FIBROMYALGIA HAS AN interesting nickname: the invisible illness.
Most people with the condition look completely healthy, but are in near-constant pain.
Last month it was announced that fibromyalgia would be recognised as a long-term condition by health professionals in Northern Ireland.
The Patient and Client Council there has been lobbying for this for years and recently released a report on the topic called A Hidden Condition.
As a result of the move, dedicated services to help people with fibromyalgia are to be set up in the north.
Eleanor O’Farrell (39) is hoping the same thing will happen in the Republic. She had symptoms for close to 20 years before she was diagnosed with fibromyalgia.
Eleanor had gone to her GP numerous times, but they were unable to find out what was wrong. She doesn’t blame them for this, noting: “As it is one of those invisible illnesses, it’s very hard to diagnose.
I felt like a hypochondriac. The symptoms are so weird and varied, you feel like you’re making it up.
Three years ago she had to take action, recalling: “After coming home from a holiday in Italy my legs got so painful I could barely walk.”
Her symptoms were so bad she had to take six months off work.
Eleanor went to a different GP who sent her for a blood test, which showed a raised antinuclear antibody (ANA) level and she was referred to a rheumatologist.
She says she was then diagnosed with fibromyalgia, but told “we don’t really understand [it]“.
Eleanor believes if the condition was added to the long-term illness scheme (LTI scheme) it would be taken more seriously and more research could be done into it.
The number of people who suffer from fibromyalgia in Ireland is not known but more than 10 million people in Europe have been diagnosed with it. The condition is thought to affect 1-3% of the global population. It’s much more common among women than men.
As fibromyalgia has symptoms that could be put down to other issues, it is often misdiagnosed.
Long-term illness scheme
Gemma Flood, a member of the Fibromyalgia Awareness and Advocacy Forum, previously spoke to TheJournal.ie about efforts to have the condition added to Ireland’s LTI scheme and ensure sufferers receive a medical card or GP visit card.
Fibromyaglia Sufferers in Ireland made a submission to the Joint Oireachtas Health Committee about the condition on 6 December 2012.
When the issue was raised in the Dáil in May, Health Minister Simon Harris said: “Fibromyalgia is not one of the 16 conditions covered under the long-term illness scheme. There are no plans to extend the list of conditions covered by the LTI scheme.”
During the week a spokesperson for the Department of Health told us this position has not changed, despite developments in Northern Ireland.
Eleanor is on two different types of medication – both antidepressants. In the morning she takes cymbalta and at night she takes amitriptyline.
She says the latter sends her into REM sleep as “you don’t get into stage four REM sleep like everyone else when you have fibromyalgia so your muscles don’t repair overnight”.
There’s never a minute in the day I don’t feel pain somewhere. I am always in some form of pain, but it might not be severe. I get muscle aches or shooting pains.
“On a bad day I wake up and just feel absolutely exhausted. I tire very easily. I can be in a huge amount of pain, on a bad day I can barely walk.”
‘I get so tired’
Eleanor, who lives in Bray in Co Wicklow, praised her “amazing” husband Ronan for supporting her, especially on those very tough days. The couple have a two-year-old daughter, Eliza.
“I often don’t have the energy to play with her… I feel likes she’s missing out.
“I get so tired I don’t have the physical strength in my arms to lift her. Getting her in and out of car is very difficult,” Eleanor notes, saying that if they have to go shopping she tries to “make sure we only got one shop so I only have to lift her in and out of car once … It’s exhausting if we have to go to two or three places”.
Eleanor says most of the symptoms of fibromyalgia faded while she was pregnant, but came back a few months after Eliza was born.
The HSE notes there are many symptoms of fibromyalgia and they tend to vary from person to person.
Factors that influence symptoms include changes in the weather, stress levels and how physically active you are.
The main symptoms of fibromyalgia are pain, extreme sensitivity, fatigue, trouble sleeping, headaches, irritable bowel syndrome (IBS) and cognitive problems caused by so-called ‘fibro-fog’ which can cause trouble remembering and learning new things, problems with attention and concentration, and slowed or confused speech.
‘Taking over my life’
Eleanor now works three days a week. She says she feels as though the condition is taking over her life as she often has such low energy and can’t do certain things like take the stairs.
Because you can’t see it, because I look fine, people say ‘You’d never think there’s anything wrong with you, you look so well, you look so happy’. I feel like I’m talking about it all the time, like it’s taking over my life … I’m sick to death of going on about it.
Eleanor has found solace in online support groups, but says people with the condition deserve better.
“There are thousands of people with this disease and yet nobody knows about it because it is invisible. This needs to be addressed.”
More information about fibromyalgia can be found on FibroIreland.com or via the Fibromyalgia Awareness and Advocacy Forum Ireland group on Facebook.
This article was originally published on 16 October 2016
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