Living with fibromyalgia

Cindy Park.

Cindy Park.

Cindy Park was aged 31 when she was diagnosed with a condition which she says today has robbed her of four years of her life.

The mother-of one who lives in Oranmore had always been in good health. However, after a gall bladder operation she developed complications and later went on to be diagnosed with fibromyalgia, a long-term condition which causes widespread pain all over the body and extreme tiredness.

“When it started it was as if I had flu-like symptoms,” she says. “It began with constant pain in my joints, stiffness and tiredness. My bones were always cold and my memory was affected. I began forgetting things and I couldn’t get my words out.”

Cindy, who cares for her mother who is disabled, attended her GP a few weeks later. He prescribed medication for her and referred her to a rheumatologist. As a public patient it took a year to get an appointment with the specialist.

“My GP - Dr Adrian Carney in Roscam - is fantastic. I cried when I went to him because I didn’t know what the hell was going on. He started me on medication for the condition which relieved a little of the pain. But as the months went on it stopped working.

“When I got the appointment later with the rheumatologist I was told I had fibromyalgia. I had never heard of it before, I couldn’t even pronounce it. I said it’s not possible, I couldn’t have so many symptoms. But they said ‘yes’. They gave me a leaflet to read and increased my medication dose and started me on anti depressants. I cried all the way home. I was on the phone to my sister and I couldn’t even talk.”

Stiffness in shoulders

At the start the pain affected her legs mainly, then her back and she had stiffness in her shoulders.

“It is a stabbing, shooting, burning pain. There are so many symptoms, such as irritable bowel, bladder problems, I’m sensitive to light and heat and my legs feel as if they are going to collapse. There is chronic fatigue too. I don’t sleep properly at night either. If you do sleep eight hours you feel as if you haven’t slept 10 minutes. You are tired all day, you have this overwhelming tiredness. Weight gain is a huge part too. I’ve gone up five sizes. That’s one of the hard things due to the medication.

“The other main symptom is called fibro fog, there is definite memory loss and poor concentration. Our words come out wrong. I said to my son one day ‘Go get your purse’ when I meant to say ‘schoolbag’. Words and sentences can be twisted, also. I’d be trying to say ‘I’m going to the shop’ but I’d say ‘I’m shop going’. The thing about fibromyalgia is that you don’t know from day to day how you are going to be. I can’t plan anything.”

Cindy feels the condition has taken away four years of her life. “I feel I’ve lost everything in my life due to ill health. Basically, I don’t go anywhere, I’ve no life. I always cancel on people. I’ve kind of mellowed a bit depression wise, I had no get up and go before. I feel sad and down like there is a heavy cloud [over me]. When it lifts it’s such an amazing feeling. The pain and fatigue continues. I try walking for five minutes but when I’m walking I feel like I’m having a heart attack. You feel like your legs are going to snap. When I’m having a shower my feet are killing me, I can’t stand for long. I can’t hold something in my arm for a minute or two or I’ll have a dead arm.”

Alone and isolated

A six week fibromyalgia self management course run by “two wonderful” nurses at Merlin Park Hospital was of tremendous benefit to her, she says. She met others with the condition and no longer felt alone and isolated.

“The course was unbelievable, it was fantastic to meet people who knew what you were going through. The best feeling I got was sitting in a room with these 20 people and every single one of them knew about the tiredness and the other symptoms. I never knew anyone with the condition before. There are people a lot worse than me, I’d be in the middle [range].”

She says there is no cure for the condition but she is committed to doing everything in her power to get her life back. She says it is hard for her 14-year-old son who is a great support to her. “He is amazing.”

She is angry that she has fibromyalgia, that she has “lost” her life, that there is little support for sufferers and that some people do not understand the limitations of the condition.

“I wouldn’t wish this on my worst enemy. I look back and I keep thinking I looked good [in the past], I was slimmer, I looked better, I was bubbly and had a social life. What I lost was me.

“I worry about the future. Am I going to be like this for ever? Will I get the weight down? Will I get a job? Will I ever meet someone to have a relationship with? I can’t do this for life.”

Support group

Concerned at the lack of support for sufferers she was encouraged by “two wonderful nurses Nano and Anne-Marie” at Merlin Park Hospital to set up a fibromyalgia support group. The first meeting attracted 130 people aged from 16 to 70. While most were women there were up to 20 men.

“It was unbelievable. I thought there would be 20 or 30 people there. They came from the whole west. I’ve the biggest support group in Ireland.”

The group meets on the first Tuesday of the month with a choice of meeting times - 11am to 1pm and 7pm to 9pm at the Cheshire House, Merlin Park. The next meeting will take place on Tuesday December 6. After this meetings will be suspended until February. Every fortnight after the monthly meeting members get together for a chat.

“We need a bigger place, if there was a room that wasn’t needed in a hotel. I need volunteers too to organise the meetings, help with teas and coffees, do photocopying stuff. The feedback I’m getting from the meetings is great, they are a lifter. People are saying, ‘Thanks Cindy, I don’t feel alone anymore’. I’m grateful to so many people, especially Rachel Kerrigan and Colette Coyne, who are members of our support group, and my sister Colleen Higgins. They have all been great. Setting up the group is the best thing, bar my son, I’ve done in my life. I’ve met the most amazing people.”

Cindy Park can be contacted at (087 ) 7725379.

What is fibromyalgia?

Fibromyalgia is a condition in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues.

It has also been linked to fatigue, sleep problems, headaches, depression, and anxiety. While the cause is unknown possible causes or triggers may include physical or emotional trauma, abnormal pain response - areas in the brain that are responsible for pain may react differently in fibromyalgia patients - sleep disturbances or infection, such as a virus, although none has been identified.

Fibromyalgia is most common among women aged 20 to 50 years. Pain is the main symptom. It may be mild to severe and may feel like a deep ache, or a shooting, burning pain. Sufferers tend to wake up with body aches and stiffness. For some, pain improves during the day and gets worse at night. Some patients have pain all day.

Pain may get worse with activity, cold or damp weather, anxiety, and stress. Fatigue, depressed mood, and sleep problems are seen in many patients with fibromyalgia. Many say that they cannot get to sleep or stay asleep and they feel tired when they wake up. Other symptoms may include irritable bowel syndrome, memory and concentration problems, numbness and tingling in hands and feet, palpitations, reduced ability to exercise and tension or migraine headaches.



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