This is Part 2 of a series looking at the lived experience of pain. The source stories came from the Pain Talks collection on Medium.com. The stories were collected from writings about pain that were searched on the site, and the writers were not given any stimulus for writing. We were interested to understand better what people living with pain wanted to share, and how we might use that to understand how we can improve pain care for all.
This is Part 1 of a series of about the lived experience of pain. The source stories came from the Pain Talks collection on Medium.com. The stories were collected from writings about pain that were searched on the site, and the writers were not given any stimulus for writing. We were interested to understand better what people living with pain wanted to share, and how we might use that to understand how we can improve pain care for all.
The opiate debate rages and observing from the sidelines, it looks like a horrible stalemate where no one is winning. We have enough credible evidence that suggests these drugs are a poor choice for helping most people with chronic pain (1). However their effect is significant enough that their use enables many people to function at an acceptable level, with various side effects. For these people, opiates make life liveable, keeps them functional and coping with their symptoms, without unmanageable side effects. The way we talk about and manage pain, and the way that opiates have been prescribed, seem to have created a moral and legal issue out of the condition of people’s lives and health.
The crux of this to me seems to be “if not opiates, what else?” and can we deliver something else with no side effects and equal or better positive outcomes? Despite the American Chiropractic Association’s attempts — it’s not going to be more appointments and getting your “alignment fixed”. We can help people do a lot better than that. Pain is a public health issue that we need to talk about, and redesign how we care for people that have pain.
When we use opiate medication, we are treating the brain. This mechanism works because pain is an output of the brain, and is a signal to say there is evidence we’re in danger. The growing pain science research base is showing us that we’ve been talking about pain the wrong way for a long time.
Most of us think that pain is caused only by damage and injury. Pain actually exists to tell us about the perceived danger and threat to our body, and to give us a mechanism to stay safe in our environment. This happens in a more complex way than simply related to the state of our tissues, and it’s a decision made by our brain that is influenced by our thoughts, emotions, life situation and the context of the experience.
You can have no pain with a severe injury such as a broken leg, if your survival is at stake, and you need to be able to run away. We have a stronger “medicine chest” in our brain than anything we can prescribe — and your brain can stop you feeling serious damage to your body. On the flip side, you can have severe pain in a “phantom limb” after a limb has been amputated. This is a seemingly bizarre phenomena where the brain retains the memory of the sensations that came from the limb, and continues to generate the pain even after the limb has been removed. Ask anyone with phantom limb pain about their symptoms, and they will tell you about the power of the brain in constructing a pain experience. We will do better in helping resolve long-term pain when solutions comes from our understanding these mechanisms, and how we can get your brain to stop causing pain.
When we take an opiate drug, we’re making the brain care a little bit less about the danger it is perceiving, and thus we feel less pain. Opiates are “suffering medicine” — they make things “feel better” by their action on the brain. This is incredibly useful when we have an acute injury from trauma, or after an operation. It allows us to do “normal” things like move around, sleep and interact with the supportive people around us. When we normalise things in the acute pain phase, we can use opiates as a secret weapon to get back in to normal life. Things go well when we use strong medicine in a controlled and appropriate way such as this! Opiates are absolutely marvellous for reducing suffering and getting people back on their feet, and back to normality. The drug doesn’t help you to get back on your feet and return to normal, they enable YOU to do so without it hurting too much!
When pain is persisting beyond the time when tissues have healed, then we have to go looking for the other drivers of pain. This is where things get really tricky. This is where we think back to the person with phantom pain and what we have learnt there about the brain — that your brain creates pain. In persisting pain, when things don’t seem to heal and just go away, and feel better, things get scarier. We want to stay safe, so we continue to look for disease and damage, and continue to ask for help. We spend a lot of money to get better, sometimes as our ability to work and participate in life decreases. Here we enter suffering — or at the brain level, Central Sensitisation. It’s hard to see light at the end of the tunnel, and even harder to fit in to an overstressed and time pressured health care system. Opiates make things a bit easier, both for Patients and Doctors (2), so there’s no surprise we prescribed them and crossed our fingers that it would work. It didn’t. People got addicted and lives continue to be profoundly affected. And pain persists. Buddhists have a doctrine of “all life is suffering” however in the context of medical care, we can’t accept that philosophy that we must endure. Human lives and potential is too important for that.
It would be really nice to have a pill to throw at pain, and have it work as a sustainable solution, but that won’t happen. From my years in clinical practice, treating pain involves a person’s whole life, and how they conceptualise their body and sensations. Sounds hard right? It is, and it isn’t. The science tells us that being able to explain pain and create new meanings and stories in the brain has a significant analgesic effect, even in the hard to treat conditions such as fibromyalgia (3).
