Spinal Cord Injury Pain: Thoughts and Feelings

Well when this injury first happened I was, I was flawed, I was stunned.

I… had no idea where my life was going to go.

Like where it could head and what would happen to me.

I just felt extremely lost and with… you know guidance from the spinal unit and- and advice from other people I’ve sort of found my way through and then look at my own challenges.

And now I realise that you know, anything is possible, you just have to be able to think about it a different way or do it a different way.

It’s just, nothing is really stopping you but yourself.

Spinal chord injury is a very stressful experience in itself.

Most people don’t expect that to come with pain, and they certainly don’t expect it to be pain that won’t settle down and go away as they recover.

So it- having a pain problem on top of your spinal chord injury can really be a very stressful experience.

So the stress that goes with having a spinal chord injury can open the gates to mean that the volume of pain is greater.

Of course when the pain is worse it tends to make people more stressed and worried and so it becomes a vicious cycle.

People worry about what the meaning of the pain is.

And often worry that it means that their spinal chord injury is getting worse for example.

And that can make them very cautious about doing things and cut back on activities that exacerbates the pain.

And of course if you took away enjoyable activities from anybody’s life, it’s enough to make anybody miserable so that can be a major problem for people.

I have a very social life outside.

A lot of friends and family members which I do go out and see and meet on a regular basis and go out to restaurants and you know, do all that- all that stuff.

And it’s just- that's what- to mask the pain or to hide the pain away, that's what I do.

You know, just go out and socialise basically.

Yeah getting out and doing enjoyable activities and keeping yourself physically fit is really important to your emotional wellbeing.

We know for example, that physical exercise is about as good as an antidepressant for people with moderate depression.

So that’s always going to be helpful.

But also just going and doing activities with people that you enjoy spending time with.

Doing things that give you pleasure or make you feel like you’ve had some kind of accomplishment really helps to boost your mood.

And obviously when people are in pain they often give up activities that have previously been important to them.

And we would really like to encourage them to try and go back to some of those things.

Yeah well I- I- I look at it- that when you are doing something you have a distraction.

So that really really helps to- rather than sit there and feel sorry for yourself and say how much this hurts Every- I have bad days some days and I do notice when I sit there and I think “Geez this really hurts”, it seems to hurt.

But when I try and just say to myself like "It hurts, just gotta go and do what you gotta do.

” and that does seem to help and distract the mind.

And it helps not to think about it as much.

Well we know that the natural history of chronic pain conditions is that the amount of pain that people are in fluctuates.

So they have good days and bad days.

And those bad days we refer to as "pain flare ups".

And they can be really difficult days to get through.

Often they can trigger off thoughts about how able you are going to be to cope in the future.

Whether perhaps the pain problem is going to get worse over time and you’re not going to be able to cope.

And sometimes even people can become very hopeless about their future as a result.

I found it incredibly important early on to change my thinking about my pain, because I found that I was stuck in this negative thinking pattern of how bad the situation was.

And then I realised that there’s always something that’s great in your life.

And that if you focus on- if you choose to focus on what’s good about your life, then what's bad about your life or- don’t label it that, but what’s not so good about your life tends to fade a little bit.

And it gives you the strength to look at- at options of doing other things and- and looking at other opportunities and not being stuck in this head- mindset I guess, of just severe pain and living that pain.

You essentially push it aside and say, yes you are there but I’m going to get on with my life.

And I’m going to look at what’s right about my life not what’s wrong.

Well you don’t count the ‘dis’ in ability because that’s something that a lot of people have.

You can focus on your ability because it’s what you can do that matters.

Not what you can’t do.

You don’t focus on the ‘can’t’, you focus on the ‘can’.

Unhelpful thoughts can sometimes get in the way of people coping really effectively with their pain.

And there are a couple of things that you can do about that.

Sometimes you might want to just let that thought pass.

Accept that it’s there but just not engage with it and not let it distress you Or alternatively you might want to look at that thought.

And decide whether it’s a really a useful thought.

Whether it’s helpful.

Whether it’s even true.

And see if there’s another more helpful way of thinking about the situation.

So for example, during a flare up of your pain you might find yourself wondering whether you’re gonna be able to cope with this in the long term.

And that can obviously be distressing.

So looking at what the reality of the situation is.

Maybe you’ve gotten through flare ups in the past and you’ve come out the other side.

That can help you feel more comfortable and confident about dealing with the future.

So a Flare Up Plan involves using all of the pain management strategies to try and minimise the length of time the increase in pain lasts for.

And to minimise the negative consequences of it.

The first step, really is about getting your thoughts as helpful as you possibly can.

And then using the other strategies to help you get through.

Like prioritising your activities, pacing your activities.

Using things like relaxation and meditation and using your medication effectively.

I know I’ve always been a determined person.

Like always trying to face fears and things like that.

I just it’s just- I try not to- I try not to think about it and I take the steps of massage, stretching and the mind over matter I think really seems to help.

