Too much of a good thing: when people don’t really *get* pain science

I wanted to share a really important post with you all this morning, from the author of Chronically Undiagnosed.

She’s a therapist who is dealing with chronic illness.  Recently, she wrote about her experience attending a chronic pain support group that incorporated some of the theories of modern pain science… but did so very badly.

As someone who fervently believes in what pain science has to offer — it’s what originally inspired me to become a physical therapist– I have often felt many of her same frustrations, when people try to stretch pain science beyond the limits of its intended applications, or when they lump in their own personal beliefs about pain which have nothing to do with the actual scientific literature on the subject.

Reading her post, it sounds as though the social worker leading the class did have a basic understanding of pain science.

(By modern pain science, I mean the school of thought that says that pain is a function of our brains that’s meant to protect us, and as a protective mechanism, it doesn’t always work perfectly, or give us an accurate way to gauge what’s actually happening in our bodies. People can experience devastating injuries and feel no pain, or they can experience excruciating pain from injuries that are technically “minor.”  Pain scientists believe this knowledge can help us develop new treatment approaches, once we begin to tap into the fact that pain is here to protect us.  Some of the original proponents of this approach include David Butler and Lorimer Moseley).

It sounds as though Chronically Undiagnosed’s group leader did present some of these anecdotes, to prove that pain can be subjective.  But she did so in a way that was alienating to the group participants.

Chronically Undiagnosed writes:

“The instructors have cited reports of individuals who have either been injured and experienced no pain, or individuals who thought they were injured (but were not) and experienced extreme pain. One example was of a roofer who landed on a 6-inch nail that went through his steel toed boot who presented in the E.R with reports of excruciating pain. He was medicated for pain and the boot removed where it was discovered that the nail had gone through his shoe but between his toes, resulting in zero tissue damage. Additionally pictures of MRI’s were shown where a person had visible spine damage but no pain.

As someone with an advanced degree who has studied and taught research and statistics, I find fault with their examples. In a scientifically based research study, extreme results such as these are considered “outliers” and are not considered statistically significant. And as someone who has both counseled patients with chronic pain and experienced it daily for over 5 years, I find their assumptions to be not only scientifically incorrect but harmful to people experiencing chronic pain.

And now here come the people touting “modern pain science” as a breakthrough in treating pain. If pain is simply a perception created by the brain, then if we change our brains the pain should go away. When I expressed my concerns to the leader of the group she suggested that leading medical institutions in our country (such as Stanford, where I received “injections” that helped me) are “behind” in understanding pain.”

Reading about her experience made me really frustrated and sad, because I had a totally opposite experience when first presented with this information.

However, when I first came across it (under the guidance of my physical therapist Tim, and through watching physiotherapist Neil Pearson‘s lectures) I understood these stories– which ARE statistical outliers– to simply be examples illustrating how pain works.

They are extreme examples, but they demonstrate the fact that pain does not always provide an accurate indication of what is wrong in our bodies.  These stories are meant to educate, not to give people the impression that they ought to be able to magically “turn off” the pain in their brains tomorrow.

Following this, it sounds as though the social worker leading the group made another key mistake, one that I absolutely can’t stand:

She lumped her own personal beliefs about pain in with the theories of modern pain science, without making any distinction in between the two.

I’ve personally seen this before.  The first doctor who ever told me I had a heightened sensitivity to pain never actually told me about any of the neuroscience research behind this phenomenon (central sensitization).  Instead, she told me I was probably suffering from some form of psychological trauma, and that the only way for me to get better was through psychotherapy.

Years later, when I had finally discovered pain neurophysiology education, I found that the people actually researching modern pain science never talked about childhood trauma (or any other kind of psychological trauma).  They didn’t need to– the theory of pain as an imperfect protective mechanism was enough to explain so many of the things that could sometimes go wrong with it.

That’s not to say that no one, ever, experiences physical pain as a result of emotional trauma.  That’s not what I’m trying to say either.  But it’s wrong to be leading a group where you’re presenting people with the theories of modern pain science, and lump in your own personal beliefs about pain without making a distinction.

She did actually lump in other grains of truth.

Some of the other information Chronically Undiagnosed’s social worker presented is, technically, legitimate.

It is true that MRI’s are not always the best predictors of who will actually experience back pain.  There’s a great book, Back Sense, that talks about this.

In a nutshell, if you were to take 100 people off the street and take an MRI of everyone’s spine, you wouldn’t necessarily be able to tell, just by looking at the MRI’s, who was actually experiencing back pain.

We all experience some degeneration to our spines over time, but sometimes this degeneration can be symptom-less.

However, this information should never be used to tell a group of chronic pain patients they shouldn’t be experiencing any pain!

