And how Explain Pain has harmed people living with chronic secondary pain.
We’ve all heard about ‘pacing’ as a strategy to manage chronic pain. I have a problem with that idea, or at least part of it. Because, once again, pacing is a very different proposition if you have chronic primary pain, as opposed to chronic secondary pain.
What is pacing?
“Pacing” involves finding a balance between activity and rest in order to avoid either overexerting yourself, which can cause a pain flare, or under exerting yourself, which can lead to deconditioning which can also increase pain.
How to pace yourself
How do you pace yourself? It’s a pretty simple concept. But to break it down, here’s some ideas on how to pace yourself:
Break Tasks into Manageable Portions: Instead of trying to complete a task all at once, people with chronic pain break it down into smaller, more manageable steps. For example, when cleaning the house, you might do one room (or half a room) per day rather than cleaning the whole house and then recovering for three days.
Set Realistic Goals: This means being mindful of your limitations and not pushing yourself beyond those limitations, no matter how much you might want to. For example, you might want to go to dinner and a movie, but you know if you try to do both, you’ll fall asleep in the movie. So, you compromise and go to a matinee instead and order in afterwards.
Alternate Activity and Rest: Pacing involves building in rest periods into all your activities. For example, if you need to do the washing, you might sort one load and put it in the washer, then rest. Then hang it out, and rest. You get the idea.
Listen to Your Body: It’s important to pay attention to how your body feels. If you start to feel increased pain or fatigue, it’s a sign that you may be pushing yourself too hard, and so, you guessed it, you rest.
Avoid Boom-and-Bust Patterns: When you live with variable chronic pain, some days are better than others. And when you have a good day, the tendency is to do ALL the things. To play catchup, to have some fun, to do way more than usual. That’s your boom, and often the next three days is a bust as you recover from the extra activity. Pacing aims to smooth out this cycle and avoid the bust.
Pacing is really very much common sense. I think most people who live with chronic pain of any severity are forced to pace themselves. They have to learn their limits, how much they can do, and what the consequences of these activities are. And then make choices on how they live their life, based on that information.
In my experience, pacing also involves drawing some pretty strict priorities. I am always assessing how important an activity is to me, whether it’s essential, would be nice, or can give it a miss. Often, with severe, daily pain, even essential things fall by the wayside.
Also, it has to be said that sometimes it’s absolutely worth the bust to experience the boom. This is a choice that we get to make, and it’s NOT wrong. A few years ago I was still capable of doing a road trip to the coast. It was a two-and-a-half-hour drive, and I’d make stops every half hour or so and stretch, so it took about three and a half hours to get there.
I’d leave early morning, and when I arrived, I’d be wrecked. The price was spending the rest of the day lying down, recovering. The first day was always wasted. But then, the following day, I’d be OK. Same price when driving home, so I lose a day either side, each way, because I drove. That was the cost. That was the ONLY way I could spend time at the coast. And it was totally worth it. And I’ll take that bust to have the boom by the beach, any day.
Now I can no longer drive that far. It’s not safe. I get too tired, and I don’t recover quickly enough, it’s not possible for me to go to the coast. At least, not under my own power.
And here’s the rub, despite being most excellent at pacing, I have continued to deteriorate, and lose function.
My previous physiotherapist* could not understand this. It was anathema. He’d been taught that pacing improves function, so therefore, if I was getting worse, I must be doing something wrong.
And THIS is where the problem comes in with some health care professionals, who have been taught that pacing is not so much a way to manage pain and fatigue, but to improve or even cure it. The expectation is now that when you learn to pace yourself, over time, you will increase in strength and stamina and your pain will decrease.
This works great when you have chronic primary pain. Far less so when you have severe, chronic secondary pain.
Why? Because chronic primary pain is psychosocial pain. There is no biological / psychological / physical / structural problem causing the pain or limiting movement. The barriers are psychological; the barriers are thoughts and beliefs.
But me? I have physical limitations, not psychological ones. It’s like telling someone with a broken leg to walk it off.
But, again, people have been taught, wrongly, that all chronic pain is psychosocial. That there is no tissue damage, no nociception, in chronic pain. And so they dismiss what is happening in the body, focus on the brain and ‘danger signals’, and have very unrealistic expectations.
This is what happened when I was seeing my physiotherapist about the muscle loss and weakness in my legs. He told me I needed to pace myself and I would slowly get stronger.
I told him I had been pacing myself, but I’d hit a wall. He replied we’d start from scratch, and with his guidance, I would get stronger.
