropped her level of pain from around nine to a five or six.
"It was because of my desperation to find others with fibromy- algia that Dr Bagga suggested we start our support group," Ms Flynn said.
The Clarence Valley Fibromyalgia Support Group has about 12 regular members.
It meets on the third Wednesday of each month between 9am-noon at Aruma, 175 Queen St, Grafton.
Update your news preferences and get the latest news delivered to your inbox.