All of these bits of knowledge, which can be helpful– whether it’s pain science, or Back Sense– are meant to be one piece of the puzzle!

And they are meant to help illuminate aspects of patients’ experience.  They are meant to educate.  

They are not meant to blame people, or make them feel responsible for experiencing pain they shouldn’t be feeling!

I see this far too often in the field of pain science.

As a (hopeful) future physical therapist, I’ve followed a number of physical therapists, writers, and researchers on various social media platforms, hoping to learn more about how the field of pain science is evolving.

Unfortunately, I’ve had to go back and actually “unfollow” a bunch of people, because I see the same thing over and over again.  People will get annoyed and actually downright snarky about patients and fellow medical professionals trying to treat certain conditions which are the subject of controversy– the sort of “gray areas.”

One of these areas, in particular, is the sacroiliac joint.  There are a lot of physical therapists out there who don’t believe sacroiliac joint dysfunction is a real thing.

So I’ll sign on to Twitter, and find that someone I respected and followed to learn more about pain science is tweeting out some kind of derogatory commentary about how “the sacroiliac joint doesn’t really move” and what a “sham” it is that people are trying to treat it.

I suppose the evidence for sacroiliac joint dysfunction is really a topic for another post, however to me it’s just another example of people trying to take pain science too far.

Ultimately, I believe these physical therapists’ anger stems from a good place.  From their perspective, they’re probably tired of seeing other medical professionals “waste” patients’ time by treating them for musculoskeletal causes of pain, when they should be focusing on the nervous system.

But really, there are two sides of the same coin.

Yes, pain originates in our brains.  And our brains can shut pain off, in emergency situations.  

But that doesn’t mean patients’ pain isn’t valid.  That doesn’t mean that, once you put them in a 3-hour class where they hear about extreme examples of people not experiencing pain, they should automatically be able to “turn off” their own pain.

No approach will work if you don’t listen to people.  No approach will work if you aren’t kind.  That’s really the bottom line.

Pain science should be used to educate– not to deny the other potential reasons someone could be experiencing pain.

Just as MRI’s aren’t always accurate indicators of who will have back pain, it doesn’t mean that someone in excruciating pain shouldn’t have an MRI.

All of these things represent aspects of the truth, but no one piece should ever be a substitute for looking at the whole picture.

P.S. Please don’t worry, there are plenty of ways to learn about pain science from people who actually do get it!  

For more, you can check out my Resources section.

I also highly recommend Todd Hargrove’s article Seven Things You Should Know About Pain Science.

 

My very first interview: The Capable Body Podcast!

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Hi everyone!

One of my goals for 2017, and continuing on into 2018, was to say “yes” to any opportunities that came my way to grow my blog.  So, when my friend Matt Villegas asked to interview me for The Capable Body Podcast, I said yes!

In this interview, I tell the story of how my eating disorder and overexercise led me to develop the injury that ended my running career (compartment syndrome) and to develop chronic pain.

I talk about how the nervous system can change in response to pain, and how this occurred within my body.  I also talk about the difficulties I faced in being taken seriously by doctors, PT’s, and other medical professionals, and how for a long time, my pain was misdiagnosed as a mental health condition.

And I explain much my life changed when I met a physical therapist who had studied pain neurophysiology education with Neil Pearson— what I learned from that time, and how it drives me to become the best physical therapist I can be now.

***

To be honest, it was a little bit scary trying to tell some of the most personal aspects of my story live in audio form.  After all, I’ve really only just barely gotten up the courage to write about some of this stuff, and even so, when I write about it I don’t always come right out and say the whole truth.

But I promised myself I was going to try new things, and I’m so glad I did it!

So here are a few links to the podcast– you can check it out in whatever format works best for you.

I’m reminding myself not to let perfect become the enemy of good.  

I still do wish my voice, and explanations, were a little more polished.  But, like many aspects of blogging, I find that doing something for the very first time is the hardest, and the next time will always be easier.  That’s why I went ahead with this, and why (gulp) I’m going to start sharing it with the people in my life!

If you want to check out more episodes of The Capable Body Podcast, you can visit its official website, or also join Matt’s Facebook group (it’s a closed group because it’s easier for Matt to manage that way, but anyone is welcome to join!).

Okay, that’s all for now!  Hope you enjoy the podcast!

The push & pull of when to keep going, and when to rest

Yesterday I was trying to drive home in rush hour traffic, along a route I wasn’t familiar with, and I ended up taking one wrong turn after another.

For those that know Boston, I was trying to get on Storrow Drive West, but somehow ended up going up Route 1 North, over the Tobin Bridge.