Great! He was confident and knowledgeable, and this was exactly what I wanted to hear. Played perfectly into all my biases that exercise is the answer to every problem, and I threw myself into his program with gusto…and by that I mean I followed it to the letter. I did exactly what he said, no more, no less.
But first, he wanted to ‘Explain Pain’ to me. Understanding how pain worked, he said, was critical to my being able to recover from pain. If I understood pain the way he did, I would improve and recover from pain.
I had already read Explain Pain at this point and was well versed in the neurobiology of pain. I didn’t argue with him, I listened politely, but I didn’t really engage. I just wanted to get to the exercises.
First, we found my baseline, being the amount of leg exercise I could do, without causing a pain and weakness flare up. And then we increased that exercise by 10% every week.
I did this and wound up in a three-day flare of severe leg weakness and fatigue by week three. There was pain as well, it felt like an electrical storm going on in my quads and calves…very unpleasant.
It was NOT normal muscle pain from working out. I have been a gym junkie all my adult life and I’m a qualified personal trainer. I know what delayed onset muscle soreness (DOMS) is and what it feels like. This was NOT that. This is muscle weakness. Loss of strength. My legs feel like jelly, and they feel like they are made of lead, all at once. They are too heavy to lift. And the pain is neuropathic, both shooting through my muscles and causing thousands of tiny needle sticks, ever increasing in intensity.
Too much exercise caused an exacerbation of my disease. It was all very unpleasant…and disabling. I learned it’s very easy for me to overdo it. And if I overdo it, I make my life so much harder.
Neuropathic pain is nothing like the pain of inflammatory arthritis. My RA pain always responds well to exercise, so this was new to me, and a hard pill to swallow.
The problem was clearly that I increased too fast, and by too much. So. I went back to baseline and increased by 5% every two weeks. Shockingly, it ended with the same result, it just took four times as long to get there. At the same point, every time, I would have a massive flare, followed by three days of recovery. It did not matter how slow I went. It did not matter how careful I was. It was a physical limit, around the same weight and reps every time.
A brick wall. I hit my limit.
My physio and I talked about it. At first, he was very supportive, very encouraging. He told me I could do this, I could get past this limit. Then he tried to find the problem with what I was doing. He was sure I must not have been following the program. Did I do too much? Did I increase too fast? He empathised that for someone like me, a lifelong exerciser, it’s hard to NOT overdo it, to keep within the limits. Did I exercise every day, instead of every second day? Did I push too hard?
Or did I not do enough? Had the previous pain flares made me fearful? Was I afraid of pain, afraid of causing a flare?
At first, he was curious. Then confused. Then frustrated because I was not responding the way he’d been taught I would.
Which made me feel like he thought it was my fault (he did). In his view, he knew the therapy was correct, it was proven. He knew he was explaining it correctly, so the only thing left was…me. I must be doing it wrong, somehow. That was the only answer he could come to.
But that’s not correct.
He did not understand how pacing works in chronic secondar pain and he did not have realistic expectations.
No amount of pacing is going to overcome a progressive, degenerative disease. That’s so bloody obvious. Again, common sense.
I was honest and told him what I thought – I felt this was just my physical limit and I would need to accept this. At least for now, while I waited for further medical treatment. My neurologist is working on IVIG treatments, and the hope is this will reverse some of the nerve damage.
But he saw this as my limiting beliefs. The tissues don’t matter, pain is in the brain.
It did not make sense to him that I could not improve past this point and he could not accept that I was doing everything as prescribed, but was not able to increase my capacity. He became more and more frustrated with me.
Ultimately, he told me that I had clearly decided that I couldn’t do more, and that I was full of limiting beliefs. He reiterated that I needed to understand how pain works, and there was no way he could help me with until I understood pain the way he did. If I refused to learn, if I refused to take this on board, I could not get better.
Basically, he said it was my fault the pacing wasn’t working because I refused to engage with ‘Explain Pain’.
What he failed to appreciate, what he refused to learn, what he would not comprehend was that I have this other variable that he wasn’t taught about. I have chronic secondary pain. I have a disease process going on in my body. There is inflammation and nerve damage and injury. There is ongoing tissue damage and nociception. And I have a systemic disease that causes fatigue on my best day.
He could not understand that I have a disease, and the disease influences my pain and function.
That’s not me being a drama llama, it’s a medical fact. My nerves are not normal, they have suffered damage.
Yes, damage. Sometimes pain does equal damage, sometimes hurt does equal harm.
