Pain – The Patient Voice

Pain – The Patient Voice

Pain – The Patient Voice

There is so much to share about pain that I couldn’t fit it into a single post (click here for my post on Pain Science). In particular, there are so many great resources on persistent pain, I have found it virtually impossible to whittle them down.

In this blog I have chosen to focus on the patient voice/lived experience as I think both practitioners and those living with pain can learn so much from the patient advocates who generously share their experiences.

Many of these patient advocates have provided excellent resources to help bridge the gap between patient and practitioner, helping each to learn from the other. Increasingly, the patient voice is being included in research about pain which is a big step in the right direction.

Whilst everyone’s story is different, I have definitely noticed some common themes in the blogs and resources created by people living with persistent pain:

  • pain is real
  • it really helps to understand about pain and to learn that it is a complex and sensitive system which is trying to keep you safe
  • everything matters when it comes to pain; it is influenced by everything else happening in your life such as sleep, stress, relationships etc
  • there is hope, things can change
  • you need to work in partnership with your healthcare providers
  • in order to get better, you need to be an active participant in your recovery – but with support and guidance from your family, friends and healthcare team
  • you need to feel that you are in control of your recovery and your life, rather than your pain calling the shots
  • everyone’s experience is different – what does recovery mean for you?

A persistent pain problem can be difficult to understand and manage on a daily basis. As far as I can gather, everyone seems to be drawing the same conclusion, namely, that the way to make meaningful change is through supported self-management. By supported self-management, I mean that your practitioners are there to encourage and help you, not that you are left to go it alone.

Pretty much everyone also agrees that movement is helpful but, for many people, even the thought of it can be frightening. If you want to start in a slightly different way, Betsan Corkhill has done some amazing work on the therapeutic benefits of knitting (confirming all my biases!).

I am sharing some of my favourite patient voice resources below, if you would like to delve deeper.

In this Flippin’ Pain webinar people living with persistent pain share some the important things they have learned along the way that they wish they had known sooner.

Read how Tina has made sense of her pain by working in partnership with her physiotherapist so that she can continue to “work and live well”.

Empowered Beyond Pain is a fantastic series of podcasts. Each episode is full of practical tips and insights to help increase your understanding and shift your behaviours.

Connect

Pete Moore’s Pain Toolkit™ contains techniques to help you learn new, or use old, skills to help you manage pain in ways that work for you.

Follow

Joletta Belton is a patient advocate who is passionate about sharing her experience to help others and writes regular informative blogs. She used to be very active on social media but it looks like she might be taking a break currently.

Email Me

If you would like any further information or resources, or have any suggestions on how I could improve this blog, please let me know.

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If you think someone you know would benefit from this blog, you can forward it here.

All content and information on this website is for for informational and educational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your GP or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment and before making any decisions in respect of your healthcare.

Persistent Pain

Persistent Pain

Persistent Pain

We see a lot of patients in clinic with persistent pain (pain which has lasted more than three months, also referred to as chronic pain). Often they have been in pain for years and cannot see a way for things to change. Understandably, they feel something in their body must be permanently damaged, but this is very rarely the case.

Over recent years, science has changed what we know about pain and we now know that persistent pain is usually not associated with tissue damage.

Recent research has shown us that pain is a protector, not a detector.

If pain were simply a detector, we would always and only feel pain when tissues are damaged, with the pain directly proportional to the extent of the injury.

However, as a protector, pain is a decision made by our brain outside of our conscious control, to tell our conscious mind that we are in danger and to motivate us to protect our body. If another, more important, survival priority trumps this the brain might decide not to create pain, or to delay it until later. For example, if you twisted your ankle and were lying in the road, your ankle probably wouldn’t start to hurt until you had moved yourself out of the way of an oncoming bus.

In many cases of persistent pain, the initial injury has long since healed but the brain has become overprotective and pain becomes wired in. This is absolutely not to say that pain is all in your head. It’s real, but it’s a wiring issue.

This might sound permanent, it isn’t. Your system rewired to long-term pain so you can rewire out of long-term pain.

As pain is our body’s response to danger, anything that increases cues of safety to the brain reduces pain. In order to do this, you need to persistently and consistently provide your system with evidence of safety and reduce the evidence of threat. You need to gradually calm down an overprotective brain,  letting it know that the body is safe. Conversely, anything that increases threat and reduces feelings of safety (such as stress or poor sleep) can worsen persistent pain.

So, what do you actually need to do? There are evidence based strategies for the management of persistent pain:

  • Small “lifestyle” changes can make a huge difference by reducing stress, increasing feelings of safety and reducing inflammation. As with any behaviour change, make small changes that feel easy:
    • all movement helps eg walking, swimming, T’ai Chi – even knitting!
    • breathing exercises help to reset the nervous system. There are some simple techniques for you to try in this article
    • dietary changes – keep it simple – add just one more serving of plants to every meal
  • In order to rewire the system, you need to understand it. Hopefully this blog has got you thinking about pain as a protector and you can learn more from Flippin’ Pain and Curable (in the resources below).
  • Scientists are now looking at using virtual reality to tap into the power of the brain but you don’t have to go all high tech. The Curable app (see below) contains visualisation exercises to help manage pain.

It’s not necessarily easy to rewire the brain but it is certainly possible. We are here to support you as you learn to self-manage persistent pain.

I am sharing some of my favourite resources if you would like to delve deeper. This is a subject I find fascinating and there are a lot of great resources – so many in fact, that I have written a separate post with resources created by people living with persistent pain. You can access it here.

Lorimer Moseley is a leading pain researcher. This 5 minute video explains how pain protects you from harm.

Deepak Ravindran is an NHS pain consultant. His book draws on his vast experience to give you the tools to manage your pain.

In this pod, Dr Rupy chats to Dr Monty Lyman about all things pain and how his views changed as a result of personal experience.

Connect

Download the Curable app (we can set you up with a 6 week free trial) and follow the recovery program of easily accessible education and exercises to help you break the pain cycle and find relief from persistent pain.

Follow

Flippin pain is a public health campaign encouraging people to reframe pain – you can follow them on all social media channels or check out the helpful resources section on their website including a great webinar on lived experiences (under events).

Email Me

If you would like any further information or resources, or have any suggestions on how I could improve this blog, please let me know.

Share Blog

If you think someone you know would benefit from this blog, you can forward it here.

All content and information on this website is for for informational and educational purposes only. No material on this site is intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your GP or other qualified healthcare provider with any questions you may have regarding a medical condition or treatment and before making any decisions in respect of your healthcare.