Introduction to Spinal Cord Injury and Chronic Pain

Pain is actually a very common problem after spinal chord injury with about sixty or seventy percent of people experiencing pain that will last for more than six months.

Which is what we term as ‘Chronic Pain’.

And in about a third of people the pain can be quite severe.

So pain can have a huge influence on a person's life.

It can interfere with the ability to be independent in every day living and perform daily tasks.

It can interfere with ability to return to work, with social activities and relationships.

It can really affect a person's life in many different ways.

It can impact on the quality of sleep.

In terms of mood, increasing anxiety and depression.

So the website has a lot of great resources and patient stories from people who are suffering from chronic pain.

About how they manage their pain in every day situations, using a variety of strategies that can include medications but often includes other strategies to help reduce and manage their pain.

My spinal injury was T-12.

So that’s from the pelvis- the pelvis down.

I was quite stunned at how debilitating the pain was and how all consuming it was.

It affected every aspect of my life.

Sleep included.

It invades your sleep, it invades you know, everything that you do.

And yeah, that caught me unawares at the start, as I said before I had no understanding that there could be pain where you had no sensation.

And the pain has been intermittently so severe that it has just stopped me in my tracks.

As in I can’t function.

Hi, my name’s Brian.

I suffered a spinal injury in 2005.

I’m an L-1 T-12 incomplete paraplegic.

When it first happened I suffered bad hypersensation of the legs.

Which caused lots of tingling.

Knees hurt when I first started to go outside in the wind or if they were touched.

Any rubbing of the knees, like that, caused bad pain.

My name’s Vito.

I’m a quadriplegic.

I had an accident in 1987 at the beach, dived in the surf and I broke my neck.

The level is a C-5/6 incomplete quadriplegia.

Pain has been a major part of the disability I have because it restricts me from doing a lot of things.

Like it resists me from getting in and out of cars sometimes because depending on the way I twist my hips I just get this almighty ache down the side of my leg.

Which doesn’t help me at all.

Which causes a spasm.

Spasms are caused by, I’m unable to feel where the pain is so it automatically sends a shock to the area and I start shaking.

It stops me in my tracks after time, I've just got to… if I want to go out and do something, sometimes I’m so much in pain in my shoulders and neck that I need to just lie down and just alleviate the pain.

Stops me from… yeah… doing daily activities.

So chronic pain is common after spinal chord injury.

And can be related to a combination of damage to the spinal chord or the nerves at the level of damage or trauma.

Secondary changes to the nervous system that follow as a consequence of that.

Weight-bearing through the upper limbs from every day activities and overuse or changes with aging.

There are a number of pain types that occur after a spinal chord injury.

Pain that's experienced at or below the level of spinal chord injury.

In an area where there is reduced or absent sensation.

Or alternatively, pain can be experienced above the level of the injury where the sensation is normal and well preserved.

A very common sort of pain after spinal chord injury arises above the level of the injury and is what we call 'Musculoskeletal' pain.

And it's the type of pain that any of us can experience.

Due to muscle strains, joint stresses or- or inflammation.

It occurs because of people during every day activities wheeling- propelling their wheelchairs or transferring… creating wear and tear in joints and strain on muscles.

It's often felt as a dull, can be a sharp, aching pain above the level, aggravated by movement or sometimes certain postures and relieved by rest.

And common sorts of those pains, you know, what people experience pain, shoulder pain.

Chronic shoulder pain or wrist pain.

Pain in the neck or back, around the level of where their injury occurred.

Another type of pain that people can experience after spinal chord injury is called 'Visceral' pain.

It's a type of pain that's often felt in the abdomen and relates to dysfunction or inflammation of internal organs.

Most commonly problems with constipation or inflammation related to urinary tract infections, bladder or kidney stones.

It's generally in an area of reduced or absent sensation and so people feel it as a dull, aching, vague pain.

It may be intermittent, colicky or cramping in nature.

Nerve pain can also occur above the level of the injury.

Most commonly in about fifty percent of people the nerve in the carpal tunnel as it exits into the hand from the wrist, gets pressure during transfers and wheelchair propulsion.

So the other common type of pain is what we call 'Neuropathic' pain.

And it can occur at or around the level of spinal chord damage or below the level.

And it's often felt as hot, burning, icy cold, freezing, tingling, pins and needles, electric shock like pains that people experience that can often be very severe.

So it's really helpful to classify pain and understand what causes it, the type of characteristics and whether it's made better or worse, for instance by by movement or relieved by rest to understand how best we can treat it.

And the different types of pain are generally treated by different sorts of medications but also different strategies.

So the sort of information your health professional is going to want to know to help classify your pain and be able to manage it better, will include things such as where it's located.

Whether it's located above or below the level of injury, whether that's in the area of altered sensation or where you feel fairly normally.

The types of characteristics of the pain, so the qualities of whether it's a burning, sharp, shooting, electric pain.

Or whether it's a dull, aching pain.

Whether it changes with posture or movement.

Whether it gets better or worse or changes throughout the day.

Well it's really helpful to know what your level of pain is and how it varies from day to day.

Because if it changes in any significant way it may indicate an underlying problem that needs to be acted upon.

The below injury pain that I have is from the pelvis down.

