Around 50% of people with a spinal cord injury experience neuropathic pain. In this section, we have compiled a number of different resources which explore the effects of pain and how people manage it. These include personal perspectives, professional guidance, exercises and other techniques. We can also signpost you to other organisations that may be able to help with pain management. Click on any of the links below to view these resources in more detail.
Living with pain
We have a video interview with three people who experience pain on a regular basis, discussing how they manage and accommodate pain in their daily lives.
Let’s Talk Pain Management: Part 1
Transcript of different questions and issues discussed
0:15 – What are the pros and cons of medication?
7:17 – What is it like to live with pain?
11:48 – How do you explain pain to your friends and family? What have been the most and least effective ways to explain your pain?
18:21 – How do you exercise when you experience pain regularly?
23:06 – How do you manage your pain while working/volunteering?
27:49 – What compromises have you had to make to accommodate your pain?
32:14 – What words and physical descriptions do you use to describe your pain?
41:47 – Finding fulfilling activities can distract from pain – what activities do you do to switch off from pain?
Let’s Talk Pain Management: Part 2
Transcript of different questions and issues discussed
0:09 – What’s the most important thing that you’d like healthcare professionals to understand about pain?
9:36 – How do you pace yourself on a daily/weekly basis? And do you take time for rests during the day or for whole days?
15:00 – Pain is sometimes hard to understand because it’s not visible. What kind of attitudes have you encountered towards your pain, and how do you deal with them?
19:52 – What difficulties have you encountered with getting appropriate support for your pain from healthcare professionals?
26:38 – What activities would you recommend to someone who is newly injured to help deal with their pain?
30:18 – What potential doors have been opened by your experience of pain?
Q&A with pain specialist, Dr Jasmine Hearn
Dr Jasmine Hearn is a chartered psychologist and lecturer, specialising in pain management for people with a spinal cord injury. She shares her views and experience with us.
What percentage of people with a spinal cord injury experience neuropathic pain and what do we know about it?
Studies vary on an exact number, but around 50% of people with a spinal cord injury experience neuropathic pain.
People describe this pain as sharp and sudden, like a burning or electric sensation, or even like pins and needles. As part of a series of interviews I organised during my PhD research, one person described it as feeling like sitting in a pit of fire, while another said it felt like someone was pouring a kettle of boiling water over their legs.
Neuropathic pain is caused by damage to the spinal cord. The brain sends messages down to the legs and feet, but it doesn’t receive an appropriate response as the pathways are damaged. Some messages might be able to get through, but the brain interprets these as pain. That’s not to say that the pain experienced isn’t real. It’s absolutely real. It’s just that the brain is misinterpreting the signals.
What different factors affect people’s perception of pain?
Quality of life, mental health, social support, physical activity, and where our attention is focused (such as when we are engrossed in a book or watching TV) – these can all influence someone’s perception of pain.
Being able to continue with your life and engage in meaningful activities is very important. If you couldn’t return to work, for example, you might have less opportunities to socialise and feel like you lack a sense of purpose. These factors can all influence your experience of pain. That’s why it’s really important to find fulfilling activities that you can focus your attention on.
Generally, the people who have a good support network, an active life, and a positive outlook, are more likely to accept the existence of pain and find ways to manage it.
Of course, we can’t say for certain that having a positive outlook means you won’t experience severe pain, or that a less positive outlook means you will have higher levels of discomfort.
Everyone’s experience is unique and that’s what makes it a challenge to research. Pain is very complex and we’re only starting to better understand how it affects people.
What different treatments and methods can people use to manage their pain?
Medication often seems to be the first line of treatment. That works for some people, but these treatments can come with unpleasant side effects like drowsiness or nausea. Research shows that acceptance of living with pain can make a big difference. People are often looking for complete pain relief, but by seeing that pain is a part of daily life – not something that can be erased – they often become more resilient.
Using a cognitive behavioural therapy (CBT) approach to improve your mood and change your responses to pain can help to alleviate some of the effects.
Mindfulness can be used for pain management too. In a study I conducted, over 20 participants with a spinal cord injury listened to two ten-minute meditations six days a week over a two-month period. The meditations didn’t focus primarily on pain, but on enhancing awareness of the present moment. The majority of participants felt that the pain was still intense afterwards, but that the effects were less unpleasant. They also felt better able to manage their pain in the long term.
There’s no one-size-fits-all solution though and you just have to try different approaches to see what works for you. One way to discover what works for you is to record the factors that reduce and exacerbate your pain. Over time, you can review what you’ve recorded and start to make changes to accommodate your pain.
How can people manage their expectations about living with pain in the long term?
It’s important to recognise that there are going to be good and bad days. Pain is likely to be a part of daily life too. Going through that trial and error process to identify what helps manage your pain is really useful. It’s important to go through this process with your primary consultant so they can better understand how pain affects you. And the more you can do to manage your pain, the easier it will be to accept long term.
How can people with a spinal cord injury explain pain to their friends, families and healthcare professionals?
As someone who doesn’t have a spinal cord injury, many people have a tricky time explaining their pain to me. But using physical descriptors, like burning or electric sensations, for example, can provoke empathy and understanding in the listener. People have told me that their pain feels like lightning bolts, intense pins and needles, and like constant toothache. I can relate those descriptions to my own experiences and imagine what their pain might feel like. We don’t know what effect these descriptors might be having on the intensity of pain, but it certainly does help to use these lucid descriptions to give people a real insight into what their pain feels like.
