Chronic Pain

Finding information

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 onlne.

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 onlinet. One 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 considerable with some having no HCP input at all. Most of the apps for pain management do no more than prompt the user for reports of pain, medication, mood, activity, etc. and then provide a graph of the information. Which some people may or may not find helpful, but experts worry that:
 
“In a population often desperate for a solution to distressing and debilitating pain conditions, there is considerable risk of individuals being misled.”*
 
None of the people we interviewed had used smartphone apps for pain management.
 
* Rosser BA, Eccleston C. Smartphone applications for pain management. J Telemed Telecare 2011;17:308–12.

Last reviewed May 2015.
Last updated May 2015.

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