Joyce Byrne-Walsh was almost 40 when she watched the care with which a vet examined her arthritic dog and wondered if she could be treated similarly.
She had been managing osteoarthritis since her 30s and the pain had begun to affect her upper body.
“I said to my physiotherapist, ‘my dog’s getting great treatment; who does a human go to?’”
She was sent to a rheumatologist who immediately diagnosed her with fibromyalgia. The syndrome affects an estimated 90,000-180,000 people in Ireland and is more prevalent in women than men. There are no outward signs but symptoms include pain, fatigue and tiredness.
Although there is no known cure for the condition, Joyce, now 59, has learned to live with her symptoms. “I’ve spent four to five years managing my pain and now I’m on top of it, I’m doing okay.”
She uses a range of pharmacological treatments, including opiates, which she does not like taking and CBD oil, a legal, cannabis-based product not recommended by medical professionals but which she says works for her.
‘Pain genius’
“I have a totally clean diet: no gluten, no sugar, no dairy. I don’t feel sorry for myself; that’s a healthy diet. And I don’t drink or smoke.”
She also works regularly with her physiotherapist, who is a “pain genius”, and stays active through her work as a lecturer in marketing at Institute of Technology Tallaght.
I was at a Jools Holland concert and I wanted to dance. I love jazz. There were people 20 years older than me and they were dancing, but I couldn't
Her greatest form of relief is her dog, Millie. “Dogs are very intuitive and the dog knows when the pain increases. I can seize up very easily so walking is key.”
Beyond the physical pain, those with fibromyalgia and other chronic pain conditions face financial, social and mental challenges.
Stigmatisation and the limitations of pain can often take a severe mental toll on sufferers.
“I have grieved for my lost health,” Joyce admits . “I was at a Jools Holland concert and I wanted to dance. I love jazz. There were people 20 years older than me and they were dancing, but I couldn’t.
Isolation in pain
“When that happens, you become very sad and then you internalise and adjust and go on.”
Although pain can be isolating, support networks do exist among other sufferers. In addition to her online forum, Joyce is a member of Chronic Pain Ireland, a patient group.
Joyce would also like to see systematic policy change to normalise and legitimise chronic pain-related conditions. As well as the addition of chronic pain and fibromyalgia to the Health Service Executive’s long-term illnesses scheme and a reduction in waiting lists, Joyce would also like to see greater awareness of her condition.
“I’d like to see more public understanding. Not pity or sympathy, but understanding.”