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Fibromyalgia – A misunderstood condition

The soft purring of Sarah’s cat sounds strangely melodic paired with the tick-tock of the glossy red clock on the wall. “You’ll get through it, not a bother to you” Sarah reassures me I’ll be just fine as I battle through my final year of college. “Don’t mind that cat,” she tells me, “she’s ancient.”

By Sian Abraham Long

The soft purring of Sarah’s cat sounds strangely melodic paired with the tick-tock of the glossy red clock on the wall. “You’ll get through it, not a bother to you,” says Sarah. She reassures me I’ll be “just fine” as I battle through my final year of college. “Don’t mind that cat,” she tells me, “she’s ancient”.

“Sometimes it’s a burning I can feel in my bones that can’t be soothed, but mostly it feels like a sharp pain or an ache, a constant cramp. There have been days I’ve felt totally hopeless, that nothing and nobody can help me and that I should accept I’ll be in pain forever,” Sarah says. She tells me this as she readjusts herself in her cosy armchair, all propped up with beautiful velvet pillows.

Sarah (27), who wishes to remain anonymous, is just one among hundreds of thousands of people living with the chronic pain disorder – fibromyalgia. Fibromyalgia made headlines in 2017 after the release of Lady Gaga’s documentary: Gaga: Five Foot Two, where the glamorous singer showed her journey with the illness. But the condition is far from glamorous.

What is fibromylgia?

Fibromyalgia is classed as a kind of arthritis but differs in that it is widespread pain felt all across the body. The word fibromyalgia derives from the Latin term for fibrous tissue (fibro) and the Greek terms for muscle (myo) and pain (algia).

“People living with fibromyalgia can experience physical and emotional challenges as a result of their condition,” says Brian Lynch, head of communications at Arthritis Ireland. “They may experience aching, stiffness and tiredness, which can change throughout the day and get worse with activity. It’s very common for people to experience poor quality sleep. Simple chores or activities may prove difficult to undertake because of muscular fatigue or lack of energy.”

Study and work with fibromyalgia

Sarah is a successful business graduate with a Masters in marketing under her belt. As a student myself, I wondered how her condition affected student life. Throwing her head back with an eye roll she says: “I found college very difficult, not because I didn’t enjoy it but because I felt lazy. I tried to concentrate in lectures but my fibro-fog would usually take over once it came to writing assignments or doing exams. It was always worse if I was going through a flare but even when I wasn’t, it made me feel like a failure because I could never recall instructions given to me. I thought I was stupid.

“Emotional distress, anxiety and depression are also common features of the condition. Fibro-fog is also experienced by many people, which is the term used to describe when someone has difficulty with concentration, memory deficits and confusion,” says Mr Lynch.

Fibromyalgia has been misunderstood and has been dismissed as something Sarah tells me is “all in your head”. This is as a result of the difficult diagnostic process and due to many people simply not knowing what it is.

“US research indicates that it is most prevalent among middle-aged women, perhaps accounting for three in four of those diagnosed,” says Mr Lynch. When Sarah was diagnosed at 19 she was unsure about what fibromyalgia meant and was offered little in the way of information and support.

She says: “Things are much better today…there’s more support and understanding now eight years on.”

Onwards and upwards

“Have you seen these yokes? They’re deadly,” Sarah calls from the kitchen. She hurries back in with a fresh cup of tea and a can opener. “It’s an automatic can opener, they’re cheap enough, you should definitely get one.” She’s right, I probably should.

At 24, I feel comforted by Sarah’s young age. When we picture arthritis or chronic pain, most of us will imagine an elderly woman with painful swollen fingers and a walking stick. But arthritis can happen at any age, even to young, mostly healthy people, like me.

A few months ago, a GP asked me to hold a weighing scales with two chunky books piled on top. “Now, how does that feel?” he asked. Confused I replied that it was heavy, definitely really heavy. The weight I was struggling to hold, the doctor said, was supposed to represent the extra weight I was carrying around with me. I should consider exercising more, he said. I was in and out of the office in less than ten minutes and the humiliation of that occurrence has taken me some time to get over.

Many tests and a new doctor later I was diagnosed with fibromyalgia. While at first this was confusing, shocking and upsetting to me, I have begun to come to terms with it. Realising fibromyalgia is not a life sentence has been a challenge but it is possible.

Finding a support system is just as important as finding a treatment plan.

“There’s lots of support available for people living with fibromyalgia. Arthritis Ireland runs a confidential helpline service that offers support and information to anyone living with the condition. People call for practical information, as well as emotional support. Equally, there’s online support available through Facebook groups and Arthritis Ireland’s growing peer-to-peer service,” says Brian Lynch.

In 2015, Emma and Audry set up Fibromyalgia Ireland, a support network for people living with the condition. “Most people are fed up going to their doctors, specialists, hospitals and not getting relief from medicines. Our answer is usually mindfulness, yoga, CBT (cognitive behavioural therapy), NLP (Neuro Linguistic Programming), light and sound therapy, which we offer, and being part of a support group. We find that being in a support group, like ours, is very beneficial to people as they can be fully open about how their fibro is affecting their lives . . . they’ll be fully supported and cared for,” Emma tells me.

Setting up the group has helped Emma in her own journey and has taught her a lot about the condition. “I was lonely, I felt isolated and misunderstood. I thought that if there was a group of people with the same illness who could discuss it, I wouldn’t feel as bad about it.

“This also helped me to learn more about it and be a better advocate and better support to other people,” Emma continues.

Eight years after her diagnosis, Sarah is managing her condition and living life to the fullest.

“I still have bad days, but now I know how to ask for help,” says Sarah. At 27, despite her condition, Sarah is a mother of one, a swimming fanatic, a marketing consultant and a fiancé.

Sarah checks the bus times for me as we finish up the interview. She tells me she knows the winter is harder for fibros and wouldn’t want me standing out there in the chilly wind. I head down the driveway and turn for a wave, “you’ll get through it,” she says again, “not a bother to you”.

Support is available from:

Arthritis Ireland

Helpline: 01 661 8188 and 1890 252846

Website: www.arthritisireland.ie

FibroIreland

Website: www.fibroireland.com

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