What is Chronic Pain, Really? (#2)
Exploring an often invisible condition 🧠
Missed Part 1? Read it here. Or keep scrolling for Part 2.
Hey there!
Before we get into this blog I just want to say an absolutely enormous thank you to everyone who read the first article a fortnight ago. I really cannot express how mind-blown and heartwarmed I have been by the support and vulnerability shown. So thank you and I hope you find the rest of the series interesting 💙
Now, let’s dig into part 2 and answer - what is chronic pain?
A weekend “getaway”
One year ago I went on a weekend getaway which changed my relationship with pain.
In a last ditch effort to get a grip on my latest chronic pain struggle in both of my hands, forearms and elbows, I resorted to big expensive magnets. Specifically the MRI machine kind. I wanted to know, once and for all, what was at fault in my body. Why else would I be in pain if not for a faulty body? Or so I thought at the time.
On the Saturday I had three scans done on my right arm. Having your arm outstretched in front of you for 30 minutes is not quite the embodiment of relaxation. But, keen for more, I returned the next day for my left arm.
So you might be wondering - why am I telling you about the time I spent lying in what seemed like a $2 million toilet roll?
Leading up to this, I’d briefly heard about the brain’s role in pain - but at most appointments I was told there was something wrong with my body, and that’s why I was feeling pain. For my hands/arms in particular - it was “lack of grip strength”, “tight muscles” and apparent “tendinopathy”.
Well, as it turned out, the scans revealed there was nothing physically wrong with either of my arms…
An aside, I did get lucky here. As we’ll soon see, many people have damage which doesn’t cause pain - so scans can be misleading.
But first, let’s nerd out for a moment on what was happening to me.
Something doesn’t need to be broken, to hurt (Pain ≠ Damage)
Until the 90’s, the leading explanation for pain was physical damage or injury. Think things like muscle, tendon, nerve or inflammatory issues.
In the decades since, there has been a gradual shift toward pain being looked at through three key components. Biological (i.e. the former model), psychological (what happens upstairs), and social (our environment). This is known as the biopsychosocial model.
With the realisation that pain is often caused by non-biological factors, in 2017 the International Association for the Study of Pain (IASP) formally recognised a new category of pain - nociplastic pain. In total there are now 3 recognised types of pain, each of which can be involved with chronic pain:
Nociceptive: What you experience when you pull a muscle at the gym or give yourself a paper cut.
Neuropathic: Caused by damage to the nerves in your body. Nerves are those small wires which send signals from your brain to let you scroll down this article and feel the sensation of your mouse/touchscreen.
Nociplastic: Simply put, this is pain which is not caused by damage in the body. It also goes by other names including neuroplastic pain, TMS and more.
Back to my weekend getaway - my body wasn’t damaged, and my nerves were fine. Nothing was broken. So I was experiencing nociplastic pain!
But here’s the interesting thing - not only can pain exist without damage - often there is damage without any pain at all.
Just because something’s broken, doesn’t mean it hurts (Damage ≠ Pain)
You might be thinking - if I find I have damage, surely that has to be the cause of my pain?
Well, a 2015 study looking at over 3,000 people’s spines found something wild:
52% of pain-free 30 year olds had disk degeneration, and
50% of pain-free 40 year olds had at least one disk bulge!
This indicates that (also) damage does not mean pain!
In my journey of working out what was going on, I came across a tear in the back of one of my shoulders - probably from teenage Dan lifting too much weight at the gym. Yet, I had no pain or symptom in that part of my body. In fact a whole study was done on this exact type of shoulder damage, and results were similar to the spine study from before - most of the people (note, who were older) had no pain in spite of their shoulder damage!
So while it can be helpful to have scans done - particularly to rule out serious structural causes like fractures, significant nerve impingement or cancer - it’s worth knowing not everything found is necessarily the cause of pain. Even if it’s precisely where symptoms are felt.
Lets look at a common culprit we met earlier (and the source of my pain) - nociplastic pain.
So I’m made out of plastic?!
Don’t worry, you’re not turning into a tupperware container.
The term “plastic” in nociplastic refers to neuroplasticity - your brain’s incredible ability to learn new things and form new habits. In the context of pain, this plasticity can often lead to it becoming chronic. And it’s a big deal…
Nociplastic pain is estimated to affect 25-75% of chronic pain sufferers. Either directly (e.g. my situation where there was no clear damage) or alongside a structural cause. And given roughly 1 in 5 adults globally (not just in Australia!) have chronic pain, nociplastic chronic pain likely accounts for the suffering of approximately 600 million adults. That’s getting close to the population of Europe!
To help illustrate how common this is - fibromyalgia, migraine, chronic fatigue syndrome (CFS) and irritable bowel syndrome (IBS) are just some conditions where nociplastic chronic pain plays a big role. It’s not just joint or tissue pain.