I took an exit and tried to turn around, only to find I kept making more wrong turns.  I thought I was going up a ramp to get back to Route 1, only to realize I was driving on something I wasn’t quite sure was a road.  (By the way, normally I’m a very good driver, it was just a weird area!).

And then, the next thing I know, I ended up in Chelsea, driving up this beautiful hill towards a residential area, and I look out and see this as my view:

Don’t worry, I pulled over to take these photos!

For some reason, it got me thinking of all the twists and turns in my journey.

All the times I’ve been mad at myself for trying too hard (like starving myself and running a billion miles a week cause I was afraid I was going to get fat).

And all the times when, looking back, I was afraid to try too hard and so gave up too soon.

***

Honestly, what I think now is that you just never know what lies ahead. And blaming yourself and giving up are, in a way, just our attempts to try to have control over a difficult situation.

The older I’ve gotten and the more I’ve learned, the more counter-productive I’ve seen that self-blame can be.

I‎t just isn’t useful; it doesn’t prove a point; it doesn’t get us any closer to the answers.

The truth is that there are answers I’ve found through hard work, and there are answers I only found because I happened to stumble upon them.

The one thing I wish I could really change, though, is all the times I held back because I was afraid of looking too hard. As if giving in and admitting I truly had a problem was the same as giving in to it, when actually that’s what it was going to take for me to overcome it.

Sometimes the right path will look like the wrong one, or the one that couldn’t possibly work (like me driving on a road I wasn’t quite sure was a road).

You just have to keep going and have enough faith in yourself to know that, ultimately, you’ll figure it out if something is or isn’t right for you.

***

Someone asked me the other day how I found my physical therapist Paula– the person who finally really helped me with the SI joint.

The answer is simple, but also complex.

Technically, I found her because I happened to do a Google search for “physical therapy sacroiliac joint” and the name of my hometown (where I was living at the time). The website for the practice she worked at popped up, with her online staff bio, where it listed the SI joint as one of clinical interests. Simple, right?

But there are so many more layers to this. Such as the fact that she’d been working there for over five years, and somehow never came up in any of my millions of Google searches. (I’m still not sure how this happened, if someone redesigned their website at just the right time, or what).

I’d looked and looked and thought I knew of everyone in our area, but somehow, I’d missed her.

***

I wasn’t going to look at all, actually.  I’d already seen FOUR other physical therapists, all of whom had either failed to help me, or made things worse.  I felt done.

It was my ex-boyfriend Tim who convinced me to look again.   He pointed out that maybe this was just what it took for me to find answers.  He got me to see that maybe four physical therapists wasn’t really that many.   Not if my entire life was on hold.

He told me about one of his friends, who, for years, suffered from constant sinus infections.  This friend saw multiple doctors who said there was nothing they could do, yet he refused to take no for an answer and kept seeking out other opinions.  Finally, he saw a specialist who told him that by luck of the draw, he’d been born with nasal passages that were too narrow.  This doctor was able to fix the problem with minor surgery.

So there are no hard and fast rules here. There’s no way to guarantee an easy answer.

The only guarantee is that if you waste time judging yourself, or being afraid to admit that you really have a problem, or assuming that no one will be able to help you… you’ll be more likely to push away your chances to find answers.

I finally found Paula through luck, probably because my search engine results changed.

But I also only found her because I had someone who cared about me to tell me I was judging myself and my situation too harshly; that I was jumping to conclusions about not being able to find help.

***

This started off as a post about finding answers, but in a way this post has turned into somewhat of a thank-you to Tim, as well.

So thank you, Tim. (We’re still friends and I’ll be sending him the link to this after I hit publish).

I hope you all are able to believe in yourselves and keep fighting.

And I hope you also, in one way or another, have a Tim.

Being okay with uncertainty

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When I first started this blog, I was angry.  I never wrote about it, because I didn’t want to bring people down, but I was sick and tired of trying to explain my health issues to the people in my life, and feeling like they didn’t believe me.

Maybe you can’t see the anger, because you aren’t me.  But when I look back and read my earlier posts, I see the it in between the lines, in the way I wrote.  How sure I wanted to be of things; how determined I was to prove that things were, in fact, the way I understood them to be.

The funny thing is that now that I’ve taken more and more science classes, my perspective has changed.  The more I know, the more there is I realize I don’t know.  And the more I’m actually okay with that.

***

For example, one of the things I’ve written about from time to time is how researchers are beginning to use brain imaging to study chronic pain, and even to develop new treatments for it.  This is, of course, super promising research, and I’m really excited about it.

However, one of the first posts I wrote about it, I’ve since had to significantly edit.  That original post was about how I hoped that, someday, doctors would be able to use brain imaging to “test” people for pain hypersensitivity, and prove that they had central sensitization.  This, I imagined, could be used to validate patients’ disability claims, or prove that they weren’t faking it.