I have intense, crushing pain.

It's particularly bad in certain areas, specifically my feet.

And sort of in my thighs and my right leg.

And that sort of pain is a very crushing, heavy pain.

And it can be very hot as well.

And you can actually- sometimes it can feel like you're being zapped with electricity.

The pain that's above my injuries is more musculoskeletal.

It's um- because of all the damage to my spine and the surgeries that I have had, a lot of the muscles are weak and you know, I get lower back pain.

It's very different to the neuropathic sort of pain of below the injury.

It's more like you've over-strained your muscles really badly.

My above-the-level pain is mainly in my wrist.

I get like nerve, sharp pains here in my wrist.

I think it's from use of the wheelchair.

The wrist going back and forth.

I get, at my level I've got numbing feelings Around me back seems alright but it's at the sides and at the front.

Probably the biggest thing with the below-level pain is from the front of my legs from just above my knee to just below, I've got what they call ‘Hypersensation'.

And that is it feels like a nerve pain.

It feels like it's on top of the skin.

The wind, different things like that or doing that and moving the hairs on my leg stings.

The other pain I get below-level is- I do suffer with a lot of stiffness in the hamstrings, in the quads from being in a chair like this with the muscles shortened.

And also using my crutches on short distances.

When I use me crutches to walk my legs tire very quickly and they end up very stiff.

The upper-level pain is like someone grabbing me by the neck and twisting a nerve.

As there's a twist in the muscle, it tightens the muscle and you can't alleviate from it unless you straighten your neck out- your head out and slowly, slowly the pain will go away, it alleviates itself.

But being in a position for so long it just feels like someones actually pulling on your neck and causing that pain.

In the lower area, what it is is a constricting pain.

it's like someone's been, again, tightening a part of my back, like lower back and just holding onto it really, really firmly.

Sometimes it gets so intense I feel like I've- I'm gonna stop breathing.

Okay, it's that bad sometimes.

So pain will almost always fluctuate in it's intensity during the day or from day to day.

And that's normal.

But if it becomes much stronger or it changes in it's quality or characteristics then that's a signal that it needs to be investigated and you should see your doctor as soon as possible.

So signs that an increase in pain may be more than just a flare-up include when your pain which is normally stable suddenly gets worse or changes it's characteristics, in either where it's located or the qualities of it.

And particularly when there's change in level of strength or sensation, an increase in spasm, changes in your bladder or bowel function, autonomic disreflexia.

All of these can be signs that something abnormal is going on and needs to be investigated.

Um… I… once had… um a pain come in my back which which started off as a slight ache that I didn't usually have in that certain area and then over a few days got worse and I come to realise that no, this wasn't there before.

And it wasn't the norm.

The doctors then put me in for x-rays to find out that my back- the metal in my back had come apart and I was getting movement there and in the spine and the screws and plates were moving.

That was the the pain I had in my back.

I describe it as just something that you know is not right.

Everybody gets pain but when there is something that comes up that is different and starts getting worse, that's something that you need to get checked.

When I get abdominal pain, excruciating abdominal pain like a burning sensation, what it is is usually a bladder infection, a urinary tract infection which causes a lot of stinging, a lot of ache and I spasm with that as well because I can't actually feel it fully and so my body tells me there's something wrong and all of a sudden that flares up and I'll get- my blood pressure goes up.

My body automatically goes to autonomic disreflexia.

Which gives me raging headaches, very very high blood pressures of- I've experienced up to two hundred plus blood pressure as disreflexia sets in.

I've sort of recognise now that when my pain sort of pans out in a certain way there is something actually clinically going on and it is slightly different to a normal flare up.

But learning that was quite difficult because You don't- like you're just inundated with so much pain that you don't realise that a change could mean something is wrong.

And unfortunately I picked up a couple of pressure sores a little bit too late and nearly lost a toe.

You can have a good quality of life.

There's always something else to occupy you and not let the pain take over your body.

Or anything else.

To keep yourself occupied, nine times out of ten will sort of- you forget the pain.

I have a very social life outside.

Got 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 and you know, do all that stuff.

And um… it's just that's what to mask the pain or to hide the pain away that's what I do.

And I just go out and socialise basically.

So what I've discovered is that you can learn to live with the pain.

You have to learn to manage it.

And… um… you can you know, explore options, all sorts of recreation options.

It's really limited by your own imagination really.

But you just have to learn to manage the pain and not let it sort-of, be the boss of you.

I believe I have a good quality of life because I've kept on doing the things that I love and have a passion for.

I've kept on camping.

I've kept on fishing.

And just getting out there and doing these things has exposed me to the outdoors again.

Has helped, I believe become a bit of 'mind over matter' with the pain.

And it helps to ignore the pain It gives you things to look forward to going out and doing which also helps me to cope with the pain.

Review the resources and films on this website for details of helpful strategies as well as to hear directly from people living with pain after spinal chord injury about how they manage their pain.

Download the Spinal Chord Injury Pain Questionnaire.

There are questions that will help describe the type of pain you have, as well as identifying any possible red flags to discuss with your doctor.

Red flags are indications that some more serious may be happening and action is needed.

It also may help when you are communicating with your healthcare team to keep a diary or pain journal.

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.