Fibromyalgia. What is Fibromyalgia ?
Fibromyalgia is a central nervous system disorder, and can be described as a central sensitization syndrome, caused by neurobiological abnormalities. This acts to produce physiological pain and cognitive impairments, as well as neuropsychological symptomatology.
In simpler definition:
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, nerves, ligaments and tendons, multiple tender points - places on your body where slight pressure causes pain, as well as very debilitating chronic fatigue and problems with mental processes, such as thinking and learning ( which is also called by nickname “Fibro fog”)
Myofascial pain syndrome is a chronic form of muscle pain. The pain of Myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.
You may be asking,” Why did I start the Petition?” Well….
While Fibromyalgia is not rare diseases by the numbers, even though it is in the World Health Organisation listed as a neurological disease, we can feel it, by the rarity of research, understanding & treatment towards the chronically ill community.
This is a life-changing and debilitating condition and we are often outcasted sufferer's of stigmatisation & marginalisation. This is classified as an "impairment" or a"long-term illness" rather than a disability. With these factors comes with sufferer's struggling with their mental health due to these impacts.
It is estimated that 90,000 to 180,000 are affected by Fibromyalgia in Ireland. This illness, can have quite an insidious onset, that it just doesn’t start just suddenly, it starts as local pain, in one area of the body, then builds up gradually, with conditions unlikely to be resolved.
We have been trying to highlight how this pain affects all areas of in the lives of sufferers'. An example would be the serious gaps in treatment care, from a social welfare and healthcare point of view, our occupations, school/college and etc.Fibro Ireland and Chronic Pain Ireland have been in contact with social welfare several times and no answer has been given.
HSE told them that they would update the Fibromyalgia section on their page…but 7 years later, this still hasn’t happened. Protocol 6 is no longer available on the social welfare site.
And so I want to stand/sit/lie in solidarity with my fellow Spoonies by starting this petition (on the 2nd March 2019), to help raise awareness of our reality & injustice on our invisible daily battles.
(The spoon theory is a disability metaphor and neologism, used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness.)
We want better communication & updated understanding from the healthcare system. We deserve increased biomedical research funding, removal of ineffective treatments & instead care provided by medical professionals who are trained in the accurate diagnosis & appropriate treatment.
Do not just leave it up to these Charity sectors, such as FibroIreland and Chronic Pain Ireland and their support groups ( who have been beyond amazing in supporting and raising awareness on the sufferers' behalf).
On 24 January 2007, the World Health Organisation definitively classified Fibromyalgia with the code M-79.7 in the International Classification of Diseases (Chapter XIII ‘Diseases of the musculoskeletal system and connective tissue’).
In the United States, fibromyalgia is recognised as a disease which causes disability, and the Food and Drug Administration (FDA) has approved drugs to treat the disease.
And after a historic debate in the UK, Westminster Hall, on Tuesday 15th January, MPs of all parties contributed to a debate on fibromyalgia, helping to raise awareness of the condition. They shared stories from their own lives, and those of their constituents, about its impact.
The debate focussed on the impacts of fibromyalgia, the support available and how the healthcare and benefits systems could be improved for people living with condition. It followed a petition started by a person with the condition, Adrienne Lakin, that attracted over 115,000 signatures and called for fibromyalgia to be recognised as a disability under the Equalities Act 2010.
Over 20 MPs turned up to speak in the debate. It was led by the Labour MP for Chesterfield, and in Westminster, Toby Perkins.
We want the same in for the people of Ireland and not to be left behind!
Even the European Parliament has signed a declaration, calling for the recognition of Fibromyalgia as a disease which causes disability with a right to claim exemption. But to date, nothing has been done, as regards to implementing the declaration here in the Republic of Ireland. Why?
Fibromyalgia is still somewhat of a black box to the Irish medical community. It is a diagnosis of exclusion; in order to get the label, you must have pain in all four quadrants of the body for more than the recommended three months (most times this is not often the case though) Often, you have at least some of the 18 fibro “tender spots” on your body—on your legs, on your shoulders, on the back of your head—that trigger pain when pressed.
So what are you waiting for? We want this to be respectfully recognised as a disability, according to the Disability Act 2005.
Please listen to us and believe in us...by signing and sharing this :)
Motto? Don't judge a disability by its visibility :) x
