Understanding Persistent Pain for those who don’t have it

Thank you for taking the time to read this document and being interested in the content provided.

You have been given this information sheet because you are a family member, friend, or colleague of someone with persistent pain.

Many of us have experienced certain types of pain that can occur in life such as headaches, ankle sprains and low back pain among others. Whilst they can be painful and disruptive, the majority will resolve with time, reassurance and by staying active.

However, for some people, like the person giving you this information sheet, pain can persist for several months and years and may not be responsive to time and medical input.

Here are some answers to some frequently asked questions:

So does this mean persistent pain is all in their head?

No. Pain is a whole body experience and although the brain plays a large role, the entire nervous system is involved in what we feel and experience.

Is it normal that they for to seem fine one day and really struggle the next?

Yes. An individual’s pain is influenced by a variety of factors both inside and outside of the body, hence it is quite normal for it to be up and down over time.

Won’t another scan find out what is wrong?

Sadly, scans and other types of medical imaging are not proving as useful as we once thought they would be. It is likely the person who gave you this sheet has already had a variety of investigations, which have helped confirm their diagnosis, and unless they have any significant change to their symptoms, further investigations can be detrimental.

Surely medical advances and doctors can find a cure?

Many types of drugs and injections are very effective in the short term at reducing pain. However, they are much less effective in the long term. Instead, physical and psychological therapies are more effective and may provide help with managing persistent pain when a cure is not available.

Will they be like this forever?

Hopefully not. Although we cannot predict any changes to the actual pain levels, many people with persistent pain improve their overall quality of life (for example, increase their daily activity) by following the various suggestions over time:

• Pacing themselves and avoiding pushing through pain[MC1] [WB2] to get tasks done.
• Finding a physical activity they enjoy doing on a regular basis
• Actively prioritising relaxation techniques
• Plus many more individual suggestions that may be made.

What can I do to help?

Be flexible

Due to the variability of persistent pain, there will be days when someone with it can do a lot, and there will be days when they will struggle. We know that if we can keep someone doing their day-to-day activities (such as work) it is much better for their overall well-being. However, they may require certain adaptations or more rest breaks on days they are struggling which they may discuss this with you.

Be available

Having persistent pain can be psychologically draining, and sometimes those with persistent pain need psychological as well as physical support. Just talking to and discussing with someone various aspects of life can be of significant benefit.

Be supportive

Those with persistent pain should be encouraged to work towards goals and values that are important to their individual aspirations. You can be reassured that doing so will not cause them any further structural damage or injury. Plus, by supporting them working towards their aspirations could give them more motivation and ability to achieve these goals. They will let you know what help they need (if any).

There can be a personal impact on those supporting others with long term disability and persistent pain and you may like to consider your own needs as well and perhaps access your own support. You can discuss this with their GP or practice nurse, to find out more about support options, such as counselling, as appropriate.

Where can I find out more information?

There are several websites available, some of which listed below, which can provide you with more information about persistent pain:

The Pain toolkit (opens in a new tab) – a website run by someone living with persistent pain that reviews pain management tools and links to Twitter for the latest research in chronic pain and other helpful resources

healthtalk.org (opens in a new tab) – videos of people’s experience of living with chronic conditions as well as their experience of the management tools

Pain concern (opens in a new tab) - links to pain management tools and ‘Airing Pain’ (audio podcasts on different topics including the latest research and pain management tools; run by a person with chronic pain (fibromyalgia) for people living with pain)

Living well with pain (opens in a new tab) - a website run by someone living with persistent pain (back pain and sciatica/neuropathic pain); information on pain management tools for patients and healthcare professionals

My Live Well with pain (opens in a new tab) - a website containing information about self-management for people living with chronic pain.

Flippin Pain (opens in a new tab) – a various resources from a UK public health campaign regarding persistent pain.

Carers Trust (opens in a new tab) - Charity providing support for those who care for others.