Pain pattern no longer rules her life

​​​​​​​Although Katarina Wellington's fibromyalgia means that she is in constant pain, she thinks that life is great. Thanks to a new type of behavioural therapy developed partly at Karolinska Institutet, she has learnt to accept her pain and built an active and meaningful life once more.

Katarina Wellington. Photo: Ylva Sundgren

Text by Helena Mayer Published in Medicinsk Vetenskap (Medical Science) nr 2 2011.

42-year-old Katarina Wellington was finally diagnosed with fibromyalgia two years ago after suffering from constant pain around her body and severe migraines since childhood. As an adult, her work as a teacher became more or less all she could manage.

"I'd cut down on everything that was fun and social. I'd hurry home after work so I could do what I had to do before I began to fade. It was a constant battle against time and pain. My partner and my children also found it very difficult with me being so down."

Katarina has undergone countless medical examinations over the years. She has also "tried everything" by way of alternative therapies such as homoeopathy, crystals and healing, as well as intensive exercise and various diets.

"Conventional medicine is very much focused on handing out medicines and writing sick notes," she says. "It feels like nobody's ever tried to look at the whole, so I've had to try to put my pain into context myself."

Eventually the situation was so bad that Katarina was referred to a pain clinic. She was diagnosed with fibromyalgia and prescribed acupuncture and amitriptyline, an early antidepressant commonly used to treat migraine.

"It's working incredibly well. I've stopped having those terrible headaches and I've begun to sleep properly again."

Got tools to learn to accept her pain

Katarina Wellington also took part in a research study at Karolinska Institutet of a technique called Acceptance and Commitment Therapy (ACT). This is an extension of cognitive behavioural therapy (CBT) and is used mainly for rehabilitating people whose lives are dominated by long-term, chronic, debilitating pain. ACT gives patients the tools to learn to accept their pain and find ways to lead a more meaningful existence. Two of the five studies underpinning ACT's acceptance as an evidence-based therapy for long-term pain have been performed at Karolinska Institutet.

In the study in which Katarina Wellington was involved, participants learned about the mechanisms behind pain. They also performed various exercises in relating to pain in an accepting way and allowing it to be there without doing anything to take it away or reduce it. Goal formulation and mindfulness training were also included: learning to be in the here and now. The sessions lasted a total of 12 weeks and began and ended with an MRI scan of the brain. At a follow-up visit after four months, participants said that the pain was still present, but no longer worried them or stopped them from getting on with life.

Rikard Wicksell. Photo: Martin Stenmark

"If you can't do anything about the pain itself, it makes sense to look at what you actually can change in order to make your life more like you would want it to be. We're shifting the focus from how the patient feels to what the patient does," explains one of the researchers behind the study, psychologist Rikard Wicksell from the Department of Clinical Neuroscience at Karolinska Institutet and the Behavioural Medicine Section at Karolinska University Hospital in Solna. He says that patients often allow their pain to restrict their lives.

"Many patients have a clear autopilot which avoids things that cause them pain," he says. "In the short term, you might think 'If I don't go to football, my back won't hurt as much.' This works temporarily, and you avoid the risk of the pain growing. However, these short-term gains tend to lead to a downward spiral of avoidance."

Paradoxically, says Wicksell, pain patients often score their pain at the same level today as they did five years ago, even though they have restricted their existence from meaningful to "just" staying home and taking painkillers.

"We tend to ask 'What kind of life do you want to lead, given that you will probably be in pain either way?', because that takes us onto a very different path. It might sound harsh, but it's based on fact and is presented sensitively. It's all about getting the patient to ask `What can I do to stop the pain ruling my life?'"

The pain pattern sends out negative messages

Wicksell also calls this autopilot "the pain pattern". This sends out negative messages such as "I can't do that, it'll hurt too much." There are also, figuratively speaking, anxiety patterns, tiredness patterns and so on, which make it hard for pain patients to return to an active and meaningful life. Some situations can set off a whole chorus.

The method has completely turned Katarina Wellington's life around.

"I'm strong now and I've learnt to live with the pain," she says. "Now that I've identified what's important to me, it's easy to steer my thoughts in the right direction when the pain pattern comes. I'm still in pain the whole time, but I'm no longer frightened and I've given up looking for cures. Instead I do what makes me happy and focus on things that I can actually do something about."

Text by Helena Mayer Published in Medicinsk Vetenskap (Medical Science) nr 2 2011.