When life is just a pain

Tue, Jan 15, 2013, 00:00

MARTINA LEAHY:After being diagnosed with fibromyalgia two years ago, a mother-of-two has learned to live with the pain

You know when you have a bad flu and you wake up in the morning feeling stiff and achy? I feel like that every morning. I get up feeling like I haven’t slept at all even though I have usually had a good night’s sleep.

This time about two years ago, I started to get severe back pain. I couldn’t attribute it to anything like lifting something heavy or a fall, it just came out of nowhere.

My GP sent me to a rheumatologist who gave me epidural injections to ease the back pain but they did not help and the pain started to spread around my body into my arms and hands, my hips and legs.

I was brought into hospital and diagnosed with fibromyalgia in February 2010. Fibromyalgia is a chronic condition (which means I will have to live with it for the rest of my life) which affects all the muscles in my body and causes chronic pain and fatigue. The list of symptoms is endless, but they are the worst two for me.

I have widespread pain all over my body and have to take painkillers and medication every day. Even with the medication, I still ache every morning when I wake up. The fatigue is terrible too. Every morning after I drop my five and a half year old to school and my two and a half year old to the childminder, I have to go back to bed for a couple of hours before I do some exercise.

On top of this, I get flare-ups every so often when the pain gets worse which can last two to five days. Sometimes the pain gets so bad that I can’t move with it and have to stay in bed all day.

Terrible guilt

My youngest child was only four months old when I was diagnosed and I feel terrible guilt that I was not able to hold him in my arms. Even if I was only going into the shop for a newspaper or a pint of milk, I couldn’t carry him in because my muscles were so weak that he would have been hanging out of my arms by the time I got out.

The medication makes me sleep very heavily so I could not hear him crying at night and my husband had to get up with him. Thank God he was a good child.

My mother-in-law had to mind him for me when he was younger. I am lucky to have great family support around me. I have two sisters and two brothers living within a three-mile radius with their families.

There is no one cause for fibromyalgia, the doctors can’t tell you why you got it but from my own research and talking to people who have it, it seems to be triggered by some trauma or stress like a car accident or depression. I went through two very difficult pregnancies and suffered pre-eclampsia which I reckon brought it on in my case.

I worked in insurance for 12 years and it was a really difficult decision for me not to go back to work and a big step to take in the current economic climate.

Self-management programme

After giving up work, I decided to do a Living Well with Arthritis programme with Arthritis Ireland. It’s a six-week self-management programme run over two and a half hours one evening each week. They literally go through everything from pain management and depression to healthy eating, keeping fit and balancing rest with activity.

Every Sunday, I do up my plan for the week. Before, I would clean the house from top to bottom in one day but I can no longer do this, so I might do the living area on a Monday. I did get very down about it initially. It’s like grieving for the life you had and can’t have any more.

I had never even heard the word fibromyalgia before I was diagnosed with it.

I have had great support from my husband, family and friends and outside that, there are support groups like Cork Fibromyalgia Support, FibroIreland and Arthritis Ireland.

The symptoms of fibromyalgia can dip and soar but this is something I will have to manage for the rest of my life. By exercising, I can keep my muscle strength from deteriorating. I swim and walk on alternate days and also do pilates which is great for strengthening the core muscles. I do special exercises with dumbbells for my hands twice a day and I eat healthily.

When I had to give up work, I found it very hard being at home all the time so I did a diploma in image and fashion styling at Cork Institute of Technology. I always had an interest in fashion and had the opportunity to do it when I was off work. I qualified as an image consultant and have done a bit of charity work since. It’s something I would love to work at in the future on a part-time self-employed basis.

Tough two years

Being a mother of young children on top of my illness, it’s hard to juggle everything. We have to send the kids to the childminder every day which is a big financial burden as we also have to pay for my medication and GP and consultant visits. Fibromyalgia has been recognised as a long-term illness by an EU directive but we are still trying to get it recognised here in Ireland. Trying to keep on top of it all is so hard.

It’s been a very tough two years but at this stage I have come to accept my illness and learnt to manage it and I’m in a happy place now.

Fibromyalgia

The facts

Fibromyalgia is a syndrome which is characterised by widespread muscle pain and fatigue. People who have fibromyalgia may also experience aching, stiffness and tiredness, which gets worse with activity. Poor sleep quality and waking up without feeling refreshed is very common. Simple chores or activities may prove difficult to undertake because of muscular fatigue or lack of energy.

Many people with fibromyalgia can experience emotional distress including anxiety and depression and some also experience cognitive and memory problems (sometimes referred to as “fibro fog”). Women are more likely than men to develop fibromyalgia and nine out of 10 people with fibromyalgia are women.

Although it is more common to be diagnosed between the ages of 50 and 70 years, people of all ages have been diagnosed.

Many people associate the development of fibromyalgia with a physical or emotional trauma such as an accident or bereavement or with an illness.

There is no cure for fibromyalgia, but the symptoms may be managed very successfully. It can be treated with a variety of medications developed and approved for other purposes including painkillers, non-steroidal anti-inflammatory drugs (NSAIDs), antidepressants and other medications.

People with fibromyalgia may also benefit from physiotherapy, from learning pain management and coping techniques, and from properly balancing rest and activity. You can learn more of these skills on one of Arthritis Ireland’s self-management programmes. For more information, go to arthritisireland.ieor contact the Arthritis Ireland Helpline on LoCall 1890 252846 from Monday to Friday, 10am to 4pm.