'I was diagnosed at the age of 33, lost my job, and my relationship ended' - Irish woman battling chronic pain
Fibromyalgia is poorly understood but those affected by this debilitating condition face a daily battle to live a normal life. Kathy Donaghy finds out how they cope
For years, Rachel Lynch battled a range of seemingly unrelated problems which bit by bit, destroyed her life. Plagued by constant pain and fatigue, by the time she reached her early thirties, her condition was deteriorating and her doctors were baffled. Unable to work, she lost her job, her fiancé and then her house.
Doctors finally diagnosed fibromyalgia, a poorly understood chronic condition which causes widespread musculoskeletal pain, often accompanied by sleep problems, memory loss and mood changes.
It's believed to affect thousands of Irish people, and it's been in the spotlight lately after the government's decision to clamp down on access to the pain relief patch Versatis, used by many patients to relieve suffering. But what is it like to live with this condition?
Now 45, Rachel is determined that others get a diagnosis quickly so they don't waste years of their life searching for answers. She believes that part of the reason it took so long for her to get diagnosed is that her symptoms were being treated individually, rather than being viewed as part of an overall condition.
Within a few months of her diagnosis at the age of 33, she lost her job. Her relationship also ended. "I had to give everything up and move back home with my parents and start from scratch. It was one of the most difficult periods of my life. I was relieved that at least I had a name for this but then I realised I didn't have a clue how to deal with it," she says.
"My 30s were a write-off. They were spent reading medical books and going to conventions. This illness is a bottomless pit in terms of money. I tried so many different things but nothing took the edge off the pain. My attitude at first was you get sick, you go to the doctor, you get medicine and you get better but I realised I was going to have to work my way out of this some other way," she says. What she describes as a "personalised medicine" plan paved the way to progress. Through her own painstaking research she found that nutrition, specific strengthening exercises, physiotherapy and having a good sleep routine were essential ingredients in her toolkit to feeling well.
"There were months when I just lay in bed. None of my medication was working. I met a physiotherapist who had been working in the US and she did a combination of physio and nutrition. Under her guidance I realised some of the food I was eating was affecting my pain and fatigue."
Rachel learned how to do a very specific form of tai chi called LungYing with kungfu.ie which helps improve movement and health in general and she began to work as an adult literacy tutor, gradually building up her hours. She also undertook a degree in Psychotherapy and did her thesis on the psychological impact of dealing with Social Welfare for Fibromyalgia patients. She now works in as a counsellor for patients living with chronic pain.
"Fibromyalgia could have been a full stop but instead it was a comma. I've retrained as a literacy tutor and help people share their stories. Out of something very dark and difficult came something positive.
"It was a long and difficult road but I am on the right track now. It is a life-long condition but I've learned how to manage it. There are some things that are out of my control like the weather which greatly affects my condition but I adjust my activities in the winter to accommodate this."
While the condition mainly affects women, men can have fibromyalgia too. Peter Boyd (34) who lives in Balbriggan in North Dublin says he's speaking out about his experience so that other young men will have someone to talk to if they are diagnosed with the condition.
It was around Christmas of 2010 at the age of 27, when he began to feel completely exhausted. His job as a barman kept him busy and he put his extreme tiredness down to burning the candle at both ends.
"I was a good barman. If you shouted ten drinks I'd get them up to you. It got to the point where I'd make mistakes. This wasn't normal for me. There was a lot of that kind of confusion and that really upset up. I know now the confusion is called 'fibro fog' but it used to really irritate me if people corrected me," he says.
He got a referral to see a rheumatologist who took his history and diagnosed fibromyalgia. "I'd never heard of it - I'd no idea what this meant. For the first five seconds I was massively relieved because there was a name for this. But then I realised this is life-long, it's not going away," says Peter.
He was also diagnosed with sleep apnoea, a sleep disorder in which breathing repeatedly stops and starts and he uses a Continuous Positive Airway Pressure (CPAP) machine to sleep at night.
