Life changes dramatically when you are struck down with a chronic illness, says Marie Macken. This is her story as told to FIONA TYRRELL
I SUFFER from fibromyalgia. It is a chronic pain disorder of the central nervous system, causing pain all over the body. No two people with fibromyalgia have the same pain, which makes it very difficult to diagnose.
Sufferers often experience sleepless nights leading to chronic fatigue. Even with pain tablets and sleeping medication, sometimes I get only two or three hours’ sleep at night. Sometimes I don’t sleep at all.
Other conditions associated with the disorder include bowel and bladder disorders, restless legs and depression. In my case I have suffered from sinusitis for years. Since I have been treated for fibromyalgia, this has improved.
Doctors are unsure of the cause of fibromyalgia, but they think it might be related to trauma to the body of some description. Some of the reasons why people might suffer from the disorder include whiplash or viral disorders. We suffer pain because our pain sensor transmitters are not working properly.
More than 80 per cent of fibromyalgia sufferers are women, mainly between the ages of 20 and 50 but it can affect anyone of any age.
A big challenge for fibromyalgia sufferers is getting diagnosed. I developed fibromyalgia at the start of 2006, but I wasn’t diagnosed until 18 months ago.
I used to work in Alsaa, the Aer Lingus sports centre, where I was secretary to the chief executive. It was a very busy job that I thoroughly enjoyed.
I had a very understanding boss, who kept my job for me but after seven months I knew that there was no way that I could return to work.
At that time I was living in severe pain, unable to even walk down the stairs, and still no diagnosis. I have not worked since.
In my bid to get a diagnosis I have been to nine doctors. Eventually a rheumatologist in Cork, Dr Sinead Harney, diagnosed me. I now see five doctors on a regular basis.
Diagnosis of the disorder is only by a process of elimination. Doctors have to first rule out other chronic pain conditions such as rheumatoid arthritis and osteoarthritis.
Then there is a pressure point test. If you experience positive pain in 11 of 18 different points on the body then a diagnosis can be made.
Initially I was elated. Finally I had a name to put on what I was suffering. It is very frightening to be in pain and suffer chronic tiredness and not know what is wrong. It is a very scary place. With diagnosis, the long road of learning how to cope and manage begins.
There is no cure for fibromyalgia so successful treatment requires a multidisciplinary approach to address the wide-ranging effects the illness has on an individual’s life.
One of the most important factors in successfully managing the condition is recognising the need for lifestyle adaptation. Everything needs to be addressed including medication, sleep, diet, nutrition, exercise, relaxation and stress.
Therapies that can help fibromyalgia sufferers include muscle therapy, acupuncture, dry needling, massage, chiropractic manipulation and osteopathic treatment. Relaxation and breathing techniques can help decrease pain and anxiety.
I need to keep my muscles moving to keep the pain at bay. So I get my muscles rubbed out about once a week. Otherwise they would go into hard lumps.
I have also just started a new therapy called frequency specific microcurrent with a neuromuscular therapist. I only started it very recently, so it is too early to tell. But I have had some full nights’ sleep since I started it. I am over the moon.
Life changes dramatically when you are struck down with a chronic illness. Being out of work and not earning a salary can be a big challenge to your self-esteem.
Despite the fact that the condition is recognised by the World Health Organisation, some doctors don’t believe that fibromyalgia is an illness. They think it is all in our heads. At the end of last year MEPs had a declaration recognising fibromyalgia as a condition adopted in the EU parliament. This was a great step forward and will ensure more awareness of the disorder in Europe.
There a lot of people out there being prescribed painkillers and sleeping tablets without a diagnosis. Unless they go see a rheumatologist they will not get diagnosed. It is believed that there is anywhere between 2 and 7 per cent of the population affected by the disorder.
Three drugs are available for the management of fibromyalgia in the US, but these have not yet been approved in the EU.
Last August I got a scholarship to travel to Washington to attend a seminar given by the National Fibromyalgia Association of the US. It was an amazing experience for me. I had never met anyone with fibromyalgia before.
Inspired by the seminar I set up a support group in Drogheda. I put an advert in the local paper and expected to hear from a handful of people, but I was totally taken by surprise by the number of people interested in joining.
We now have 50 members, some of whom travel from Dublin to attend our meetings. Everyone in the group is so delighted to be able to connect with others suffering in chronic pain.
I am presently starting up an Irish fibromyalgia association which will then be able to link in with the European Network of Fibromyalgia Associations.
Anyone wishing to join the new Irish Fibromyalgia Association can contact Marie Macken at fibromyalgiaireland@gmail.com or by post at Unit 12F, Duleek Business Park, Duleek, Co Meath.
** You can also contact Sally Edwards, Dublin Fibromyalgia Support Group fibroireland.com
** If you have had a health experience – good or bad – you would like to talk about, please contact: healthsupplement@irishtimes.com