Submission for the Joint Oireachtas Health Committee
December 6th, 2012
Leinster House
Topic
FIBROMYALGIA SUFFERERS IN IRELAND
DEFINITION
The term Fibromyalgia describes a syndrome with widespread and often disabling muscular
pain and areas of tenderness. It is a central nervous system disorder where the nervous
system is ‘over-sensitised’. The word syndrome is used to highlight the fact that the
condition involves more than just pain with chronic fatigue, cognitive impairments, a
heightened and painful response to pressure, sleep disturbance, joint stiffness, bowel and
bladder abnormalities, urogenital disorders, anxiety, numbness and tingling prevalent in
sufferers.
The cognitive dysfunction, known as ‘fibro-fog’, is characterised by an impaired ability to
concentrate, word-finding difficulty, problems with short and long-term memory, difficulty
following simple oral or written instructions, impaired speed of performance, poor
judgement, feeling disorientated, difficulty understanding what you read and diminished
attention span.
Other symptoms include nerve pain, muscle spasms, skin disorders, myofascial pain,
headaches, vertigo, intolerance to light and noise, feeling off-balance, staggering walk,
depressed mood and unpredictable mood swings. All symptoms are worsened by
temperature changes, air travel and stress.
14 million persons in the EU and 1-3% of the general population worldwide suffer from
Fibromyalgia. It was recognised as a disease by the World Health Organisation in 1992 and
by the EU in 2008. It affects all ages and all ethnic groups and is more prevalent in women
with a ratio of 87% women to 13% men.
CAUSES
The cause of Fibromyalgia is currently unknown. The current thinking is that FMS
(Fibromyalgia Syndrome) arises in individuals with a number of nerve transmitting chemical
and sensory disturbances. These changes are only present in genetically-predisposed
individuals, making FMS a condition which can be seen in several family members.
The autonomic nervous system (that part of the nervous system which acts as a control
system for the body) is overactive in FMS. There is an imbalance in the levels of a number of
hormones and chemicals in the fluid around the brain and spinal cord leading to problems
with pain perception, natural analgesia, sleep pattern, mood and concentration.
FMS sufferers have lower blood cortisol levels than non-sufferers. Cortisol is important in
helping to deal with stress.
High resonance brain-imaging studies have reported decreased blood flow within parts of
the brain. Also, an acceleration of normal age-related brain atrophy (shrinkage) has been
demonstrated. Grey matter loss in parts of the brain appears to increase 9.5 times the
normal rate with each year.
DIAGNOSIS
Many, many years pass for a Fibromyalgia sufferer before a diagnosis is made and a lack of
knowledge and understanding of the disease by healthcare professionals (in particular GP’s
and physiotherapists) means that Fibromyalgia sufferers make numerous GP visits, have
more specialist referrals, are issued more sick notes and receive more in-patient services
before a diagnosis is made.
There is no single test that can fully diagnose Fibromyalgia. As the term Fibromyalgia means
‘pain of the muscle and connective tissue’, patients continue to attend rheumatologists
even though Fibromyalgia is now defined as a neurological disorder. The American College
of Rheumatology define Fibromyalgia according to the presence of the following criteria:-A history of widespread pain lasting more than 3 months affecting all four quadrants of the
body.
-There are 18 designated possible tender points on the body. The patient must feel pain at
11 or more of these points.
The consultant also considers the patients’ symptoms.
Despite this, many General Practitioners still believe it is psychogenic in origin and are very
dismissive of us as there is a lack of abnormalities on blood tests and MRI’s. Once diagnosis
is made, there are no supports available to sufferers and Healthcare Professionals lack
confidence in diagnosing and managing Fibromyalgia.
Treatment
Fibromyalgia Syndrome is not life-threatening but it can cause significant disability.
Guidelines for management were issued by EULAR (European League Against Rheumatism)
in 2007.
The guidelines stress the need for:



Comprehensive pain evaluation
Functional assessment
A review of the psychosocial situation of the patient
Drug management of symptoms
There is no cure for Fibromyalgia however, there are a number of treatments that help ease
the symptoms.
1.
2.
3.
4.
5.
6.
Medicines such as analgesics, antiepileptic drugs and anti-depressants.
Psychological support (cognitive behavioural therapy)
Hydrotherapy
Moderate exercise
Relaxation and stress management
Alternative therapies such as herbal medicines, acupuncture, fascia release, amatsu
etc.
Psychological Impact
The impact of a diagnosis of Fibromyalgia is colossal. The following is a summary of the
main concerns shared by Fibromyalgia sufferers around the country:1. Coming to terms with the diagnosis and the implications of it on one’s future life.
2. Being ‘believed’ as we look well to others.
3. Difficulties in finding understanding healthcare professionals and finding effective
treatment options.
