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.

 

Fighting a health issue without judgement, for the first time

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They say one of the worst things a blogger can do is to begin all your posts with an explanation of why it’s been so long since your last post.

Normally I’m able to stop myself from doing this, but I’m going to let myself do it this time, since it’s actually relevant to what I want to say.

The reason I haven’t been on here in so long is I had a crazy past few months dealing with the most insane dust and mold allergies.

I had been living in a super old 1700’s farmhouse that had not been well-maintained.  A good friend had been living there for years and needed a roommate, and the rent was super low.  So I moved in with him, following my return from California.

I had never really had significant allergies before, beyond suffering from pollen one or two weeks out of the year.

But this winter, it came out of nowhere.  I thought I was sick at first, and had to take antibiotics for a sinus infection, but even once that was treated, some of my symptoms never went away.

Thankfully, my primary care physician referred me to an allergist (even though I was convinced I wasn’t the kind of person who had allergies) and sure enough, I tested positive for dust and mold allergies.

By then, things had gotten so bad that I could barely sleep– I was so congested it was hard to breathe.  I’d wake up feeling like I couldn’t get enough air.  My sleep schedule got all messed up, and I started relying on things like Benadryl and Nyquil, which of course left me exhausted the next day.  And during the day, dealing with my symptoms felt like a full-time job.

In the midst of all this, I realized I had to find a new place to live– a pretty intense and financially-involved decision to make when you know you’re not in your right mind.

Somehow it worked out.  It took another month, but I finally ended up moving, and am gradually doing better (my allergy doctor said it might take a few weeks).

I’m a little upset at how much time I lost on this problem– really, I wasn’t able to be productive for much of the winter, until things finally came to a head in March.

However, if I look back, I can see that some good came out of this, in a way.

This was really the first time I experienced a health issue and pursued treatment on it without stopping to judge myself, or the way I was handling it.

***

I mentioned in a previous post that, in the past few years, I came to realize that many of the same issues that contributed to my eating disorder were also affecting the way I handled my health issues.

Specifically, in an unconscious way, I was afraid to devote too much time or effort to “fixing” something with my body, because I was afraid it would trigger the same obsession that caused me to starve myself while running 40+ miles a week, until I eventually developed compartment syndrome.

With issues such as my chronic pain, and then my SI joint issues, I only tried to fix the problem to a certain extent.  I’d go see a specialist, I’d go to PT, I’d do my exercises.  But then I wanted to stop, be a normal girl, focus on other things.

I finally identified this pattern 5 years into my SI joint problem.  I realized, you know what, this problem has completely taken over my life anyway.  It doesn’t really make sense to try to “limit” the time I spend trying to fix it, because things are so limited for me right now anyway.

So I gave myself permission to do whatever it took, and started my SI joint blog as a way to keep track of the things I researched.  And it was during my research for this blog that I first came across another patient saying constant chiropractor adjustments made her worse.  That planted the seed in my mind, and I ultimately came to realize that the same was true for me as well.

With my allergy stuff… I got right to it.  I scheduled an allergy test, and when the first office of the sprawling medical practice couldn’t fit me in for over 6 weeks, I called around until I found an opening in 2 weeks.  I made all the lifestyle changes my doctor recommended, and then some.  And then I moved.

Of course, it was a little easier to proceed without judgement from others in the context of allergies.  After all, we don’t suspect people of “making up” allergies for some kind of gain. You can’t get workers comp for it, and there aren’t any super fun drugs.

But even so, I felt that the biggest difference this time around was in my mind.

I had it in my head that I was a “normal” person, experiencing a problem, and I did what it took to get better.  I didn’t waste time on “whys” or “what ifs.”  I didn’t ask if I deserved to get better, or worry about what the doctors might think of me.  I simply had a problem, and I did what it took to find a solution.

When I first started having chronic pain at nineteen, I thought I deserved it…  I’d starved and abused my body, even though I should have known better, and that the pain and the compartment syndrome and maybe even my SI joint problems were the price I had to pay.

Now, at age 32, I never felt that way about my allergies on any level… I just saw them as a crazy fluke of biology, a random stroke of unfortunate genetic luck that was completely not my fault.

So… it’s interesting to feel this way.

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Does anyone out there know what I mean?

Have you ever come to realize that your own negative beliefs and fears about yourself were affecting the way you pursued treatment?

Don’t let them.  Believe in yourself– believe that you are normal, and that answers are out there.  Because they are.

The way I wish I could write: Natalie Breuer, “On Depression”

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I haven’t written much yet on my struggles with depression in my teens/early 20’s. Those are perhaps my most real memories.  They made me who I am; they prepared me for what came next.  (After all, if I could make it through some of those dark times, I could definitely make it through physical pain).

Those memories are, of course, the hardest to write about publicly.

That is why I’ve been so struck by this amazing post from Natalie Breuer at Natalie’s Lovely Blog.  Ever since I first read it last month, I just can’t get it out of my mind.

