Fibromyalgia: learning about my illness known as the F-word

One of the ironies about fibromyalgia, which isn't the easiest word to get your mouth around, is that its symptoms include difficulty with speech. Fi-bro-my-al-g-ia: try putting that into Google when you've got "brain-fog".

Speech difficulty and brain-fog are just two of the symptoms; there are many more, but none of them are dramatic – on their own.

So, what is fibromyalgia? Its medical description is a “neurological hypersensitivity syndrome resulting in over-activity of the sensory and autonomic nervous pathways”.

You’re probably experiencing brain-fog yourself after reading that, and I’ll get to all that medical jargon later but, put more simply, fibromyalgia is a change in the way the brain and spinal cord “listen” to the body.

Which is nice to know, after 22 years. Because that’s how long it took to get diagnosed: 22 years.

The problem was that none of my symptoms, taken in isolation, were all that unusual or “serious”. As a child I had dozens of throat infections and an overactive bladder. I was always in trouble in school for using the toilet too much.

As a teenager I developed migraines, and got severe cramping and nausea with my periods, so much so that I missed a Leaving Cert exam. In my 20s I started getting bladder infections and developed chronic back pain.

Even so, life ticked along – I had a good career as a graphic designer, was engaged to be married and had a house. But it went off the rails in my early 30s after a serious knee injury which was followed by a prolonged bout of pneumonia. First went the job. Then the fiancée. Then the house.

Lung infections

Three years of continual lung infections led me to the office of a respiratory specialist in Beaumont, who was the first doctor to say: “I think you may have something called fibromyalgia.”

Progress, right? Almost. Turns out I’m lucky enough to have two other conditions – Hypermobility Syndrome and Scheuermann’s Disease. The first of these makes me extremely sensitive to any medication, so it took another seven years to get a treatment plan that worked.

This might all seem like a horrendous ordeal but, like I say, life ticks along, and the secret is that it’s the little things that stick with you.

Like the time in a supermarket queue with my mother and I heard another woman say: ‘You’d think that young one would carry those messages for her mother. Young people today are so selfish.”

Or the time a former boss asked me if I was trying to break his toilet. Or the time I cried in front of a social worker after being refused a medical card for the fourth time. Or the time I was berated for not dancing at a wedding, and was yanked towards the floor. My arm hurt for months.

Or the many, many times I pretended to be the designated driver, because alcohol brings on a migraine. Or the time a driving instructor lost her temper because I mixed up left and right. It took me 10 years to build the courage to go for another lesson.

Twenty-two years, 10 years, seven years. These days I’m glad to report that getting a diagnosis for fibromyalgia takes two to five years, but that’s still two to five years too long. I believe the way to solve this is through “personalised medicine” (I know, more jargonbut once you start taking a serious interest in your own health you run up against a brick wall of jargon and concepts you’d need a college degree to understand).

‘Personalised medicine’

So: “personalised medicine” recognises the ways in which your disease risks are different from everyone else’s. This has the advantage of tailoring a treatment that will work better for you than it would for someone else. I take a size four shoe. I am not going to get very far, clippity-clopping through life in a size six shoe, which is the national average. Life isn’t a one-size fits all, why should medicine be?

So in my quest to learn more about my own condition I came across an organisation called IPPOSI (Irish Platform for Patient Organisations, Science and Industry), which focuses on issues that all patients and patient organisations face such as understanding how the Government pays for drugs and how to access those drugs.

IPPOSI also provides training about research and development and clinical trials, and it was through IPPOSI that I was lucky enough to get a place on training with the European Patients Academy on Therapeutic Innovation (Eupati) –and this really is like a university course.

For the past year I have gone through a heavy mixture of e-learning and face-to-face sessions with four other Irish people and 40-odd Europeans and we have learned about every single aspect of developing new medicines. And that's a lot of jargon. But that's no problem now, because I understand it. It's dense stuff, but this is the language you need to know if you want to seriously engage with any healthcare system effectively. That is why Eupati – which is a partnership of NGOs, universities and scientists, pharma companies, and the European Commission – came together to fund the project and make it happen.

I used to sit there in the doctor’s office and ask, “Why can’t they just make a drug for that?” Now I know why.

But I also know that you can’t sit around waiting for something to happen. You have to make it happen. Particularly when you have an illness that is known as the “F-word” in medical circles. But if you want change for the better, you have to get out of your comfort zone . . . and that’s not just for me the patient, that’s for you the academic, the researcher, the doctor.

So today I am going to Dublin Castle to address a room full of scientists, doctors, patients, people from industry, and from the Department of Health, and I'm going to talk to them. As an equal.

Remember: professionals built the Titanic and volunteers built the Ark. Educated patients working with experts leads to a better journey for everyone.

IPPOSI is hosting a conference in Dublin today called ‘Patients Driving Health Innovation’.