Innovation in pain medicine might come in digital form like an online course or clinic, or perhaps there is a magic drug waiting to be released that changes central sensitisation of the brain. There’s a lot of promising research about how we can use Virtual Reality to normalise the brain in PTSD, and there’s similarities in pain. Your health professionals should be “Hope Dealers”, teaching you how things can and will change when we work together to keep your brain happy. Since that’s not something that many people with pain experience in the health care system, here’s my “help yourself” list of resources to start learning about pain and your brain.
The path out of the current challenges in pain management looks like a murky one, and one that we might be cutting a path through for many years. It makes us think of our mission here at PainChats, and in the words of Ralph Waldo Emerson, “do not go where the path may lead, go instead where there is no path and leave a trail.” May we all trailblaze in treating pain better, and seeing the whole person in the problems of pain.
References
This is part 4 of our series of posts about the lived experience of pain that came from the stories found here in the Pain Talks collection. Through these stories we’re crowdsourcing empathy for people living with pain, and using these stories as a basis for designing the future of pain care. We’re looking forward to seeing your comments below — did we understand, or did we miss something you need us to add? Let’s start a conversation.
“Why do I have this pain?” is a question that I hear everyday as a Physical Therapist. Most people with injuries — a sprained ankle, a torn knee ligament, a fracture — know how they damaged their body, and their pain makes sense. For everyone else with pain, without a well-defined cause, this question is an invitation to craft a new story and a new meaning about what pain is, so we can fix it.
We have to move on from injury as the sole reason for pain, and explaining all pain in terms of damage and disease. Much of the musculoskeletal pain we suffer is not caused by an injury, and that can even be true if there are nasty looking findings on an MRI. Studies tell us that structural changes do not always cause pain. All that causes pain is your brain’s perception of danger. If your brain thinks you’re in danger, it creates pain to protect you.
This can be hard to hear and to understand when you live with pain all the time. Pain when you do normal things like brush your teeth or climb stairs. Pain that is seemingly erratic and unpredictable, but steadily makes your life smaller. I know about those stories from listening to my patients in the clinic for many years, and reading the many stories online. If we do nothing as clinicians, we must listen. Listening helps us to guide people to a new story that makes sense about how they have gotten pain, what has happened since it started, and how change can happen step by step.
After many years of clinical trial and error (literally clinical “practice”) in finding stories that stick about pain, I’ve found this one the best to help people find their own meaning and resonance with pain. It’s a kind of silly story about soup (backed up by pain science).
Explaining pain requires a metaphor that people with pain can see their own stories within. I’ve always described pain like a pot of soup boiling over; it’s a simple and abstract metaphor that people can resonate with.
The choice of minestrone soup is important. Minestrone is a soup with a recipe and known ingredients, rather than an unknown collection of all the things you have on hand. Minestrone is not random, and neither is pain. However there can be variation in some ingredients, maybe some different spices, or someone gets creative and adds a wildcard ingredient (I’m just thinking how good chorizo sausage would be in minestrone).
This is quite similar to the factors causing pain. Generally the ingredients that go in to the pain pot are pretty standard — sedentary lifestyle, trauma or acute injury, short muscles and muscle spasm, poor deep stabiliser function, unnecessary rest, plus fear and anxiety. That’s very general, but that’s like the tomatoes, pasta, beans, carrots, onion, garlic and basil and parmesan. Some chefs might add some different vegetables, perhaps leeks or kale. Someone might decide that their Paleo minestrone can’t have beans and pasta, but the same flavours would be good with chicken. Or like I suggested before, spicy sausage adds the right flavour for you. In your pain pot, that spicy sausage could be your work stress or financial pressures. The different vegetables could be certain postures and positions you have to do in your particular life that aggravate your pain. Your pot likely has the standard ingredients, but it’s going to be unique to you. Pain is your own special recipe.
(I’ll add a short comment here to say that with some persisting pain conditions, these pot ingredients are not correct and there are different drivers for persisting pain that are hard to recognise and quantify. It’s part of what makes living with this disease such a challenge — and we’re working together to help and support people while we learn more)
When you have pain, your soup has boiled over. In your brain, there is an all-or-nothing threshold for pain to be produced — the threshold at which the brain decides you’re in danger. If you’ve been unfortunate enough to put force on your spine in the way that can cause a disc injury or some nerve impingement, then your brain has good reason to “boil over” your soup. In the same way breaking a bone or spraining your ankle are good reasons for pain because of damaged structures. It’s a curious thing though that broken bones usually stop hurting once they’re in a cast — they’re not fixed but we’ve made them safe!