I was just so struck by the way Natalie put her experiences into words.  Of course, my story is different than hers, but I noticed a lot of parallels and her writing really just took my breath away.

Because I love good writing, and am trying to become a better writer, I’m making it a goal for 2017 to really pay attention when people use language well.

So here are two excerpts from Natalie’s post which I really loved, and want to remember:

When things got really bad, I attempted to detach myself from reality. I hardly spoke to anybody, and when I did, my words were heavy and cruel. I drove spaces between myself and the people who cared about me and felt no remorse as I did. I grew my hair until it reached my hips, I stopped wearing shoes, and I scrubbed my hands nine, ten times a day. Somehow, they felt unclean no matter what I did. I only took cold showers, and I ran every morning until the only thing I felt was the ache of my body and a heartbeat in my left ear. I figured the more worn out I was, the easier it would be to sleep again.

And yet the most important thing I’ve learned over the past couple of years is that it is possible to love a place or a person, but also know that they aren’t the right fit in any sort of permanent way. I have also learned that it is possible to know a lot of different things about a person but nothing about what they are actually like. I do not know if I will ever get used to it — having to quietly get rid of someone, having to leave some place — but I do know that it is the only thing I can do to help myself sometimes. It is the most difficult and important thing to understand that just because you need something to end in order to move on, doesn’t mean it wasn’t once the most significant, beautiful part of your life.

I feel like I could say more here, but honestly, those quotes are really all you need.

I hope you will check out the rest of Natalie’s post, and her blog in general!

“Science-based” vs. “evidenced-based” medicine

Over the years, I’ve seen the words “evidence-based” used to justify a lot of concepts I find dubious.  (Trust me– I saw some pretty ridiculous things during the time I worked in a mental health group home).

This article from Paul Ingraham at PainScience.com in favor of moving from evidence-based to science-based medicine was music to my ears.  I realized that, although I hadn’t consciously thought of it in those terms, advocating for that shift has been one of my motivations for working on this blog.

A lot of the treatments for fibromyalgia sufferers might be “evidenced-based,” but that doesn’t mean they shed any real light onto its causes.  For example, an “evidenced-based” course of treatment for someone with chronic pain or fibromyalgia might be cognitive-behavioral therapy.  It’s true that multiple studies have shown CBT to be helpful for patients with these conditions.

However, I don’t believe it’s reasonable to infer that because CBT has been shown to benefit fibromyalgia patients, those patients must have had an underlying psychological problem in the first place which contributed to their fibromyalgia.

To me, that’s confounding variables.

It makes perfect sense that someone with chronic health problems is going to appreciate having a sympathetic person sit with them, listen to them, and teach them new coping strategies.  However, this does not mean that fibromyalgia or related conditions are caused by depression or anxiety.  It simply means that therapy helps patients feel better.

***

What I try to do on this blog is to present the scientific evidence in favor of what I’m arguing.  That’s why I am always linking to academic articles.  Even though I know people don’t always have time to read them, it’s important to me that the citation is there.

It blows my mind that there are still practicing medical professionals out there who are unaware of all the research that has been done on the complexities of the nervous system, and how people experience pain.  In my opinion, the research that has been done on the process of central sensitization is a lot more convincing than the research that has been done on the overlap between mental health conditions such as depression and anxiety and fibromyalgia.

For one thing, it makes sense that you’re going to find a higher rate of depression and anxiety among the chronically ill.  I don’t know why anyone is surprised by this. To me, it makes perfect sense that those suffering in chronic pain and discomfort would experience an impact on their mental health.  It’s a chicken and the egg problem, and I find those studies relatively meaningless.

For another, the people who write these studies apparently don’t know anything about the process of central sensitization.  They appear to be completely unaware of the ways our nervous systems can physically change in response to chronic pain, in a way that is beyond our control.  Physical abnormalities have been found not only within the brain but within the spinal cord of chronic pain sufferers.

To say that depression and anxiety are responsible for chronic pain is to focus on only the tip of the iceberg.  If the people who published these studies would at least acknowledge the rest of the iceberg, I would be able to take them more seriously.

But it seems that academic knowledge is too compartmentalized.  Some people go into psychology and study people’s moods and thoughts.  Some people go into neurology and study the nervous system.  Even the people within neurology end up specializing.

This is why I am inspired to see people beginning to criticize the concept of “evidenced-based.”  I’m tired of people throwing those words around as though it means what they are doing is automatically great.  There is a difference between evidenced-based and science-based.   When you can see physical abnormalities in the brain of a chronic pain sufferer under a fMRI, that is science.   Assuming that people with fibromyalgia must have a problem with depression because psychotherapy makes them feel temporarily better is not. 

Anyway, that was a bit of a rant (but I’ve been told my rant-y posts are some of my best!).

Do you agree with me? Disagree? Let me know your thoughts!