Three Things I Learned From A Personal Trial of PEA

  1. It didn’t work for me.
  2. It didn’t harm me.
  3. It cost me $368 CAD for four months to find out.

Read on for the full story...

Normal everyday work stuff on my desk by lorange CC BY-NC-ND 2.0

Normal everyday work stuff on my desk by lorange CC BY-NC-ND 2.0

I’ve been studying a drug that has been touted for relieving various pains, especially neuropathic pain. It is called palimitoylethanolamide (PEA). PEA (let us now dispense with biochemical names for our own sanity) is not a drug exactly but is a substance made by our bodies. Technically it is a fatty acid. No, it won’t make you fat or give you heartburn if you eat it. It is related to the cannabinoids — those things found in cannabis and made by our bodies — and is important in cell to cell communication.

Macrophage by NIAID CC BY 2.0  

Macrophage by NIAID CC BY 2.0

 

So the deal with chronic pain these days is that we know the immune system is much more involved than we previously thought. There are two immune cell types that are thought to be invovled — glial cells and mast cells. What are glial cells? They are the most abundant type of cell in the central nervous system by at least 3:1 and maybe as much as 10:1 compared to neurons. If the actual neurons are the aristocracy, the glial cells are the commoners. The neurons get all the fame and attention and go to the coolest parties, but the glial cells really hold all the power and make it possible for the neurons to be so rich in the first place (read The Hunger Games). For example, if you get a tumor in your brain or spinal cord, a glial cell probably went rogue and started it. If your glial cells decided to stop working, all the aristocratic neurons would likely die of starvation. And if you have chronic pain, chances are glial cells are quietly organizing the revolution.

Just like commoners, the glial cells have different functions. The oligodendrocytes are chemical carpenters that wrap certain neurons with a fatty sheath called myelin which is like a slick skin suit on a swimmer — you go faster. Others have sophisticated jobs like the astrocytes which maintain a proper physical and chemical environment for good function and communication of the neurons. At the bottom of this feudal system are the microglia. Some people don’t even consider them to be true glial cells at all, instead giving them the lowly title of macrophage. Basically, garbage men. Microglial cells are resident macrophages in the nervous system. They clean up the garbage that our rich, energy hungry, neurons throw out and also “eat” up dead neurons (cannibalism, gross). An important function indeed, but they don’t like just being slaves to the “rich and fabulous” neurons, so they get up to antics. Sometimes they spike the punch at neurons’ parties by tossing around inflammatory chemicals that get the neurons all wound up and into mischief like chronic pain.

Mast Cell by Ed Uthman CC BY 2.0

Mast Cell by Ed Uthman CC BY 2.0

The other cells are mast cells. These are non-resident immune cells that roam around the body like mercenaries for hire and start bossing everyone around when they get excited by an infiltration of filthy invaders, like those barbarians from the North, the bacteria. Like all mercenaries, they have their good and bad sides. They show up and marshall the troops when your skin is cut so the hordes of bacteria waiting to get you can be defeated. But they also get bored when there is nothing going on and get up to hijinks. They show up when pollen gets in your nose and start releasing histamine and other chemicals that make your nose and eyes get juicy and your lungs get tight and wheezy, all, apparantly, in the name of self defence. Even though pollen is harmless. Like adolescents, they seem to like watching us grownups suffer.

When neurons themselves get injured, or when danger signals have been continually bombarding the central nervous system from some other tissue injury, then guess what? Mast cells show up and join their microglial cousins and make the already bad situation worse.

“Well, well boys! Looky what we have here. A bit of a breakdown in the power of the neurons. What say we have a bit of fun?!” 

Then they sashay about the place in their barbaric military garb throwing around their devilish chemicals and rusty spears while the toga clad neurons run about the place in confusion and fear muttering, "WTF? Damn working class!” The result is we suffer because the neurons get wound up and hammer even more danger signals to the brain as if there was a lot more tissue damage than there actually is, so we feel even more pain. 

Enter PEA. Remember that PEA is a signalling molecule made by neurons and immune cells. PEA naturally inhibits the release of pro-inflammatory chemicals from jacked up mast cells. So when your army of testosterone fuelled mast cells smells blood, or gets bored, and starts rampaging around spiking drinks and getting everyone amped up, PEA comes along like a chill pill and says, “Relax, Dude. You’re so tense. Why don’t you have a soak?” 

A lot of our body systems are like this, one part to crank things up, one part to crank things down, always finding the right balance for the given situation. The immune system is supposed to get involved to clean things up, but at the same time be controlled and not run away with itself. Why these natural processes evolved to cause us seemingly unnecessary pain is not well understood. I think of our evolution as a work in progress and chronic pain as an unfortunate side effect of that progress. Hopefully we will evolve ourselves out of it.

