Fibromyalgia is Declared as a New Long Term Disability

Fibromyalgia is to be recognised by health professionals in Northern Ireland as a long-term condition.

People who suffer from it complain of aches all over the body, as well as profound fatigue.

Other symptoms include headaches, sleep deprivation and difficulty concentrating.

Despite the severity of symptoms, people living with the condition in NI have said their voices have gone unheard and their symptoms ignored.

Chronic aches

After being inundated with complaints, the Patient and Client Council in Northern Ireland three years ago pressed the case for fibromyalgia to be recognised as a long-term condition.

Having interviewed sufferers and lobbied politicians and health professionals, dedicated services are to be established across the health trusts.

Martina Marks, who lives in County Down, said it was a relief to be taken seriously.

“I have lived with the pain since 1997. At times it can be chronic, with aches in my muscles and joints,” she said.

“Often the pain is unbearable and then you have to contend with a sleep disorder, headaches and just not being able to deal with everyday life.”

‘All about pain’

Fibromyalgia has baffled health experts for decades. It does not show up on blood tests or scans and is often difficult to diagnose.

Kevin Davies, a professor of medicine at the University of Sussex and an expert in fibromyalgia, said: “People who present with problems will go for scans and blood tests, but nothing shows up as it is all about pain.

“But that doesn’t mean there isn’t a problem – it’s just the doctor can’t make a diagnosis of which he feels secure about.”

It is thought about one million people are living with the condition across the UK.

Fibromyalgia is recognised as a condition by NHS Choices in England and Scotland, meaning treatments should be available to patients.

However, in practice the availability of services is patchy as not all health trusts have the resources to target the condition specifically.

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While there is no specific figure for Northern Ireland, it is thought around one in 25 may be coping with symptoms – a majority of them undiagnosed.

Louise Skelly, director of operations at the Patient and Client Council, said: “What we are surprised about is how many patients have come forward, wanting to share their stories.

“They felt very isolated and very alone and what we also discovered is that the clinicians also have found this a difficult area to work in so they have welcomed the sharing of knowledge and information.”

Concerns taken seriously

Its recognition as a condition will raise awareness of it among the public, but also among health professionals.

Once diagnosed, patients will receive a “pathway” that will outline what services are available including medication or advice around exercise and alternative therapies.

According to patients, the biggest breakthrough is having their concerns taken seriously.

Martina Marks was not diagnosed for 10 years.

“It was a very long journey. I hadn’t heard of it and neither had my GP,” she said.

“It was important that I got a diagnosis, because I’d been going through different treatments, seeing different doctors and nothing was giving me relief.

“Some of them don’t understand the illness and I think we need an awareness campaign for the medical profession to understand the variety of symptoms with fibromyalgia and the severity of it.”

While there is no cure for the condition, there is evidence that lifestyle changes including relaxation, heat, exercise and diet can make a difference.

Severe cases will be treated with medication.


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17 thoughts on “Fibromyalgia is Declared as a New Long Term Disability”

  1. Cherry alston

    Thank god this is been made to be heard. I was diagnosed around 12 months ago after suffering excruciating back pain, burning up, feeling dizzy at times, and it’s like having bouts of bad flu on very bad days, and doing any over excersion, within a few hours it’s like , and feels as though you have run a marathon 😩🙁

  2. Elena Sifuentes

    They need to recognize it in The USA as well, my judge saw me walk in took a look at me and said no. It’s an invisible disease mine turned into Lupus and Osteothritis and every disease known to man. Some studies think it will lead to MS as well, like its a steadily progressive disease.

  3. Its not understod in wrexham wales and the people at pip think your making things up ben trying 2016 and still they say i need no help lol iv got a disability that can not be seen so im a lier 😂

    1. I totally agree with you ,
      I find days so hard to make a cup of tea
      And cleaning after toilet
      How much more disabled does one need
      I need pip for using for my illness for paying yoga , and other things to make me a bit less reliant on my husband and children who have their own responsibilities

  4. Shelley Dryden

    About time too. Should be recognised world wide. If it’s diagnosed then it should be recognised. Just another discrimination.

  5. I’ve had fibromyalgia for 18 years, along with Ankolysing spondylitis, osteotomy arthritis. It’s difficult for the outside world to see this invisible illness but believe me you wouldn’t want to be in my body. Excruciating pain everywhere, insomnia due to pain, depression, foggy brain so can’t concentrate, very forgetful, IBS, pain ranging from sharp searing pain likened to hot poker being twisted, to a dull aching. Plus other symptoms, but that’s enough to be going along with. It about time Go and specialists were more informed. It’s not all in our head, it’s real. No one would want to live 24/7 like this.

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