A life of pain with fibromyalgia

‘I don’t know what it’s like not to feel pain. With fibromyalgia, you’re always in pain. There are so many symptoms that go with it. There’s inflammation, muscle spasms, tremors, fatigue, insomnia, depression, irritable bowel syndrome, restless legs and sensitivity to noise and touch. There’s also fibromyalgia fog which is short-term memory problems and difficulty concentrating. I’ve walked out of my house, leaving my keys in the door.

“I’m 34. I was diagnosed with fibromyalgia in 2003. I had an accident in a nightclub where I slipped and fell. I was told I had torn ligaments and a sprained ankle. Then I was told I had complex regional pain syndrome which would burn itself out.

“But the pain I had continued to spread. I did a lot of doctor shopping. I’ve had doctors tell me the pain is in my head. It was very hard to get a diagnosis.

“You have to have chronic widespread pain around the body for a certain period of time. I was finally diagnosed by a rheumatologist who is now my specialist. The hardest thing I was told is that there’s no cure for fibromyalgia. I had to learn to accept it. But it’s very hard to be told you have an invisible condition. I look perfectly healthy. But people don’t know the pain I go through daily. What varies is the level of pain and what I can tolerate.

“I’ve tried everything. Now, I use painkillers, sleeping pills, Valium, a muscle relaxant and anti-inflammatory gel when required. I also take a huge amount of supplements including multi-vitamins, cod liver oil and ginseng. I find alternative treatments very good. I respond best to an anti-inflammatory intravenous procedure. I get injections on my trigger points. My specialist does it for me and it gives me tremendous relief. But when there’s stress in my life, my symptoms get much worse.

“With fibromyalgia, I live in a world of ‘maybes’. Maybe I’ll be able to clean the house, go shopping, meet friends or even work again. People can’t understand why I sometimes cancel things at the last minute. It makes me feel guilty but I can’t predict how I’m going to be. When I wake up in the morning, it’s like rolling a dice, wondering where my pain is going to be and whether my back is going to swell up. Some days, I’ll walk around limping. The next day, I can be perfectly fine.

“I have great friends. If I go out clubbing, they’ll make sure there’s a chair for me if I need to sit down. I’m also lucky in that I have a great specialist and GP.

“I’ve done a pain-management course. It gave me more understanding of how pain works and what you can do to help yourself. Mindfulness, yoga and relaxation are all very important. With mindfulness, I have to listen to my body and know my limitations. It’s very hard to accept that I have limitations. I sometimes go over them but I pay dearly for it. I could have a flare-up that would last for weeks. I know I can overdo things but I’m young and still want to live my life. I asked a doctor at a conference why is it that when I go out and socialise and drink, my pain levels are lowered. I feel great but the next day, my pain levels go up through the roof. He explained that alcohol acts as an anaesthetic for fibromyalgia patients. But the next day, your body goes into shock because of the level of pain coming through.

“It’s very hard to keep down a job. I worked part-time for eight years in the box-office of the Everyman Theatre in Cork. The reason I was able to stay for so long was because my colleagues understood my condition and I was allowed to swap shifts at short notice if I was sick.

"I miss work but my fibromyalgia is worse now than it has ever been. The social welfare people are very strict. I was recently awarded an invalidity pension but that took years of being brought in and questioned. One doctor asked me what fibromyalgia is. The latest research from Dr Patrick Wood in America proves that it's not all in the mind. It's to do with a lack of dopamine in fibromyalgia sufferers which affects how we fight pain.

"The World Health Organization recognised fibromyalgia as a condition in 1992 but it's still not recognised in Ireland, which is appalling. There are people afraid to speak out and say they have it.

"I go online with the Cork Kerry Fibromyalgia Support Group. When I went to the first meeting, I went into a room and saw that everyone looked fine. But then, people started talking and I was delighted to meet them because they had the same illness as me. It's great to have the online support. I can rant, rave, moan and swap recipes. You have to have a sense of humour. But I've actually cried, watching people coming online, telling their stories which are often heartbreaking.

“Pain is your body’s way of telling you something is wrong. I knew there was something seriously wrong with me and I knew I wasn’t crazy. It can be devastating when people don’t believe me.”

In conversation with Colette Sheridan