A CORK woman spoke to The Echo and described what living with a condition that can take up to 10 years to even diagnose is like.
Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body.
It is estimated that it affects nearly one in 20 people across the globe.
Anyone can develop fibromyalgia, although the condition affects more women than men. In most cases, fibromyalgia occurs between 30 and 60 years of age, but it can develop in people of any age, including children and the elderly.
Fibromyalgia can be a difficult condition to diagnose because there is no specific test and the symptoms can be similar to those of other conditions.
Kanturk native Helen Sheehan was diagnosed with the illness in 2011 after suffering from pain for years.
Helen contracted glandular fever when she was around 16 and has been suffering with chronic pain since.
“I feel like I never recovered fully after that,” she told The Echo. “I’d always be going back to my doctor, in pain and exhausted. I found that every September, I’d be in agony.
“It was put down to low iron and my immune system and this went on and on until I got really sick after my first child,” she added. “I was in constant pain and nothing helped; I needed naps during the day to survive.”
Eventually, Helen was referred to a rheumatologist who diagnosed her with fibromyalgia and psoriatic arthritis.
“It does seem to come with another condition and it can take up to 10 years to get diagnosed. We see that in the group, people rarely have just fibromyalgia,” she said.
Helen has been campaigning for greater support for people with the illness since she was diagnosed.
She is an active member of Cork’s Fibromyalgia and Chronic Pain support group which offers support to people with the illness and other chronic pain issues in the region.
She said a lot has changed in terms of awareness since she was diagnosed.
“If you meet people now and say fibromyalgia, they know what it is whereas before not many people would have.
“That’s certainly a positive step but the support for the illness needs to be stepped up as well,” she added.
“We met with Micheál Martin in 2012 and he really listened to our concerns and brought them up nationally but nothing has really changed.”
Helen had to give up work the year after she was diagnosed.
“When the weather is good, I’m fantastic,” she explained. “But when it’s cold or raining, people with fibromyalgia can almost feel it coming because of a deep pain. It’s like having a really, really bad flu.
“Sometimes painkillers can help but other times you flare up and nothing works,” added Helen.
“In that case, I’d need a dose of steroids for a week or two to recover.
“It’s all about learning to manage it effectively and more supports to do that would be amazing.”
While awareness of the illness has increased, Helen said the lack of support for people with the illness is disappointing.
“We see that it’s a constant struggle for people in the area, whether it’s getting appointments or paying for medication,” she explained. “People could be on waiting lists for years for different services, like neurology or pain management, which are all necessary for people with the condition.
“You get one service after waiting for years, then you need another and it’s back on a waiting list,” she added.
“It’s a huge problem that we see in Cork and across Ireland.” Many people with the condition, like Helen, are forced to leave work but find it extremely difficult to access disability support.
“No one seems to get disability support outright for fibromyalgia,” she said. “People seem to need to have another condition with it.
“We see people turned down constantly and these are people who physically cannot work any more,” she added. “They have to go back through the application process again and again and some eventually get it but others don’t. It’s all a huge financial strain as well.”
Helen said members of the group in Cork experience similar issues with medical cards.
“People with chronic pain would need a lot of medication to live, just to survive,” she added. “Sometimes, I wouldn’t even call it living.
“Some don’t get it,” said Helen. “We’ve had people come off medications because they can’t afford it and that’s dangerous because some medications need to be taken away slowly, not cold turkey. That’s shocking; people should be able to access the medication they need.”
While access to medication may be a huge concern, Helen said that support and advice is available through the Cork’s Fibromyalgia and Chronic Pain support group which has a closed Facebook group of more than 650 members.
Helen said: “It’s a patient-led group and it’s a great source of support because we’ve all been through it and can offer advice.”
The group’s Facebook page is available at https://www.facebook.com/groups/Fibromyalgia.chat.and.support.forum/ and Helen is available via email on Helen_sheahan@hotmail.com.