He could not reconcile this information within his Explain Pain framework. He was taught that all chronic pain is due to an over sensitised nervous system and pain does not reside in the body part.
He had learned it so well, so deeply, that he was unable to add the teachings of Explain Pain to his previous training. It was more like he threw all of his previous knowledge away and replaced it with ‘Explain Pain’. He was so convinced that simply learning about how pain works is the key to making pain go away, he was stuck in an ‘Either / Or’ loop.
Which is wrong, and why I have such a very big problem with Explain Pain and why I have been such a vocal critic of this theory of pain.
In his view, what he had been taught, was that once I embraced pain science education and understood how pain works, I would no longer be afraid and the pacing would work for me.
As with all pseudoscience, there’s some pretty large leaps there.
When I did not improve, when my pain did not improve as expected, he blamed the patient.
This is my experience, as a person living with severe, daily, secondary chronic pain. And I’ve found its not an uncommon experience when people who have severe, secondary pain come into contact with ‘true believers’ in Explain Pain.
The irony of the whole thing is that I never went to my physio for pain treatment. I was looking for help regaining strength, or trying to slow the loss of muscle mass and strength I was experiencing. My physio focused on the pain.
He had been taught that all chronic pain is psychosocial, an output of the brain, the result of on over sensitised nervous system the result of maladaptive thoughts and beliefs….so he decided, since I have pain, I must have maladaptive thoughts and beliefs. That was the only way he could make sense of what was happening in front of him. Because he’d been taught to ignore what was happening in the tissues.
To me, that just sounded a lot like victim blaming. And a little bit gaslighty, to boot.
He had lost all common sense, so committed was he to the psychosocial model of chronic pain that he’d forgotten the ‘bio’ part. He could not incorporate new information, he had to squeeze me, a very square peg into his round hole. He was an Explain Pain evangelist, and it destroyed any chance of a therapeutic alliance.
Because he was wrong. Way wrong.
Pacing works very well on people who have no tissue damage, no structural damage, no disease, no pathology, no biological pain. A person with chronic primary pain has psychosocial pain. There is nothing physical stopping them from exercising. Usually, people in this situation have become deconditioned due avoiding exercise for fear of causing damage or more pain. They made a choice to stop exercising, to protect themselves, often because they received poor health advice. They need the confidence and the courage to start exercising. As they slowly build the intensity and/or length of their workouts leads, they get stronger, and fitter and are able to do more. And their pain usually decreases as well. For them, there is no physical barrier to becoming stronger.
That’s not me.
I do not have limiting beliefs. I have limiting pathology, disease, damage, that is preventing me from doing more, from becoming stronger.
If all it took was a graded exercise program to overcome disease, then we wouldn’t have MS, or Parkinson’s or motor neurone disease, or even spinal cord injury and paralysis. Or CIDP.
There are so many holes in the Explain Pain view of the world, but no one wants to stop and think about that. Because people want to believe it so badly.
But this does a great deal of harm to people like me. We have insanely unrealistic expectations put upon us. We are told essentially that our pain is our own fault. That we didn’t work hard enough, or in the case of Explain Pain, we didn’t understand or BELEIVE hard enough. Which sounds a little too close to any number of alternative treatments that exist purely to fleece people of their money. Manifest health, anyone?
In Australia at least, Explain Pain is the pseudo textbook that physios use to treat chronic pain. But it was only ever intended to explain and treat chronic primary pain. But it was marketed hard as a treatment for all chronic pain. And that is why I have been so vocal and very critical about it.
Because finding a physio who did not want to treat only my brain and who also wanted to help me with my actual nerve damage and loss of muscle mass, took a long time. It took five separate physiotherapists and three different practices. And many hundreds of dollars in consult fees.
Expensive. Slow. And a very unhealthy experience.
I now have a far more well-educated, well-rounded physiotherapist, by the way. He is still working with me on pacing, and maintaining my strength and muscle mass, but it doesn’t matter to him whether I believe in Explain Pain or not. He helps, he coaches, but he never blames me when I can’t overcome my pathological disease and I can’t cure myself with treatments that were only ever meant to cure chronic primary pain.
NOTE* The physiotherapist I’m describing is a combination of five physiotherapists I consulted, in the quest to slow the muscle and strength loss I was experiencing. When you consult a doctor with any musculoskeletal problem, they will first send you to physio. Finding one who will listen, properly assess you and understand the difference between chronic primary pain and chronic secondary pain is a very, very hard task in Australia, in 2023.