As well as losing his job, his relationship with his girlfriend ended and he struggled psychologically to deal with his diagnoses. His confidence plummeted and he became anxious and depressed.
"I really struggled with depression. Every day was a battle to get up out of bed. I had always been confident. I got on with life and saw the good side of things. All I got for two years was bad news," he says.
With the support of his family Peter went for Cognitive Behavioural Therapy (CBT) and within a few months began to build up his confidence again. And while he is still dealing with fatigue and pain, by learning about fibromyalgia he has been able to manage his symptoms including incorporating exercise into his life.
"Everyone is impacted differently by this. Physically I'm about 60pc of where I was before. Mentally I'm miles ahead," he says.
In 2014 after what he describes as a couple of lost years, Peter went back to college to study digital media. He blogs about his experiences at fibrofella.wordpress.com and is working with FibroIreland to make sure more people know how this condition affects people.
According to consultant rheumatologist at Tallaght Hospital, Dr Ronan Mullan, there is no diagnostic test for Fibromyalgia and as a result patients may have been sent to various medical specialists looking for answers.
He says educating the patient about the condition and helping them to manage their expectations is very important.
"With fibromyalgia there's usually no single treatment or pill that's going to cure them and that more usually a multi-modal approach including medication, physical therapies, self-help directed interventions and occasionally psychological supports are required," says Dr Mullan.
He says symptoms like joint pain and fatigue can be made worse by sleep disruption and this can lead to a drop in mood. For this reason Dr Mullan says he recommends a co-ordinated, holistic approach to treatment including occupational therapy, physiotherapy, cognitive behavioural therapy (CBT) and medication as well as lifestyle changes.
In term of medication, Dr Mullan says some drugs used to treat depression have been shown to be benefit fibromyalgia patients.
"While the links between chronic pain and emotional disturbance are not fully understood, previous research has shown an overlap in the brain pathways which control psychological pain as well as physical pain.
"This is why, for certain patients, dealing with emotional stressors in their lives can also lead to relief of physical, as well as psychological pain," he says.
"As well as medical intervention, the patient must look at their own life is see if there are other factors in their lives that are causing them stress and removing those things to take the pressure off.
"We recommend things like yoga and mindfulness that have been shown to have positive benefits for both the mind and the physical body," says Dr Mullan.
• To mark international Fibromyalgia Awareness Day, on May 12 Fibro Ireland and Arthritis Ireland are hosting a Fibromyalgia health and wellbeing summit. See arthritisireland.ie and fibroireland.com for more information.
What is fibromyalgia and how is it diagnosed?
* When pop singer Lady Gaga cancelled her European tour last year and made a documentary about living with the complex condition, it was the first time many people had ever the word fibromyalgia. Hard to pronounce, it's also hard to diagnose, treat and live with.
* Ignorance around the condition also exacerbates the pain and hurt people living with the condition feel.
In the past, many patients were often labelled as "neurotic" because of their unexplained symptoms. According to FibroIreland - the advocacy and support organisation for people with the condition - up until recently doctors believed it was entirely psychological in basis.
* Fibromyalgia is defined by widespread chronic pain, as well as a broad spectrum of related symptoms including fatigue, cognitive dysfunction, and reduced physical function.
Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. It tends to be seen predominantly in women, but can occur in men, and in all age groups. Its main symptoms include headaches, muscle pain and stiffness, sensitivity to cold, immune dysfunction, fatigue, bladder issues, poor sleep and restless legs.
* Because the symptoms of pain are in the musculoskeletal area, rheumatologists are usually the specialists who make the diagnosis in the first place.
* Diagnosis is made by exclusion - you exclude all other rheumatology conditions - before arriving at the diagnosis of fibromyalgia. A large part of the diagnosis is talking to the patient and asking them questions about their symptoms. While there are a lot of different causes of joint pain, things like rheumatoid arthritis must be ruled out first.
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