Learning to deal with arthritis pain

WHEN THE pain from her arthritis got so bad that her GP told her she would have to be admitted into hospital, Laura Hickey (now 25) decided enough was enough. It was time for her to wrest back control from the disease that had taken over her life since she was a child.

“I was in college in Dublin at the time studying for my master’s in finance when I had a severe flare-up of arthritis in my upper body – my neck, shoulders and hands. It was going on for four or five weeks and when my GP told me that there was very little he could do and I would have to be admitted to hospital, I was terrified.

“I was on the maximum dose of steroids, but I was still screaming in pain and couldn’t sleep at night. The stress was taking a huge toll on my body, both physically and mentally, and I found it hard to see any light at the end of the tunnel.”

Laura made the decision to switch to a new consultant rheumatologist at the Mater hospital, who put her on a different medication regime, which has worked very well for her since. She has been in less pain in the past two years than ever before in her life.

“After that bad flare-up I was feeling very lonely and isolated. I had heard about the Living Well with Arthritis course run by Arthritis Ireland, and decided it was time I learnt more about how to live with my chronic illness. One thing I learned was that I have a lot of control over the disease and how it is managed. The course also made me realise for the first time since I was diagnosed that I wasn’t alone and that other people my age are experiencing this.”

Now when Laura is in a lot of pain she tries to use distraction and breathing techniques. While meditation hasn’t worked for her, she knows now that she needs to create some “me time” to relax, whether that be listening to music, reading a book or going for a massage, and she has incorporated this into her daily life.

During the course of the six-week programme in Dublin, Laura began to make some good friends who really understood what it was like to live with arthritis. She was diagnosed with juvenile arthritis at the age of 10, but had lived with the pain of the disease for a number of years before diagnosis. Having found these friends, she decided to set up the Young Arthritis Network through Arthritis Ireland in October 2010.

The network is run through Facebook and Twitter, and Laura also writes a blog. The Dublin and Cork groups run regular walking clubs, which Laura hopes will expand to the rest of the country, and a yoga class for young people with arthritis has recently started in Dublin.

“My life has changed so much over the past year. I now have a network around me I can call on if I’m having a bad day. I’ve learned to look after number one in that I find a balance between work and rest. At times I still get frustrated and annoyed, but for the most part I am positive, and I have taken control of my arthritis.

Course of action: Managing your arthritis

Arthritis Ireland has just published new research which reveals that non-medical treatments learnt on the Living Well with Arthritis course can boost the performance of medication to reduce pain and fatigue in people suffering from the condition.

In a nationwide survey, conducted by Arthritis Ireland, the majority of the 400 participants said they had noticed that little things they learnt on the course, such as simple pain-management techniques, had complemented their medication and made a big difference to their quality of life.

The results of the study show that, on completion of the self- management course, more than half of all participants improved their ability to cope with pain by 50 per cent; all participants increased their amount of regular exercise by 72 per cent; and improved their attitudes towards living with their condition by 63 per cent.

The concept of “self-managing” has been gaining in popularity in Europe and the US. This is essentially a programme of non-medical interventions, designed to complement the medical treatment of arthritis with simple but effective techniques.

Delivered in Ireland by Arthritis Ireland, the Living Well with Arthritis programme has been slow to gain momentum in Ireland. Only a fraction of Irish people with arthritis (just over 2,000) have so far completed the programme since Arthritis Ireland introduced it here three years ago.

Arthritis affects one in five people in Ireland – 840,000 people nationwide. It is an inflammation of one or more joints that results in pain, swelling, stiffness and limited movement.

There are more than 100 different types of arthritis, and these can affect people of all ages, from babies and toddlers right through to those in their adult years. Sixty per cent of people with arthritis are aged under 65.

The creator of the programme, Prof Kate Lorig of Stanford University, California, urges Irish people with arthritis not to let their perceptions about non-medical disease management get in the way of them being able to live a normal life.

“Ireland is only beginning to embrace the concept of self-management. Let me be clear – this is not support or group therapy. This is a scientifically structured education programme, designed on empirical evidence, and has been proven to be an essential part of effective arthritis treatment that actually improves the performance of medication. We see people able to do things that they couldn’t before, related to improvements in mobility and mood, and we see improvements in their quality of life.”

The programme is delivered over a six-week period for one evening a week. Participants learn practical techniques to help deal with the daily challenges that their arthritis presents, including cognitive pain-management skills, coping with fatigue and planning for setbacks.

There are also sessions on healthy lifestyle and the importance of weight management in arthritis; managing your relationship with your healthcare team; dealing with negative emotions such as frustration, anger and depression; and exercise techniques for weak and damaged joints developed by physiotherapists.

While many people with arthritis think that if exercise hurts them, they should not be doing it, Prof Lorig stresses that in arthritis the only exercise that is dangerous is “not doing anything”.

“No matter when people start the Living Well with Arthritis programme, it’s a good time. For young people with arthritis, starting earlier is better, because it means less time to be really miserable, but any age is a good time to start managing your own disease,” she says.

The cost of the course, including a copy of The Arthritis Helpbook, is €30 to Irish participants – the real cost of the programme is €600 but the HSE is footing the rest of the fee.