4. Having to give up employment and the enormous impact this has on an individual’s
morale and financial status and family. This is felt particularly acutely by male
sufferers as they struggle to cope with the inability to work, earn a living and support
their families.
5. The effect the illness has on relationships can be devastating, especially within one’s
own family. Husbands, wives, partners and children all suffer the consequences of
this destructive illness leading to many cases of separation and divorce in families.
6. Loss of independence both financially and physically can be demoralising.
Depression is suffered by many of those with Fibromyalgia; most tragically, sufferers
have committed suicide as there was no coping mechanism available to them (there
have been two suicides to Fibromyalgia in Ireland over the last two years)
7. Treatment options that ease the symptoms are costly and prohibitive to many
sufferers.
8. Feeling a burden on both family and society, feeling that one is no longer a
functioning and productive member of society is a hard pill to swallow.
9. Social isolation is prevalent as it is extremely difficult to take part in social activities
and friendships fall by the wayside cementing the feeling of loneliness.
10. Fear for the future as one lives with the uncertainty of how the illness will progress
in the future.
Department of Social Protection and Medical Assessors
Due to the nature of Fibromyalgia, we are forced to give up work and will never return to
the workplace. When dealing with the Department of Social and Family Affairs, we
encounter huge difficulties. Two financial supports are available to us, the Disability
Allowance and the Invalidity Pension. The difficulties faced in accessing these payments are
immense. When we apply, we are denied. We then seek a review and are denied and then
we apply to the Appeals Office. Once we are seen by an Appeals Officer for an independent
assessment, we are generally awarded the payment. This process generally takes between
12 and 18 months and is an enormous challenge for us as Fibromyalgia is a neurological
disorder aggravated by stress and we do not have the wherewithal mentally or physically to
deal with the challenges encountered in the Department of Social and Family Affairs.
In addition to this, whilst we are on Illness Benefit awaiting a decision, we are reviewed by
the Departments’ Medical Assessors. New protocols were to be put in place by July 2010 for
dealing with Fibromyalgia sufferers. Sufferers have experienced that there is an unclear
understanding of Fibromyalgia by the Assessors and they do not allocate more than 5
minutes to a review displaying a thorough lack of knowledge and empathy with the disease.
Summary
Fibromyalgia affects all aspects of a sufferer’s life as well as the lives of their families. It
restricts social activities and limits the patient’s ability to work. The lack of specific blood
tests and other diagnostic tests causes disbelief among some healthcare professionals. Trial
and error dosages of drugs used to treat other disorders are part of the treatment
programme together with alternative therapies. The psychological impact of the disease is
immense with feelings of hopelessness, loneliness and loss common among sufferers of this
debilitating condition. The challenges and obstacles faced in dealing with the Department of
Social and Family Affairs are huge with many finding it impossible to continue to fight for
their entitlements due to the stress and being worn down by the process.
Conclusion
It was only in February of this year that the HSE placed details of Fibromyalgia on their
website. It was updated in August to read ‘Fibromyalgia, also called Fibromyalgia Syndrome
is a long-term condition that causes pain all over the body. There is currently no cure for
Fibromyalgia.’
Recommendations
1. As a group, we would like to have Fibromyalgia recognised as the long-term illness it
is. Being part of the long term illness scheme would greatly reduce the stress of
worrying about the current and future costs of our condition.
2. Implementation of the guidelines issued by EULAR in 2007 so that together with
drug management of symptoms, there would be comprehensive pain evaluation, a
functional assessment and a review of the psychosocial situation of the patient at
the diagnosis stage. (Refer to Jim Higgins MEP on this point as he is president of
EULAR)
3. Implementation of the Declaration of the European Parliament of Fibromyalgia
69/2008. The declaration is to help raise awareness of Fibromyalgia and facilitate
4.
5.
6.
7.
access to information for health professionals and patients, by supporting national
awareness campaigns, to encourage member states to improve access to diagnosis
and treatment, to facilitate research on Fibromyalgia through the work programmes
of the EU 7th Framework Programme for Research and future research programmes;
and finally to facilitate the development of programmes for collecting data on
Fibromyalgia. According to a response by Minister Reilly on 17th July 2012, ‘Ireland’s
recognition of Fibromyalgia as a distinct condition is in compliance with the
European Declaration 69/2008 on Fibromyalgia’. If this is the case, why is it still so
difficult to get a diagnosis, why are there no statistics available on the prevalence of
Fibromyalgia in Ireland and why has Ireland never had a National Awareness
Campaign?
Entitlements to disability payments should be made available on an easier and
swifter basis.
Provision of support for those diagnosed with Fibromyalgia with a Medical Card or
GP Visit Card.
Establish a Fibromyalgia Unit within the major hospitals so that sufferers have a
dedicated unit to which they could be referred by their healthcare professional.
Set up a national help line for sufferers of Fibromyalgia