The more and more classes I’ve taken– and I’ve had some really great professors, who went into the ethics of research– I’ve come to realize why using brain imaging as some sort of test wouldn’t be ethical.  The body is too complex; our testing too imperfect, to allow it to be used to potentially deny someone treatment.  People with legitimate pain could still fall through the cracks.  That’s why these brain scans should probably only be used for research and developing treatment.

That’s just one example of how my perspective has changed– knowing that we may never have a definitive way of proving who is in pain or not.  I’m more comfortable with uncertainty now, because I’ve learned so much more.

I have a much better sense of where we stand now with scientific research and where we are going.  I’ve also made a lot of changes in terms of the people I choose to have in my life.

So from where I stand now, the idea of not being able to “prove” myself is no longer one of my biggest fears.

***

Something I’m learning is that you can learn a lot about people by looking at what they choose to emphasize.

For example, I once had a roommate who’d been bullied for being overweight as a child.  Of course, as an adult, this person was obsessed with clothes and makeup, and never left the house, even to make a quick run to the store, without making sure she’d done her full beauty routine.

And maybe it was the same with me– in my anger, I needed to formulate some sort of certainty about central sensitization and chronic pain, because it gave me a sense of the stability that I was lacking.   Maybe that’s why the idea of a “test” appealed to me– it offered what I wished I could provide to the people in my own life: unequivocal proof.

***

Of course, I still believe in learning about central sensitization.  No question; that is what has most empowered me.  Knowing what the problem is, and naming it: to me, that’s the first step on the road to healing.

What I’m really remarking on is the paradox: the more I know, the more I am okay with what I don’t know.

I no longer need to prove anything, so not having all the answers doesn’t scare me anymore.

 

How I developed central sensitization: Part 5

For a few years, I was stuck: caught between all of the doctors I saw, who thought there was something wrong with me psychologically, and the fact that deep inside of me was a calm, inner voice that knew it just wasn’t true.

***

Feeling as though I’d run out of other options, I became really interested in alternative medicine.

I still wanted an explanation for my pain that had something to do with my physical body.

I wanted to be seen; I wanted to be heard: I wanted to be believed.  And the alternative medicine practitioners I saw were able to provide me with that validation.  They believed me– of course the traditional doctors hadn’t been able to solve my problem.

***

For a while, I went a little bit off the deep end.  I read just about every book I could find on energy healing.  I started taking turmeric capsules instead of Advil; I bought crystals.

I began to see traditional medicine as somewhat of a sham, propped up by the pharmaceutical companies.  And I thought anything that fell under the heading of “alternative” medicine had to be good.

***

I had a lot of reasons to reject the “establishment” view.  The establishment, after all, is what failed me.  I’d slipped through the cracks, so many times; the safety nets I’d counted on had turned out to have holes in them.  Of course, it made sense that what was “traditional” had failed me again.

***

Now, I don’t want to offend anyone by insulting or dismissing an approach that has been helpful for them.  But if I were to give you the complete list of everything I tried, well, just about every “alternative” treatment is on it.

However, the truth is that nothing I tried worked, and all of it cost me a lot of time and money.

Looking back, there were definitely times when I must have been “that crazy person,” insisting to people that they try this same new treatment I was doing, or that they consider the fact that their headaches or thyroid problem could be entirely caused by blocked energy flow in the body.

My views have changed a lot since then– the science classes I’ve taken have opened my eyes to just how much we really do know, using “regular” science.

But I still have a lot of empathy for the “crazy” people, because I was one.  I know how easy it is to believe a convincing claim from a caring person who probably genuinely thinks they’re going to to help you.  Especially if you don’t have much of a scientific background.

I used to believe some crazy shit I’d be really embarrassed to admit to you now.

That’s why, even though my perspective has changed, I don’t believe in shaming people, or embarrassing them, for trying to do something to heal themselves.  Everyone is on their own path… and some of our paths can get a bit convoluted.

***

I’m not trying to say that alternative medicine doesn’t help anyone.  I believe there are some treatments that are probably more legitimate than others (for example, acupuncture has been shown to have some pretty significant effects for pain relief, although evidence suggests it may be more due to the body releasing endorphins in response to a needle than anything else).

But at the end of the day, I was struggling from the effects of central sensitization, which none of these belief/treatment systems had any means of addressing.  There’s no way any of these treatments were going to help me, because even my original “diagnosis” was always wrong.

I felt better, emotionally, when I was given an explanation that had to do with my physical body… but ultimately, all of the treatments fell short.

After all, there was no way any school of thought was going to help me, if it didn’t even have a name for my problem.

To be continued in Part 6!

To read this series from the beginning: