Mr. John Maher:

I thank the Chairman and the members for giving us the opportunity to speak with them about our lifelong crippling condition. I have come here today to speak on behalf of everyone in Ireland suffering from fibromyalgia about the challenges we face on a daily basis. As members will see from our submission which was sent to the committee, fibromyalgia does not consist only of chronic pain, chronic fatigue and memory loss; it is composed of many other symptoms.

The number of support groups in Ireland is on the increase to cater for those who have nowhere to turn. With these support groups comes a place of understanding where everyone knows exactly how the other is feeling. No one stands apart. Members may check our website, , which will give a list of support groups in Ireland.

There are no demographic data on the disease in Ireland as diagnosis takes a very long time. Sufferers are usually told, after a host of tests, that they are suffering from depression. This is not the case with fibromyalgia. We may have a very low mood but this is due to the constant battle to have our voices heard and the battle with the medical system, which does not understand what fibromyalgia is or how to diagnose it.

Unfortunately, most drugs do nothing to alleviate the pain, but the side effects are very alarming. There are three main drugs used for fibromyalgia in Ireland: Lyrica, Cymbalta and amitriptyline. Lyrica is used in the treatment of epilepsy and the other two are anti-depressants. Weight gain follows the taking of the drugs, as does desperation. The drugs leave the patient feeling drugged and listless, thereby leading to a lack of movement. The sufferer, at that point, stays in bed and hope fades.
It is essential to do moderate exercise, but nothing too strenuous, when one has fibromyalgia. The overuse of muscles can lead to a lot of pain. Constant fatigue is just like a switch that has been unplugged, and rest is the only answer. The majority of sufferers cannot hold down a job. A week in the life of a sufferer can involve pain that can be severe to moderate, but chronic fatigue is unrelenting.
I worked as a barman for 35 years. I had to give up work two years ago and had no choice. I could not understand what was wrong with me, I was so tired. I was very worried as tests were not giving me answers. When I did receive my diagnosis, I still found I was misunderstood both by the medical profession and my family. Friends looked at me implying I was lazy and that the condition was all in my head. This is the usual reaction to fibromyalgia. Sufferers may look well but we are dying inside. My story echoes time and again among sufferers. Our dignity has been taken, as has our sense of being useful. Inevitably, we try to retreat from the world.
I sought a support group and joined. It was a new beginning as I received understanding and some tips on how to live from day to day. All fibromyalgia sufferers' groups are self-funded and there is no Government backing. At the groups, people help one another and speak openly about their condition without misunderstanding.
I turned to the Department of Social Protection for assistance. For the first two years, I received illness benefits and was then told they would finish in July 2012. I applied for invalidity benefit and was told I was not entitled to it. The decisions have been made solely on the basis of paperwork. No one from the Department of Social Protection examined me and my letters from doctors and rheumatologists were ignored. I asked that my case be reviewed and was told I would have to supply more supporting medical evidence, which I duly did. To date, nobody has contacted me and I am still awaiting an answer. This is the case for most people suffering from fibromyalgia. Our doctors or rheumatologists almost dismiss us and in many cases have no idea how to treat us.
While this matter may not be directly associated with the work of the committee, members should note the impact on health is very damaging. The stress of having no money, not getting answers and having to go to one's local community officer to beg for money leads to more stress and nerves. If fibromyalgia were listed as a long-term illness, surely the process would be made so much easier for us.
There are various ways in which one can manage fibromyalgia to make life tolerable. These include relaxation, yoga and collective behaviour therapy, but these cost huge sums. Therefore, none of these can be availed of. The stress of being pushed from hospital to hospital and of being prescribed endless drugs as opposed to early diagnosis and the use of relaxation technology and self-management must be borne in mind. With the latter approach, there would be a significantly reduced cost to the State owing to lower costs related to doctors, consultants and drugs.
We are no different from anybody else with a disability except that we look well. We are totally misunderstood and there is no continuity in the medical profession regarding the treatment or understanding of fibromyalgia. We are not born with the disease, unlike some others, who know no other way of life. The diagnosis can come at any age. One's life must be readjusted and it is very difficult to keep going.
Let me draw members' attention to the entry on the HSE's website. It appeared only in February 2012 and was updated in August. It states:

Fibromyalgia, also called fibromyalgia syndrome, is a long-term condition that causes pain all over the body. ... There is currently no cure for fibromyalgia, because the cause is unknown.

If this is on the HSE's website, why is fibromyalgia not listed as a long-term illness? Before putting this on the website, why was no research done on the number of support groups in the country and what each group can do by way of offering help? The website gives links to information on depression, headaches, irritable bowel syndrome, painful periods and Fibromyalgia Support, Northern Ireland. I ask why painful periods are deemed to have anything to do with fibromyalgia. The reference to a support group is to a support group in Northern Ireland although there are several such groups in the South.

If the Minister for Health took the time to meet us to hear our stories and added fibromyalgia to the list of long-term illnesses, we could strike a balance whereby money could be saved and life could be made easier for us. Two young women took their lives recently because of this; this must not be allowed to happen again.