"I don't think I've ever gotten up without being in pain," said Adrienne Dempsey, mother of singer/songwriter Damien Dempsey who was diagnosed with fibromyalgia 15 years ago.
She was speaking at a press conference calling for State support for people with the condition, which causes widespread pain and fatigue.
The campaigners say there is a “misunderstanding” about the condition and are frustrated and disillusioned with the resources available.
They are also seeking the development of a multidisciplinary treatment plan and training for medical practitioners in how to deal with the disorder.
There are no outward signs of fibromyalgia but symptoms include severe pain, fatigue and stiffness. The condition is estimated to affect between 90,000 and 180,000 people in Ireland. It tends to be seen predominantly in women but can occur in men, and in all age groups.
Ms Dempsey said she lives with chronic pain. “I’ve tried everything that’s known to man to help it. I’m at my wits’ end.
“I don’t think I’ve ever gotten up without being in pain. My GP is brilliant ... but nobody seems to know enough about it.”
Ms Dempsey said she got some relief when she was abroad and got a prescription for medicinal cannabis.
“I would love to see that being allowed for particular patients,” she said. “Chronic pain is an awful thing to have to live with... My whole life has been put on hold because of this disease that nobody seems to be able to give me any real answers or knowledge.”
The press conference was organised by People Before Profit TD Gino Kenny in relation to fibromyalgia and myagic encephalomyelitis (ME).
The Dublin Mid West TD said there was a misunderstanding and lack of awareness of both conditions. Fibromyalgia needed to be “resourced and recognised” and the people living with the condition “have to be taken seriously”.
Marissa Appel (25), a student at Technological University Dublin, said she was diagnosed with the condition aged 17.
“For someone who is young like me, it can be incredibly difficult to explain to friends that you have to cancel plans again because you’re in too much pain. It can be incredibly difficult to explain to teachers and lecturers that you’ve missed a class or the exam because you were in so much pain you physically couldn’t move to get out of bed,” she said.
“People judge you because they don’t see anything wrong with you. I’m constantly met with comments such as ‘you’re too young to be tired’ and I cannot answer back because the pain and exhaustion is so overwhelming it drains every cell in my body.”
She added: “We need the support and understanding of people and the Government to recognise that what we are going through will not go away, that at the moment there is no cure and what we are going through is long term.”