Chronic Pain

Finding information about chronic pain

Most of the people we talked to had looked for information about such topics as causes, treatments, how to live with chronic pain, advice about medications, side effects and withdrawal, or even how to make sense of the terms their doctors used.

Sometimes health professionals had pointed them to useful resources, while others had learnt a lot by joining support groups, calling telephone helplines or searching on the internet.

Although some doctors were interested, helpful and receptive to ideas that patients have found in newsletters, or online, others were criticised for not seeming to understand or be able to explain about chronic pain.

Some people with chronic pain suspect that doctors see them as 'heart sink' patients, for whom little can be done. A feeling that they had been 'abandoned' prompted some to find out what they could do for themselves.

One man described how his pain had encouraged him to start to read books - which was a new experience for him. Others subscribed to newsletters or had found interesting programmes on the television. Many of the people we talked to had searched the Internet, although in some cases they hadn't found anything at first.

People often used the internet to look for medical facts and information about other people's experiences. The internet could be useful when making decisions about surgery and to make sense of what the doctor said, when finding out about recovery, when financial and benefits advice was needed and to do their own research into their condition.

One man used the internet to find out what the term 'chronic pain' meant and a woman pointed out how important it was to hear about the negative as well as the positive online.

Chat rooms and forums were also widely used for support (see also 'Support groups'). One woman discussed the pros and cons of the forum approach, which had been useful to her at some stages but not others.

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Although the internet was highly valued, some were concerned that they might get incorrect advice. One man who'd looked for information online concluded that it was dominated by drug companies, which he did not trust, and American experiences, which he did not find relevant.

Some (including a couple of regular internet users) were surprised to hear that there might be information about chronic pain online. One person thought it was too “amorphous” a category to be easily searchable on the internet.

A few people said that they had never looked for information about chronic pain. Reasons included preferring to do what the doctors said and a belief that everyone's pain is too different and individual for general information to be of any use.

Since 2007 there has been a rapid growth in smartphone usage and development of smartphone applications ‘apps’ some of which are aimed at people with pain. There is currently very little regulation of health-related apps and the amount of health care provider (HCP) input can vary considerably with some having no HCP input at all. The NHS Apps Library beta was launched in April 2017 to help patients make better choices about the digital health and care tools they use but it does not currently list any pain management apps and is still in development.

Last reviewed August 2018.
Last updated August 2018.

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