My endless pain: living with fibromyalgia

Kirsty Young, host of Desert Island Discs, has helped raise awareness about the painful and debilitating condition, but remains little known

I live with a poorly understood medical condition, often invisible, which means that my life is a bit Russian. I never know from one week to another, or even from one day to the next, how I will be.

Take the last month. I’ve had a couple of pretty good weeks, where I’ve been able to go out and do some extra things, like meeting friends. However, this also has its reward and for a few days I have stayed in bed without being able to leave the house.

This yo-yoing of the symptoms is typical of the experience of a patient with fibromyalgia. It is one of the most common chronic pain conditions in the world, has an estimated one million victims in the United Kingdom, and yet is shrouded in mystery. Last week, she came into public consciousness when  Desert Island record artist Kirsty Young said she would take some time off because she has the condition. Last year, Lady Gaga revealed that she was a victim.

My fibromyalgia began when I was 24 years old, shortly after the birth of my daughter in November 1993. It happened until May 2005 to obtain a diagnosis. In those 12 years, I was told that my symptoms were due to various types of arthritis, depression and, more than once, that they were all in my head. It was a very frustrating moment, especially when all the tests and X-rays were still clear.

When I finally got my diagnosis, it was a great relief to have a name for what I was experiencing. However, that relief lessened when I soon realized that many people do not consider fibromyalgia as a real disease. If a condition does not have a medical test to confirm it, then that condition does not exist, they believe.

My main symptoms are severe and generalized pain, chronic fatigue, cognitive dysfunction and memory problems (we call it “fibro fog”), sleep problems and irritable bowel syndrome, but there are many more that affect me to varying degrees. Like many people with fibromyalgia, I can see much better than I do, and the condition is often described as an invisible disease for this reason. Because you do not look sick, or there is no obvious cause for symptoms, people may not believe that you are as sick as you say you are, and this disbelief may come from medical professionals, family and friends, as well as from people strangers

Most times I use crutches for walking or my mobility scooter for longer distances. My balance and my spatial awareness are very poor, so I could wobble, stumble and fall if I do not use them. People tend to think that you either need to use a walking aid or not. But with fibromyalgia you may need it one day, then not the next.

Fortunately, my symptoms are at a manageable level, thanks to a combination of medications, supplements, complementary therapies and self-control techniques that I learned over the years. I also received a lot of support from family and friends, and I am a founding member and secretary of my local support group. This led me to volunteer for Fibromyalgia Action UK, where I now work as a part-time administrator. I also do my best to maintain my hobby of craftsmanship: crochet, knit, cross stitch and make cards.

I think that every person with fibromyalgia has its part to play by telling the public about the condition and how it affects us. Each of us has different symptoms and is affected to different degrees, and education and awareness is the way to make others understand what we are going through.

What gives me hope is that in the future the cause will be known and there will be effective treatments. At the moment, symptoms are treated individually and services depend on where you live. And there are still too many health professionals who disdain the condition.

One day, I hope that when someone asks what is wrong and responds: “Fibromyalgia”, I will not receive the answer, “Fibro, what?”