Most people I see in the clinic have a lot of pain, their pots are boiling over like crazy, without an acute injury. They have a lot of pain, but nothing we can “see” to understand it. We can make many clinical findings, like short hamstrings, poor mobility, overactive muscles — but none of these explain why someone has pain. These are the ingredients in the minestrone.
There are medical findings that indicate dangerous reason for your pain. These are the red flags that we need to test for and make sure they are treated appropriately medically. An acute disc or nerve injury, infection, tumour or fracture has some very clear defining features. We need to rule out those red flags before we start talking about anything else causing your pain. Those are the things your brain should be worried about and making you hurt so you pay attention to them.
The “heat” underneath your soup is what you want to be able to do, and how much you want to stress and load your body. The ingredients that deviate away from ideal and “normal” give your brain the messages that things are not great in your body. Through the beautiful and magical sensory nervous system, all the messages about the state of your body are sent to your brain to be be made sense of. If your brain gets enough bad signals, your brain will create pain to alert you that something needs to change. Pain is literally a wake up call that your life is not good for your body.
Someone with many clinical findings that deviate away from normal and ideal is most likely to be “hot” — they are boiling over frequently. Normal activities heat up the soup, so these people don’t have a lot of tolerance for higher intensity activities. Sadly it’s usually the higher intensity things that contribute to quality of life — nights out dancing, playing sport, sitting on the floor with your children, walking in the mountains. Hot soup equals smaller life.
In Physical Therapy we see so many patients that never achieve “perfect” in terms of their body mobility and strength. They do achieve the level of function that they need to be able to do their lives without flaring up their pain. Through treatment and exercise, they “cool down” their soup enough to have all the fun that they want in life. They may have occasional pain but they know how to deal with it. Our goal in treatment is to get you “cool” enough that the fun stuff that you want to do in life doesn’t get you closer to boiling, and you can add a lot of “heat” before boiling over.
Different people with similar physical changes to their bodies can have vastly different boiling points. Some people have specific disease markers and conditions that mean that they boil over a lot faster. It’s still the same mechanism of the boiling pot, but the difference is pressure. The differences between people’s pain and functional abilities might make it seem like they live on different planets, and that’s a good way to understand pain threshold and tolerance.
Water boils on Mars at 10 degrees. Due to atmospheric conditions, it takes far less energy to get bubbling on Mars than it does on Earth. A person with an inflammatory condition such as rheumatoid arthritis can flare up their pain, and boil over their soup, with very little activity. Inflammatory diseases like RA and other arthritic and neural conditions have specific disease processes that keeps these bodies and brains “hot”. Medical management of many facets of these diseases is what keeps these pain warriors smiling and doing the most they can within their tolerance levels, and gives them enough space to be able to do physical parts of pain management like exercise and mobility work.
At the opposite end of the spectrum, if you happen to live on Venus, you won’t boil over until you’ve gotten to 300 degrees centigrade. That takes some serious work and energy to achieve, and these are the elite athletes, gym junkies and workaholics that don’t think they have a pain tolerance at all. They have a far longer feedback loop, but anecdotally, what they tend to find is that they push so hard for so long that when they do boil over, it’s quite spectacular. Like Icarus flying close to the sun, they have a long way to come back down to earth if pain occurs, and realise that they do have a body and brain that has some human weaknesses. They are human after all.
Perhaps your body is still on earth, but you’re living at a higher altitude. Water boils to 98 degrees centigrade when you’re up in the mountains. These are the people with a sensitive nervous system — perhaps with old injuries that their brain is listening out for signals from, or that have beliefs about pain being related to damage. When we find these people coming in to the clinic, they are usually “healthy but hurting”. This group of people have learnt to manage their sensitive nervous system for the most part, but perhaps a lifestyle change, increased work or their Mother coming to visit has boiled them over. These people know they are sensitive, and can often give us good clues about how we can help them, and they’re back to self management quickly.
Having a story that makes sense of your pain allows you to make decision that keep you cool. There are many ways you can help yourself and treat your own pain, and people that manage pain effectively have found the ways that work for them individually. Having a health care team around you that understand your story and continues to help you find the meaning in your situation is critical. Your “team” might also be much broader than Doctors and medical care — it might even be animals, nature places and creative pursuits that help you to keep your soup in the pot. They may not be “medical care” but your life is not lived in a Doctor’s office either. When we treat pain, we are treating a life and dreams and the desire to be a whole person.