An important process in managing pain is helping others, such as your friends, family and GP, to understand what you’re experiencing so that they can better support you. This, in turn, can help improve your ability to cope with pain.
Pain diary: record, monitor and manage your pain
Rosie explains how she uses a ‘pain diary’ to monitor her experience of pain, ultimately allowing her to better manage it and live the life she wants.
My pain diary is a record of everything to do with my experience of pain – when it happens, how severe it is, how long it lasts, and the trigger points that cause it to flare up.
Over time, keeping the diary has given me the information I need to help manage the pain I experience as a result of my spinal cord injury. I never felt inspired or even motivated to keep a diary at first – living with difficult pain used up so much energy and often monopolised my whole day, so the thought of keeping a written record about something I despised felt like a very onerous task. But when I started receiving acceptance commitment therapy (ACT), I began to see that keeping a pain diary might be worthwhile. ACT helped me move towards accepting pain as a part of my life.
Starting my diary
To begin with, I recorded the level of my pain using a score of zero to ten (ten being the worst pain imaginable, and zero being pain free) approximately three times a day – while documenting any activities I had been doing including meals, rest periods etc. At this stage, I wanted to identify potential trigger points for my pain. I had started to regularly cancel arrangements with my friends because I was in too much discomfort. I knew I was becoming unreliable and letting them down, and I felt that the pain was changing me into a different person. So I started to arrange to meet my friends for lunch rather than supper, and I planned a rest morning on the days I was going out at lunchtime.
The diary also started to identify that physical activities, like rowing, pushing into town and swimming, did exacerbate the pain, but sometime only on a temporary basis – like 30 to 60 minutes. In most cases, I thought that discomfort was worth it because I get so much enjoyment out of sport and staying active. But it transpired that my pain would often get worse as the day progressed anyway, and I also discovered that even non-physical activities, like reading and driving a car, also resulted in increased pain and were less distracting than physical exercise.
I think the whole process of becoming more flexible and adaptive was a revelation from my pain diary. I didn’t expect that it would help me move forward in this way. The diary helped me to break the day up into chunks and to move them around to accommodate all the things I wanted to do. For example, if I was rowing in the morning, I knew I would need to go home to rest in the afternoon.
Changing my routine to accommodate my pain
Before the diary, I might be going from rowing straight to shopping and cooking supper for my friends. By the end of the evening, I couldn’t manage the pain and was desperate to lie down and stretch my limbs out. The diary has really helped me to include that very necessary recovery time, and I can now stay active for whole days or even weekends – as long as I know I can access some recovery time along the way.
As a volunteer wheelchair skills trainer, I am often away for up to eight hours visiting spinal centres around the country. By the time I get home, my pain is tough and I need to stretch out straight away. But I can get through this because I’ll make sure not to have any commitments that evening to allow me to rest.
I took on the same mindset when I took on The Snowdon Push to raise funds for Back Up. Being pushed and pushing myself up a bumpy, steep mountain in an adapted wheelchair was a full-on day.
I was able to manage my pain by taking short breaks along the climb, getting out of the chair and stretching out, and having a massage to help circulation. At the party afterwards, I kept myself busy by chatting with everyone there and enjoying a glass of wine with my friends. All these factors helped me to manage my pain that weekend. Just finding out what your ‘help factors’ are can make a real difference to your life.
The long-term impact of the diary
The diary has certainly played an important role in my pain management because it showed me that I needed to adapt my lifestyle – something which what was quite obvious, but something I also wanted to deny. I had refused to listen when healthcare professionals told me that I needed to learn to pace myself. I had always led an active life, thriving on keeping busy and playing lots of sports. The thought of slowing down just felt incompatible with the type of life I wanted to live.
Keeping the diary as part of a programme of ACT helped me move towards a realistic acceptance of pain. I started to build a new lifestyle which would accommodate the pain, as well as allow me to continue to do the things that were important to me. In fact, documenting my experience of pain has allowed me to shape a routine that is not so very different than the life I lived before my spinal cord injury.
My top tips for keeping a pain diary
- Any old note pad will do. Don’t have a fixed idea on how you want it to look.
- There will be much more to record on some days than others.
- Try to describe the emotional impact of the pain, not just the level of sensory intensity.
- It’s helpful to reflect on the diary every few days to look for patterns, connections etc.
Dr Jasmine Hearn has prepared a short mindfulness meditation, which is one of a number of techniques people use to manage their pain. If you would like to explore mindfulness further, please refer to our signposting information below.
Other organisations that can help
We have information and contact details for other organisations below that may be able to help you manage your pain.
- Pain management – A useful pain management document from SIA. You need to register for a free membership to access it.
- Action on Pain – A UK charity which provides support and advice for people affected by chronic pain. It operates a help line five days a week
- British Pain Society – A professional organisation with specific information about living with pain and the organisations which may be able to help you
- Pain Concern – A UK charity working to support people with pain and those who care for them who also operate a pain helpline manned 3 days per week
- Pain Support – The Pain Support website aims to help people in pain move forward in their lives with better pain self-management
- Breathworks – offers an eight week mindfulness and compassion course in Manchester and London to give you the skills to live well with chronic pain
- Mindfulness Bell – Free app to download for android and iPhone – mindfulness meditations and courses
- Pain Management Network – Australian website which gives you a better understanding of spinal cord injury pain and pain management