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An all too common story of chronic pain

Published on 01 November 2011
Source: Arthritis Today

Hand with walking stickPeople with chronic musculoskeletal pain have different experiences but they often also have some experiences in common. The following is a made-up story by physiotherapist Gail Sowden based on the real-life struggles of many patients.

When pain began, Pat was hopeful that her GP would be able to get rid of it or would make a quick referral to a more specialist service. Her friends told her their stories of similar problems and how they were sorted out relatively quickly. The health care professionals that saw Pat spoke confidently of people they had treated who had had a similar problem to her and who by following one particular treatment or another had achieved great results.

Pat found that different health care professionals gave her different diagnoses, explanations and advice, which was confusing. She was aware that, like her, many people’s tests come back as relatively normal or don’t explain the amount of pain the person is in. Pat saw one clinician who she felt said, or implied, that the pain was imaginary or psychological or “all in her head”. This was very distressing and Pat felt angry about this for a long time afterwards. She had read on a website forum how people suffering with pain often experience many years where they feel they have not been heard, believed or taken seriously.

The pain didn’t lessen.

As well as conventional treatments, Pat borrowed or bought a variety of heating, vibrating and massaging gadgets and gizmos. She also tried different aids, appliances and adaptations (e.g. a walking stick) in an effort to try and reduce the pain. Occasionally they seemed to make things easier in the short term but she worried about becoming dependent on them or more disabled by them. As time moved on, despite these attempts to eliminate or reduce pain, Pat felt that the pain didn’t lessen or didn’t lessen for as long as promised. All these treatments and gadgets came at considerable costs in terms of money, dependence, side effects, time and effort as well as the emotional cost of managing the disappointment when yet another thing failed to deliver what it promised or what Pat had been told or had hoped for. The more time Pat spent trying these things, the less time she was able to spend doing rewarding and enjoyable activities.

Pat worried that if she did certain activities and her pain increased that this meant she was causing herself harm or damage. Not surprisingly, she tried to avoid doing these activities. She found that if she did less, sometimes her pain reduced for a short while - but this meant that she was doing less of the things that she enjoyed or that were important to her.

Being in pain started to affect Pat’s relationship.

The combination of doing less but still being in pain started to affect Pat’s relationship with her husband, and she found she was more irritable and short-tempered and that they were less able to do things together. Pat felt guilty when her husband or others did the tasks that she had previously managed. She didn’t want to lose her independence, and found on a good day that she would try and make the most of it, only to pay for it in terms of increased pain later. She found her concentration and problem-solving were not as good as they used to be, and worried that this might be related to all the pain medication she was taking.

Pat found that friends didn’t invite her out as much as before and she tended to say “no” to invitations, as she didn’t know how she was going to be one minute to the next. She didn’t want to let people down and worried if she said yes and went out that she would be holding the others back or would overdo it. She felt increasingly isolated and started to wonder if she might be getting depressed.

She hoped the answer was out there

In spite of all this, she continued to hope that the answer was out there and thought that if she just tried harder, demanded more, asked to see another professional, or invested in some other gadget she would find the answer. Increasingly, well-meaning relatives and friends suggested things or advised she see a particular complementary or alternative therapist or try some type of new, often radical treatment. Whilst some of these treatments felt nice and relaxing at the time, they failed to provide any long-term reduction in symptoms or increases in activity. Pat felt increasingly desperate as she thought about how things used to be and how her life seemed to be falling apart.

Pat had heard about different injections and operations and her new GP agreed to refer her to try some injections. Unfortunately, they didn’t work and although Pat was in severe pain she was told that she was not suitable for surgery. She was told that operations are only appropriate for a minority of people and that even in these people it might not help, particularly in the long term. In a way she was relieved that she wasn’t suitable for surgery as she was aware from previous abdominal surgery that she had had that there were potential risks and complications, no guarantee of success and often a long and difficult recovery period.

She started to lose confidence

The more she struggled to reduce or control her pain, the more she tended to avoid the things that were important to her, such as spending time with her family and friends, gardening, playing with her grandchildren, doing her hobbies and interests and going on holiday. She started to lose her confidence in going out of the house and in meeting people.

A pain rehabilitation centre

Pat went back to her GP and asked about other treatments. He suggested another course of physiotherapy but also mentioned a new pain rehabilitation centre that had opened. Pat was keen to find out more about what the new service could offer her and asked her GP to refer her to it. Pat attended the service and was assessed by a team of different clinicians. They spent time finding out about her pain and how it had affected her. They explored Pat’s current medication and her experience of treatments aimed at reducing or controlling pain. Pat’s experience was that these had not led to long-term reductions in pain or increases in functioning. Rather than repeat treatments aimed at getting rid of pain or at reducing pain that had already been tried and failed, they suggested a different approach that would involve rehabilitation to help her to do the things that were important to her in life, with the pain. Pat was sceptical at first as she felt she had already tried to do this and understandably she didn’t want to be in pain. They asked Pat to identify what she would like to be able to do in the future in important areas of her life, and outlined the purpose and structure of a group pain rehabilitation programme aimed at helping her to achieve her goals. Pat and the pain team thought that she would be suitable and might benefit from the group rehabilitation programme.

Pat attended the programme and felt that she had benefited from being with other people who had similar difficulties to her. The programme was hard work and at the end of it her pain was pretty much the same as before. However, she was able to do more of the things that were important to her. She had a better understanding of the choices available to her in a given situation and what to use as her guide in making decisions about what she did and how she went about doing it. She also felt less distressed by her pain and was less disabled. She was playing with her grandchildren again, socialising more and went on holiday for the first time in years. Overall, she felt she that she had a much better quality of life and that she, not her pain, was now back in charge of her life.

Not all patients with pain are suitable for pain rehabilitation programmes or would benefit from one and some patients do better having received one then others, but overall the results are good. Not all areas have access to a pain rehabilitation programme but your GP should know where your nearest one is located.

The above story is based, with the authors’ permission, on one written by Dr Kevin Vowles and Dr Miles Thompson in a book chapter in 2011 (Acceptance and Commitment Therapy for chronic pain. In L. M. McCracken (Ed.) Mindfulness and Acceptance in Behavioral Medicine: Current Theory and Practice (pp. 31-60). Oakland: New Harbinger Press).

Gail Sowden is a consultant physiotherapist with the Interdisciplinary Musculoskeletal Pain Assessment and Community Treatment (IMPACT) Service in Staffordshire and the Arthritis Research UK Primary Care Centre at Keele University.

Arthritis Research UK is producing an authoritative report on living with chronic pain, aimed at people like Pat. It will be available in 2012. See the next edition of Arthritis Today for further details.

Not all patients with pain are suitable for pain rehabilitation programmes or would benefit from one and some patients do better having received one then others, but overall the results are good. Not all areas have access to a pain rehabilitation programme but your GP should know where your nearest one is located.

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