If the neurons send more danger signals to the brain because the glial cells and mast cells told them to, then anything that shuts down the microglia and mast cells should do the opposite and relieve pain, right? That’s the theory, or one theory. Taking extra PEA, beyond what your body already makes, might be like calling the cops to come and bust up the party that got out of control.

Because PEA is targeting the root of the pain problem, the very immune cells that make the neurons hyper-excitable in the first place, PEA acts more as a disease modifying agent rather than a symptom modifying agent. That’s if you want to call chronic pain a “disease”.

PEA is not some nutraceutical dreamed up by the holistic health movement that we are to take on faith alone — like shark cartilage, or Cat’s Claw. It has actually been studied in clinical conditions and the results show some promise. One study involved 600 people with sciatica. For three weeks, randomized and blinded, 200 people took placebo, 200 people took 300 mg PEA/day, and 200 took 600 mg PEA/day. There was a significant dose dependent response in the PEA group. The 300 mg/day group showed more reduction in pain than the placebo group, and the 600 mg/day group showed more pain reduction than the 300 mg/day group. 

The response was very good as the number needed to treat (NNT) for 50% pain relief in the 600 mg/day group was only 1.5. In other words you only need to treat, on average, 1.5 people with sciatica with 600 mg PEA/day for 1 person to get 50% pain relief. That’s unheard of in the pain world! The best we have otherwise is amitriptyline with NNT of between 2 and 3 for neuropathic pain.

I’m a little skeptical when I see results like this since it is only one such study. Most treatments have a decline in the size of the effect as more and more studies are added and I expect PEA will be no different. It doesn’t mean it will work for everything and it may never work this well again in other studies in same groups of people.

In another study of 600 people with various types of pain (sciatica, arthritis, shingles, cancer, diabetic neuropathy) PEA treatment of 1200 mg/day for three weeks followed by 600 mg/day for four weeks showed the average pain score across all groups decreased from 6.4/10 before treatment to 2.5/10 after treatment! That is a remarkable reduction of 60% and again is unheard of in the pain world so I remain skeptical of the result until it is repeated by different research groups. This was an observational study so there was no blinding. People knew there were taking PEA and there was no control group. Observational studies like this commonly show a greater effect size than randomized and blinded studies with control groups.

It also didn’t matter which pain condition was being treated — they all benefited. That could be another reason to be skeptical, as it is rarely the case that a pain treatment works on every kind of condition. Alternatively, it could be that the way PEA works is far enough upstream in the danger system physiology that it is common to most chronic pain conditions.

A trial of 1...

All of my reading gave me enough evidence to give it a try for my own neuropathic pain. I ordered enough from RS4 Supplements in Europe for four months. It came directly to my house by Fedex. No customs or Health Canada issues to deal with. For the first two months I took one 400 mg capsule three times a day (1200 mg/day). I kept track of my pain scores on a pain tracking app on my phone. I kept track of the medication I normally use (gabapentin, baclofen and sometimes ibuprofen) also on the app. I kept track of any side effects in a journal.

Over two months basically nothing happened. My neuropathic pain, which is quite variable day to day, essentially stayed the same. I used the same amount of medication, and I didn’t feel any side effects at all.  

I increased the dose to 2000 mg/day for another six weeks. Unfortunately, nothing happened. So I’ve stopped it. My pain did not get worse after I stopped it.

Does that mean PEA doesn’t work? No. It just doesn’t work in me. I was disappointed because I wanted it to work. Of course this is why a single story like mine, called anecdotal evidence, can be very misleading. Bias creeps in because we want or don’t want something to work. Maybe we have fears, or heard somebody else say something about it, and all of that can influence how we report our pain symptoms. So take my story with a grain of salt.

Another possibility is that the mechanisms generating the danger signals going to my brain could be different. I have a spinal cord injury. It’s not that commonly studied in big pain trials. The patients in these trials had sciatica, diabetic neuropathy, and shingles, among other things. They likely have different mechanisms than central nervous system injury.

Maybe it has something to do with genetics? Maybe it has something to do with the fact I was injured 20 years ago? Maybe this kind of therapy works better early in acute pain that is evolving into chronic pain? We don’t know the answers.

I will continue to monitor the research and continue to discuss the consideration of a trial with my patients. I think there is some merit to consider it for neuropathic pain. From what I can see the downsides of a trial are that it will cost about $200 for two months of time for a trial. There may be unknown side effects or drug interactions but so far that has not shown up in the research. If you do consider a trial please discuss it with your health care professional first.

We need to keep finding ways to control the negative effects of immune system stimulation!  If you’ve tried PEA, let me know your experience in the comments. If you have questions, please ask.

 

 

 

I'm Back.

I was away from the blogging turret for awhile.

Last month I gave a speech at a joint Pain BC and TLABC (Trial Lawyers Association of BC) conference providing pain education at the important intersection of medicine and the law, where people with injuries often end up.

My speech is embedded here and was a bit of an exploration for me. It probably explains my absence from blogging lately too.

My thanks to TLABC for hosting, webcasting, and providing me the video to use.

14 Seconds

Toni sits across the exam room edgy and slumped, drying tears tracking through her mascara and makeup like little snowplows. She is 47 and doesn't understand how her life could possibly have been demolished. On top of her game, she went from an active and social, fun loving, well-dressed, accomplished consultant to a fragile, sleepless, friendless, jobless, hopeless wreck in 3 years since a relatively minor car accident. She blames it all on her pain.

In the brief pause we find ourselves silently looking at each other, a gulf widens threatening to swallow us both if we aren't careful here.

In Search of Lost Time by Alexander Boden via CC BY-SA 2.0

In Search of Lost Time by Alexander Boden via CC BY-SA 2.0

Unbidden, I immediately feel sympathy, pity. I'm not supposed to. I'm supposed to empathize, not sympathize, but I can't help it. It's human. Her story sucks and I feel sorry it has happened. In the next second, I silently conjure empathy, imagining how I would feel in her shoes. It is not pretty and realize a fury I have not known for awhile is what would arise. A fury I am sure she has also known, but has long since burned out, vanquished, as the weight of her world blackholes in on her. I see she is stuck, feeling cornered with no way out. I have trouble imagining this stuckness, even if I understand it, because "stuckness" is not something I can remember feeling for very long. There was always a sliver of light somewhere to follow. Then I realize, it is not stuckness she feels, but hopelessness  more severe, intractable stuckness that I have never felt. I try to feel it, or imagine I do. I can't. Lucky me. Sympathy returns when unable to empathsize. Fear comes next as I feel helpless in the face of her hopelessness. Wait, maybe I do empathize — is helpless the same as hopeless? What do I do with this?  Now fear turns to panic as my "Doctor DNA", pounded into me by years of training, kicks in. "Do something!" it screams. "Say something! She is here for your help you idiot, do you have nothing!? You're a doctor for Christ's sake! A specialist!" 

"That's not helping," I say. Next comes doubt. Can it really be this bad? How is it possible she can't pull it together? It was a fairly minor car accident. Then suspicion: is there something else going on? (I imagine my eyebrow rising Colombo style and hope that it really isn't.) Are these prisons she feels stuck in real or illusory? Brief rapid thoughts, protective against my helplessness. Victim blaming in essence. It doesn't matter the origins of her prisons. She is in them; they are real. My mind arguing against itself now. But is it just the pain? Of course she has pain. I believe it implicitly and understand how her neurobiology can make it happen. But there are other layers. She wants the fix I imagine. Of course she does. I would too. But I see all the layers in their messiness. The fear. The husband. The litigation. The injustice. The drinking. I know I don't have the fix. Not here. Not today. 

Sympathy, empathy, helplessness, fear, doubt, suspicion, belief

These cognitive gymnastics, in this silent gulf, are not helping. Let's move on shall we? A lot has been tried, and she is still in pain. Look for the sliver of light, maybe we'll find a way out. The Doctor DNA wants a clear confident answer, to not appear weak, vulnerable or vague. No bullshit. It might even tell a story (or bullshit?) to save face. The human DNA is unflapped by all of this and says, "Start by passing her a tissue." Human DNA wins.

All this occurs in 14 seconds. I don't know what thoughts she had as she stared at me composing herself behind drying tears. I pick up the box of tissues and hand her one. For the briefest of moments we squeeze hands with a crumpled Kleenex in the mix. "Let's see what we can do," is all I can offer, hoping my weakness is not overly obvious and attached tenuously to that sliver of light. She seems to feel better, giving me some courage to also go on.

I have failings as a human being and a doctor. Thankfully, Google hasn't found a way to record and publish them. A team helps reduce them. Often it is a team of two — patient and provider.

Do we ever examine our thoughts and weaknesses when faced with the pain and suffering of others?

 

Toni, like all "patients" mentioned in this blog is fictional, conjured from an amalgamation of reality and imagination.

Consistency Is For Cattle

I didn't grow up on a farm but my maternal grandparents were Saskatchewan farmers. I always enjoyed poking around the farm watching my grandfather work. One thing I learned is cows will dutifully follow any routine you set for them without much fuss. They rarely do anything unexpected.

One thing you won't find in these pages is such consistency from me. Already, when I look back on my last couple posts I see that on one hand I have advised "don't give your pain too much attention" and on the other that there are "no boundaries" between your pain and other parts of life. I'm sort of saying "keep it away from parts of your life" and that you can't "keep it away" at the same time. This is likely frustrating for some. Living a life with pain is just like living a life without pain (is there such a thing?) — there are many ways to live it successfully.

What I share on this blog are things I have thought, observed, studied or read and the impact that has had on me, as a person with pain, or the people I've tried to help with pain. These tidbits come from people's stories  and from the published scientific literature. The science is growing tremendously and there are many areas of agreement, but still much to be learned and sorted out.

There are three potential sources for inconsistency in what I write:

  1. personal stories have shown me different things help different people
  2. what I say in the future may contradict what I say now because the story of what helps, and the evidence to support the story, is still being written
  3. difficulty in writing about mind and body

Let me expand on the third point. Chronic pain is at the epicenter of a struggle of mind/body dualism. The dualism refers to the objective nature of disease or injury of the body and the subjective nature of experience of the mind. As we have said, pain is an experience and thus belongs firmly in the mind, in consciousness, but everyone knows when you cut your finger it hurts. So we feel as though something is happening "to us" in the body to cause pain, yet the experience itself is generated "by us" in the software of our mind. This opens up entangling loops of cause and effect getting us into all sorts of troubling conniptions. All the struggles about chronic pain we have in the healthcare, insurance, and legal systems, in science, policy, culture and everyday interactions with people can be traced back to where one sits on the mind/body dualism fence. It can be maddening. 

A foolish consistency is the hobgoblin of little minds.
— Ralph Waldo Emerson

Even though I know that there is no mind/body separation, I find it difficult to not think about them separately. This has a lot to do with language and words, which by their nature are divisive. So thinking, discussing, and writing about body and mind as one is almost impossible as we don't have words for it. With a patient, I am at one moment talking about something in their body as a "pain generator" (like that cut finger) and the next moment talking about "mental factors" that can reduce (or increase) pain. Finding ways to talk about this as one thing is challenging. It can give the appearance of being contradictory. Sometimes I find myself searching a patient's face for some non-verbal sign that they "get" what I am clumsily trying to explain with words. Stories often work a lot better. I'm sure I come off as a charlatan sometimes, but that is the risk one takes in occupying an unfamiliar and perhaps uncomfortable space.

In his essay, Self Reliance, Emerson said, "A foolish consistency is the hobgoblin of little minds." He referred to not being consistent or conforming just for the sake of appearances — especially when new information comes to light. There is likely to be a lot of new information about pain coming to light in the next decade.

Unlike the cows I watched as a child, I intend to be a bit controversial, contradictory and act unexpectedly knowing we need this sort of disruption to challenge our assumptions. The only thing I'll be consistent about is a desire to see progress in pain relief and empowering people to lead better lives and help each other do so.

Have you experienced contradictory ideas about chronic pain and treatment?

Two Journals: On Pain, Fun, Boundaries and Battles

I'm only in my mid-40s but my kids say I'm already a bit old fashioned. I've kept a journal since my 20s. Born and raised in the pre-digital age but matured in the post digital age, I've kept track of thoughts and to-do lists with both paper and digital devices. Mostly, I still like to scratch notes in a paper journal.

Notebook Collection by Dvortygirl  under CC BY

Notebook Collection by Dvortygirl  under CC BY

The funny thing is that I have two journals  one for thoughts and musings about life, and one for work notes and tracking projects. It always seemed natural to me, if maybe a bit nerdy. Finding all your notes and action items in one place is helpful without a reflective journal entry from a forest walk distracting you. You might not want sketching interrupted by a reminder to pay your utility bill either.

But I realized there was more to it than that. I actually wanted there to be a separation between what I consider work and what I consider pleasure. Don't get me wrong, I love my work but I don't exactly consider it pleasure. I haven't wanted fun and big thoughts to be cross contaminated with work and getting things done. So I created a boundary with two journals.

But this is a bit artificial. Are there any real boundaries — two journals in life? Does it unnecessarily consume energy when we erect walls (symbolic or real) between parts of our life? Perhaps we could better use that energy elsewhere. Philosopher Ken Wilbur thinks so:

The simple fact is that we live in a world of conflict and opposites because we live in a world of boundaries. Since every boundary line is also a battle line, here is the human predicament: the firmer one’s boundaries, the more entrenched are one’s battles. The more I hold onto pleasure, the more I necessarily fear pain. The more I pursue goodness, the more I am obsessed with evil. The more I seek success, the more I must dread failure. The harder I cling to life, the more terrifying death becomes. The more I value anything, the more obsessed I become with its loss. Most of our problems, in other words, are problems of boundaries and the opposites they create.
— Ken Wilber, No Boundary: Eastern and Western Approaches to Personal Growth

How many of us do this with our pain by separating it from other parts of life? You have probably created distinct times and spaces where pain is allowed and where it is not. I have too.

I'm not saying to change this practice. The purpose of drawing attention to the boundaries we have created is to shine a light on the unconscious decision. Why have I drawn this boundary here? It might be about pain, but as Ken Wilbur reminds us could be about any number of things. Look around, you'll see all kinds of boundaries you've drawn. Ask if it serves a purpose. If so, keep it. If not, experiment with breaking it down. Consider it may be an unnecessary battle line. If you have pain, perhaps walling it off is costing you something.

Why have I drawn this boundary here?

The two notebook approach might be practical but is also symbolic of a boundary I drew that says 'serious work' can't also be 'fun life'. Hmm, really? Why did I decide that? What am I defending? Maybe seeing a sketch from the weekend beside my calendar would be nice.

Boundary by Joshua Hilgart-Roy under CC BY-NC

Boundary by Joshua Hilgart-Roy under CC BY-NC

I encourage you to ask similar questions with any boundaries about pain, or other things, you've drawn.

 

 

Do you have any answers you can share in the comments?

The Important Matter Of Paying Attention

When I was on my honeymoon I nearly ruined the whole thing because of my pain. I was absolutely miserable. My mind was plagued with questions about it. What was going on? What kind of crap was this that after coping with my injury I was now getting all this pain? I was keeping a journal about my pain. My wife could see by my face it was never far from my mind. It really sucked actually. Its a good thing the Internet was sparse then as I would have never left the keyboard. The Maui sun, sand and sea could only do so much to wash away the experience.

I was fueling it all with the only thing we can really control in the world, attention. Attention is like sunshine, like love. What you direct it toward thrives, what you deprive it of withers. I was showering my pain and the negative emotions about it with the equivalent of rainforest conditions: sun, warmth, water and nutrients and it grew like tropical vines, banana trees and orchids in all the attention. It was a greenhouse of pain fertility.

Did I need to go through that? Probably. Maybe that's just part of moving on. Do I wish it was shorter? Yes. Thankfully it didn't ruin my marriage.

     When I have pain now, it's a bit like, "Hey, remember me?"

     "Yes I remember you, relax. Let's not get into a big battle like we did in Maui OK?"

     "Alright, just so long as you give me a little love."

     "OK. I don't know about love, but I'll give you a little attention."

It's a kind of truce. I give it as little attention as possible while directing attention elsewhere to things I want to thrive. Through this, I've managed to change the story about my pain and I think that must be pretty important somehow. 

Sketch from my journal 2001

Sketch from my journal 2001

There are questions that I can't clearly answer:

  • Is my pain actually less now or am I just less bothered by it?
  • If it is less, (it seems like it is), is it because I don't pay as much attention to it, or did something just get better and heal?
  • If I'm less bothered by it, how did that happen exactly? Did I just choose that? Did I come to understand it better? Did I feel more supported and understood by others? 

I suspect the answer is "all of the above." 

Attention on pain is only one of many layers to the experience. Your attention is one of the most powerful resources you own that is completely within your control. Pain demands our attention because doing so usually means a survival advantage. We take care of our painful wounds if we pay attention to them. But once chronic, does our survival depend on paying attention to it? What if there isn't a wound to take care of anymore? 

Ricardo Liberato  Attention to detail

Ricardo Liberato  Attention to detail

Experiment with paying less attention to pain and your story about it than you have been. It probably won't go away, but it might wilt a bit like a plant suddenly deprived of water and warmth. Maybe you'll just be less bothered by it while diverting attention elsewhere. 

Funnily enough, one night while editing this post my pain was jacked up  perhaps it was celebrating being written about again. I asked it not to let it go to it's head. :)

What are your experiences with attention and pain?

Simple It's Not I'm Afraid You Will Find

Pain As Fifth Vital Sign.PNG

I read a post on the blog Skeptical Scalpel written by an anonymous retired U.S. surgeon. The writer proposes that the 1999 Veteran's Health Administration campaign of "pain as the 5th vital sign" — the goal was to make measuring pain as routine as taking vital signs such as heart rate and blood pressure — lead to the discovery of new diseases with pain as the only symptom, the creation of a whole bunch of new pain clinics, and the current epidemic of prescription opioid drug abuse. With the utmost respect, I think it is not so simple. There is risk in proposing that a complex problem has a simple cause because there is the potential of proposing a simple, misguided solution and feel that you are done. We are programmed with mental shortcuts by evolution in order to make survival decisions in a complex, dangerous world. Unfortunately, these biases can make it difficult to solve modern complex problems. 

Searching through the document from the VHA referencing the campaign, you will find the words "opioid", "narcotic", "hyrdomorphone", "oxycodone", "fentanyl", or "Percocet" do not appear at all. The word "morphine" appears exactly once in a reference list. Prior to the VHA campaign, the American Pain Society coined the phrase "pain as the 5th vital sign" in 1996 in an awareness campaign driving at the importance of pain assessment. It was a concept, not a clinical practice guideline and also said nothing about treating patients with opioids.

Conditions or diseases with pain as the most obvious symptom, like fibromyalgia or complex regional pain syndrome, or back pain, are not new. They've been around and documented for centuries but called by different names and all have suffered from varying degrees of stigma depending on the cultural and scientific understanding at the time. To say that because we pushed to make measuring pain standard caused these conditions to spring into existence is wrong. 

While it is true there are more pain clinics now, they are mostly single modality clinics that either give injections or medications or both and are thus firmly routed in biomedical broken part thinking. We know that pain is a multidimensional experience so when we solely focus on biomedical treatments they can have a high failure rate at improving long term function. These clinics exist because multidisciplinary clinics were disbanded as too expensive and we paid people well to do things like injection therapy and medications and we stopped paying for things that are more time consuming like education, self management support, and integrated care across space, discipline and time. This is more common in the U.S. system.

Credit: Guian Bolisay

Credit: Guian Bolisay

There is no doubt we have a major problem with prescription opioid abuse and overdose deaths. The evidence is clear that it a growing problem that coincided with prescribing opioids for chronic non-cancer pain (and don't think that because the blogger is in the US system that it is different in Canada. The evidence is that the problem is just as big here.) But, the causes of that problem are more complex than a campaign aimed at making sure we ask people about their pain.

Back to thinking errors, the error in linking all these problems to a simple cause, like measuring pain, is that the obvious solution (mistaken) is to stop measuring pain. This would be a panicked over-reaction. If you stop measuring pain (the blogger did not suggest this, but may have been implying it by linking it to the opioid abuse problem) you'll end up with a lot of unintended consequences in the other direction: more pain stigmatization; further entrenched ideologies; pain in the closet; less research; more difficulty accessing pain treatment including when opioids are helping and not harming; etc, etc, and the pendulum will continue to swing.  

In this amazing artistic infographic I've summarized my bird's eye view of progress and setbacks in pain management in human civilization*:

* opioid abuse and deaths are indeed a very scary problem and I'm not making light of it — it's what we do next that counts

* opioid abuse and deaths are indeed a very scary problem and I'm not making light of it — it's what we do next that counts

The push to measure pain within VHA institutions and by the APS was the right thing to do, launching advances in pain care and pain research. But like all advances there can be problems. Measuring and asking about pain was one of many factors that created fertile ground for the massive prescription drug abuse problem. It was associative, but not causal in it's own right. For more on the story of opioids afterward read this, which explains how the good intentions to measure pain may have become tied to prescribing opioids liberally without safeguards.

We now have a choice. We can either reflexively react with a backlash against pain awareness and measurement, or we can take an urgent and collaborative approach to work our way out of it with the twin goals of improving chronic pain outcomes and reducing deaths from prescription drug abuse and diversion.

The blunt tool used by regulators to limit opioid supply through making it more difficult to access opioids, more difficult for doctors to prescribe them or to make them scared enough to not prescribe them will not solve the problem. Like the war on illicit drugs, prohibition works to a degree, achieving partway the goal of reducing harm, but creates a lot of other harms and does not lead to further understanding and solutions.

Here are some ideas for a recipe out of the prescription opioid problem:

  1. Develop mentoring programs to help build skills and confidence in primary care settings to assess, manage, and yes, measure pain and functional outcomes
  2. Host conversations and create action oriented collaborative structures for those healthcare communities that manage pain and those that manage addiction, to reduce ideological positions and improve outcomes and safety
  3. Create integrated systems that cross disciplines, cross healthcare settings, and span time to assess and manage the multidimensional experience of pain
  4. Develop prescription opioid policies, regulations and education that will both improve access AND improve safety, reducing diversion and deaths
  5. Create public awareness about the proper role of opioids in pain management, their limitations and harms including:      
    1. that there is a balance between the rights of an individual (access to pain care and opioids) and the rights of society (safety from harms of diverted or abused opioids)
    2. that good pain care does not automatically = opioids
    3. that the goal of opioid therapy (or any therapy) is improved function

There are good things happening. Some examples that I know about:

  1. Atlantic Mentorship Network for Pain and Addiction 
  2. ECHO Ontario, based on successful video mentorship platform in New Mexico
  3. Practice Support Program for pain management in British Columbia
  4. Greater range of self management supports available: Pain BC, and here and here
  5. Innovative community practice models such as CHANGEpain clinic.
Credit: Theen Moy

Credit: Theen Moy

Does this mean we are done?  No, not even close. My point is that as long as we keep two steps forward and one back, learning from missteps, we will make things better.

Let's continue asking about pain and measuring outcomes.



One Part Hope. Two Parts Fear

Many years ago, a woman came to see me. She had pain for a long time and had been through many treatments with only marginal improvement. Likely she had fibromyalgia. She had a troubled past with fragments of her narrative including sexual abuse, forays into substances to cope, and other physical ailments. But she had a spark of resilience and somehow came through all of that to carve a meaningful life for herself. Except now she was facing a rare terminal disease that would give her a few more years. 
It was one of those moments, “Seriously? After all this crap, I've sort of figured out my life, and now this?" It was enough to make anyone weep.

Except she wasn't weeping.  She came to see me just 'in case' there was anything else—something that wasn't tried. She had some pain from her terminal illness, but its cause was obvious and was managed well. She came to talk about the lifelong widespread pain. The cause of it remained a mystery as it shifted around her body, associated with other symptoms. Through our discussion it became clear to me she really wasn't expecting any miracles. She was knowledgeable about her pain and practiced a variety of self management techniques. I ticked the boxes of looking for other problems, scanning her treatment history, and concluded there wasn't much to add. So we just enjoyed our conversation.

Then something happened. My guard was down. The pressure to diagnose and cure was off. One human conversing with another, and I said, "You know, we aren't really sure why you've had all this pain. We can call it fibromyalgia if it helps. One day we'll have a better explanation." 
She nodded. 
I went on, "But since right now it's a bit of a mystery as to why it all came about, I can allow, that equally mysteriously, it could all just go away." 

Two things happened next. First, a complete change came over her. If ever you could say someone's face was beaming, you would have said it here. With a big genuine smile, flushed cheeks, upturned chin, moist shining eyes, she said, "Really?!” 
It was like I was suddenly explaining the wonders of nature to a little girl in the forest. It was a little alarming and lead to the second thing.

That part of my medical defenses that was down and taking a nap immediately woke up and commanded, What did you just do???!!! Did you just make a promise that you can't deliver??!! Flummoxed, I back tracked a little to a make sure she understood it wasn't a promise, but an allowance that mysterious things can happen. It was a bit unorthodox to say such things in a medical visit, but it didn't feel like a regular visit somehow. We talked a little more and then she left, appearing lighter. I sat alone wondering what had just happened, somehow heavier. I never saw her again.

I've thought a lot about that encounter over the years. Why was my reaction to her sudden happiness so fearful and strong? Internally, it was suddenly all about me and not her. What was it I had witnessed in her? 

Credit: Darren Tunnicliff, flickr

Credit: Darren Tunnicliff, flickr

I realize now that it was hope. Hope is not tied to promises and is therefore free to give away without any strings attached to it. So why are we so stingy with it in healthcare? We talk about false hope. What exactly is that? Hope is hope. How can it be false? You are not on the hook for someone's hope. Promises are different, but we confuse the two. When allowing for hope, we don't want to mislead. We don't want to twist the statistical evidence of what has happened in the past to make things appear much rosier than they are. But I don't believe I did either. Obviously, it is much better if you can tie hope to strategies to bring about a desired outcome. In this case, I could not think of anything not already being done for her. My hands were empty and hope was all that was left.

On the other side is fear. An exchange took place in that encounter. She took on hope; I took on fear. I tied myself with strings to her hope. I made myself accountable to her hope, which led to the fear because I had no action to give her that would bring it about. The challenge, at least for me, is how to give hope without taking on fear, without feeling accountable for delivering the hoped for outcome, to be vulnerable. Is this wrong?

Perhaps this was a special encounter; after all I don’t go around to everyone saying, “Don't worry, it will all probably go away!” In fact, I'm not sure I've ever said it like that since. But I've become much less stingy with allowing for better outcomes than what is thought likely and encouraging more hope, usually tied with strategies.

With respect to fear a larger question emerges: why are we afraid to engage more deeply with people living with pain?  
Are we afraid of being inadequate, looking foolish, standing with empty hands?  
Are we afraid of being wrong? 
Are we afraid of being swallowed whole by the depths of someone's suffering? 
Is the pressure to rescue someone so great that we can't even bear to start the conversation? 
Are we afraid that if we become known as someone who listens, cares, and gives hope that the throngs of the suffering will beat down our doors yearning to be cared for, touched, or at least for a moment, accepted? 

Credit: Julia Wolf, flickr

Credit: Julia Wolf, flickr

I know that these are real fears for caregivers. Look, I’m no saint. I still struggle with all of them (where else would I find them?) but that encounter started me confronting them. There are practical realities behind some of the fears that need addressing through research and better system design. But many are just phantoms and say more about us, how we were trained, and how we work.

If you are a person with pain, do you get hopeful messages from your healthcare providers? Do you want more? Or is hope itself a waste of time for you?

If you are a healthcare provider are you afraid to give hope? If so, why? How do you give hope?

My wish is to see us change the recipe to at least two parts hope, one part fear.

How Stuff Works — Does It?

I came across this post, How Does Chronic Pain Management Work, at Healthskills Blog by Bronwyn Thompson. If you have pain or help people with pain do yourself a favor and follow her excellent blog. The post asks us to consider what parts of a pain management program may be working to help people with pain get better and whether the research done to date answers that question very well. I'd like to expand that beyond CBT and self management skills to include all treatments for chronic pain including biomedical ones like medications and injections. As Bronwyn Thompson points out, the trouble is that we study treatments in isolation to determine if there is a real effect, and on groups of dissimilar conditions where the only common factor is the presence of pain. The research result is often that the effect of anything is pretty small or nil.  Yet we all know people can and do get better. So why? Is it something in the treatment? Is it attention itself? If we do nothing do some people get better anyway? If it has anything to do with treatment we gave, which part of which treatment, or group of treatments was responsible? 

My view is there are no magic ingredients. You need a matrix of options to deal with the matrix of your pain. Every ingredient is a tool. Just like carpentry, a single tool doesn't work for all jobs, and all jobs require different sets of tools.  The process of using those tools needs to lead to a better outcome. Better is in the eye of the beholder — the person living with pain. Does it matter what tools you are using in the process as long as you are improving (and there is no, or minimal, harm)? If having a needle based therapy floats your boat and gets you movin' and groovin' — keep doing it.  If talking through issues you are having, whether pain related or not, is working, then keep talking. But before you think I'm an anti-evidence based quack, progress needs to be measured to determine the value of the therapy, and the chosen measurement is based upon the desired goal. Then we need to distinguish between short term benefit and long term benefit, as the former is common and can be due to nonspecific treatment effects, commonly known as placebo, and the latter we think of as "real" treatment effect. Real versus placebo is another issue entirely and worthy of another post.

The only thing real to me is whether the person is moving forward or not. Are they reaching their self-determined goal? Maybe that's less pain, but maybe it's to be able to walk their kid to school each day. In this respect, pain management combines medical knowledge with coaching approaches. There is a context that includes specific knowledge of broken body bits, neurophysiology, and biomedical disease in addition to knowledge of coaching theory, psychology, and social processes.  

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But I realized I'm conflicted here: on the one hand, as long as someone is improving, I don't care how it happened or what we believe was responsible for it. On the other hand, I want to understand why things work, and the scientific method of discovery is still the best way to do that. This is why this blog is so important to me. We are taking the hard scientific method and applying it to something entirely, and utterly human, subjective and purely conscious. It is not easy. (It also leads to another question to explore another time: what should we pay for? Do we pay only for the thing we can explain and show works, or for anything that seems to work even if we have no idea why or makes no sense? How do we define "works", when it comes to deciding if we pay for it or not? How much does it have to work and for how long?)

Back to Bronwyn's post, it is reasonable to assume that we will have similarities in our physiology, psychology, and social processes despite the huge individual differences that exist. That means as we unpack what "works" through better experimental design, it is also reasonable to assume we will find certain things that work better than others, and groups of things that work better together than other groups of things. We should be able to predict with greater accuracy what will work for someone long before a trial and error process risks deterioration in physical and mental function. It's a tall order and a long way from Star Trek's Tricorder diagnostic thingy. But if we don't proceed we will continue to fumble around in the dark, vulnerable to snake oil and those wishing to profit from our pain, fiddling while Rome burns.

As for my conflict, I try to satisfy it by advocating for the research answers and keeping up to date, but if someone is getting better with non-evidenced treatments or stuff I can't explain, I just celebrate their success, tell them to keep going, and see if I can learn something from them.