Given its endemic prevalence, this blog will mainly focus on nociplastic pain. From now on when you see the phrase “chronic pain”, it will mean chronic nociplastic pain (i.e. not tissue/nerve damage) unless otherwise called out.
Let’s explore some of the irregular things many of these 600 million regularly encounter, through some more personal examples.
Hypersensitivity: Feeling cooked whenever I’d cook
When I was living with chronic pain, things would just hurt more - and more often. Anything from light touch or exercise would lead to me not feeling well in those parts of my body.
Whenever my grandfather and I would shake hands, something we’ve done since I remember having hands, I would feel a bruising/fatigue sensation in my hand and forearm.
Whenever I would cook dinner, my wrists and elbows would (figuratively 👨🍳) get cooked.
Whenever I was typing away on my computer for more than an hour, (surprise!) my fingers would feel numb, bruised, tingly or like they were being lightly shocked.
In short, my brain’s pain processing abilities had become hypersensitive! We’ll dig into the details of this fascinating concept in the next article.
Widespread symptoms: The ol’ block of Swiss cheese
I had symptoms in a variety of places. Sometimes in the span of a day I would go from having pain in my upper limbs to pain in my achilles. Sometimes it would leave my legs alone and bounce between both of my arms.
It’s not uncommon for pain to move around to different parts of the body when someone is experiencing nociplastic pain. For conditions like fibromyalgia, part of the diagnosis criteria is having pain in multiple parts of the body.
While this sounds strange and should have been cause for me to realise earlier this wasn’t a normal tissue (or nerve) issue, when you have chronic pain the irregular becomes the regular.
Emotions: Pain as a language
Imagine for a moment you’re about to give a speech to a large room of people. Or you’re feeling a bit annoyed at your housemate who hasn’t cleaned their dishes in 3 days. In the first case you might feel a pain in your gut or like you want to break the 100m sprint world record to get to the bathroom. In the second it might be tension in your chest or neck. In these situations, physical discomfort can be a sign that you (and therefore your mind) are not ok with what’s happening.
Similar to this, during my chronic pain journey I would often notice flare-ups of worse symptoms around stressful moments. For example if I had a conflict with friends or if I was running late to something I cared about.
Even now, if I’m feeling overwhelmed or anxious (like when I released blog post #1 recently), I notice my body wanting to communicate with familiar sensations. However, because I now understand this connection I am able to respond instead of react.
As emotions and psychological distress are inseparable from pain, they will feature often in the next two articles.
Let’s look at a person you might know who went through this journey
No not me. Someone famous.
Some of you may know the TV shows ‘Seinfeld’ or ‘Curb Your Enthusiasm’. It turns out the creator of these shows, Larry David, suffered from chronic back pain and was able to recover by recognising the role his brain was playing.
Skip to 1:28 in the video clip below 📼
That’s it for now!
Next time, we’ll be opening up the hood of our car - I mean brain (drops spanner) - to understand the causes of chronic pain. We’ll then be in a great position to explore how to recover!
See you then ⛵️
Hey, I’m Dan. I had chronic pain for several years, and now I’m writing to spread awareness about this condition as well as what I did to recover. I’m not a medical practitioner so please consult with one as part of your journey.
Got any questions or feedback? I’d love to hear from you!
Another fabulous piece Dan! :)
Great blog. BUT...with the greatest respect, nociplastic pain, or chronic primary pain, is the minority state. The research is sparse, but at best, about a third of people have nociplastic pain. Most research puts it at much lower, at around one sixth of people. Thats what Lorimer Moseley states - 1 in 6.
MOST chronic pain is due to pathology - nociceptive or neuropathic chronic pain. Or chronic secondary pain. That's what hte evidence shows.
https://arthriticchick.substack.com/p/correcting-the-record-the-prevalence
People with a vested interest (for their own benefit) spread that myth that nociplastic / chronic primary pain is the cause of most chronic pain. This idea is wrong and causes a great deal of harm to people who live with pathological (chronic secondary) pain.
Its very important to make the distinction between the different types of chronic pain., because the different types of chronic pain have very different treatments. Currently, all chronic pain is being assumed to be primary/nociplastic pain, and we are all given treatments approrpiate only for nociplastic pain. Which is fine for those of you who have nociplastic pain. However, it leaves people who live with chronic secondary pain - nociceptive and/or neuropathic chronic pain - with untreated or under treated pain. And this causes a great deal of harm.
While I appreciate you are educating and adovcating around chronic primary pain, I ask that you please consider these points, and do not refer to nociplastic / chronic primary pain as 'chronic pain'. So as not to contribute to great confusion, and the great harms to those who live with chronic seconary pain.