Well living with spinal chord injury and with pain on top of that can be stressful.

Can cause lots of muscle tension.

And you might find using things like relaxation or meditation helpful.

Helps to reduce the levels of stress and keep your muscles as relaxed as possible.

And that obviously turns down the volume of the pain.

So meditation is obviously an important part of that.

That- I just- try to focus on looking at all the positives.

And the meditation really is about taking the focus off the pain being so bad.

And trying to just put it aside and look at all the good things.

But yeah, it’s an incredibly valuable tool.

And it has helped me to see things a lot more clearly.

And to also get through some extremely bad bouts of pain.

Well extremely bad flare ups.

So there are lots of things that you can do to help yourself.

People very often give up activities that they’ve previously enjoyed when they have pain.

But that doesn’t mean you can’t get back to doing them again.

One of the keys really is about starting small with an activity that’s important to you and gradually building up over time.

So for example if you are trying to get used to going out and doing activities in your chair, you might need to plan to take breaks regularly.

And not only to manage your pain but also to manage things like fatigue or to look after your skin.

Make sure you don’t cause any pressure areas.

Another important strategy is called ‘Pacing’ of activities.

And that’s about having some time limits about what you do.

Even in the long term, once you’ve returned to doing a particular activity, you might find that you still need to take regular breaks so that it doesn’t exacerbate your pain.

So if you’re thinking about returning to study or returning to work for example, you may need to organise to have some time out of your chair part way through the day.

Just to give you a bit of a break and let the pain reset itself a bit and helps you cope and keep going for longer.

You can do almost anything if you want to.

You just have to be willing to look at doing it a different way.

And then it’s possible.

And… you know, use all the strategies that you can learn on managing pain to stop pain being the inhibitor.

So desensitisation is perhaps a less well known strategy for managing pain.

But it can be particularly effective when you have a neuropathic pain problem, which commonly people do when they have a spinal chord injury.

And that works on the premise that pain is attention grabbing.

And naturally our mind wanders to the pain when we’re experiencing it.

That can obviously really interfere with our day to day activities.

Now counter intuitively perhaps, desensitisation involves practicing paying attention to your pain in order to make it a bit more like background white noise in the long term.

And by way of analogy, for example if you walk into a room with a beautiful view, it grabs your attention initially.

But after a period of time perhaps you don’t notice it so much It’s just like wallpaper.

And the same thing with regular practice can happen when you use desensitisation.

It’s one of the strategies that you need to try out for yourself.

Perhaps use it at times when other strategies that you might also favour haven’t been working so well.

And it’s really about trial and error and finding out what works well for you.

I have a godson that I used to try and get to sit on my lap but my knees would always hurt.

And at first I would go "Ok, you’ve been on for twenty seconds, now you’ve gotta get off.

" I found that when I just sorta went "Nup, I’m gonna bite the bullet and stuff it, you’re staying on me lap.

" I think that’s helped to desensitise the actual pain in my knees.

Because I stopped, I suppose babying it and going "I can’t do this.

I can’t do that.

Because me knees are gonna hurt.

I can’t go outside because it’s a bit windy.

Because the winds gonna blow the hairs on me legs which is gonna hurt.

" I just found myself sitting out the front for a little period of time in the wind and then coming inside.

I had me godson sitting on my lap for a little period of time and then I just slowly started upping the periods of time that I was exposing my legs and the pain to these things and found that that helped.

And now that’s not something I worry about.

Doesn’t matter if it’s windy, if it’s rainy.

I go out still.

One of the things that I’ve learnt and continue to learn is that I suppose I’m a stronger person than I ever thought I could be.

And I just try and keep- to have that attitude and think everybody else should have that attitude.

Just say- it gives you something to to aim towards.

To be better.

If you don’t have goals you find yourself doing nothing.

Everybody needs goals in life.

Doesn’t matter if you’re disabled or able bodied.

If you don’t have goals in your life, set yourself standards, you end up just sitting still in life and going nowhere.

When this injury happened I could not have foreseen life like this.

I was just so dumbfounded and lost.

And now I realise that it’s all, you know, it’s all within you and it’s all possible to change your life.

And to modify- modify your approach to life so that the pain doesn’t- doesn’t sort of overwhelm your life.

And that you can look at challenges and take them on and- and it’s not gonna make anything worse.

In fact it’s going to make your life a hell of a lot better.

So it’s great to see how Sue and Vito and Brian have got their lives back on track again.

And they’re living a meaningful life despite having continuing pain.

And I think we can see from their examples that they’ve each used the strategies in different ways.

Maybe drawing on the same ideas but making them their own and using them in an individual way.

And you can do that too, with the help of the members of your healthcare team.

To create your own plan for managing your pain click on the Health Plan button below the video and download the PDF.

Print it out.

After each video, fill out the relevant sections.

You only have to fill it out once.

Take your completed health plan along to your GP or your health professional.

This is a great starting point to managing your pain.