When the going gets tough, the tough start researching…

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Hi everyone!

Today I wanted to share with you this post from my friend Clare over at Jelly-Like Joints.

Clare is a science-lover and “bookish crafter” –a book lover who also enjoys arts and crafts.   She was born with a genetic condition that affects her connective tissues.   This causes her to have hypermobile joints, along with chronic pain and other symptoms.

In her post, Clare writes about how she’s been struggling with some new symptoms lately, specifically in regards to her voice.  (Connective tissue disorders can cause a wide range of symptoms, because connective tissue can be found just about everywhere in your body).

I wanted to share her post with you because I really admired her mindset– it’s the approach I try to take as well, when I have setbacks.

Which is to take a step back and say, ok.  I have this new problem I wasn’t expecting.  But that also means there are new potential solutions out there I haven’t tried.

Of course, this is easier said than done.  And I admit, it is not always my immediate reaction.  But when I work through the anger and frustration, this is usually the point I get to that feels right, that lets me know I’m on the right path.

Keep going.  Don’t stop looking for answers.

So what I really admired about Clare’s post is how, not only is she mentioning things that could be helpful to her, she keeps trying to help others at the same time.

So… check out her post!

You may notice that she’s included a link to one of my blog posts ;) I also struggle with hypermobile joints, however mine are hypermobile for a different reason.  I am very fortunate not to have a connective tissue disorder…  I was just born with joints that don’t fit together in the most stable way, making them more prone to pain and potential injury.  (It just happens to some people, through luck of the genetic lottery).

I also really thought the part about the acupressure mat was interesting.  For those that don’t know, the term proprioception means a general awareness of where your body is in space, and the different stimuli affecting it.  Our sense of balance, for example, depends on different types of proprioceptive input through our nervous system.

Sometimes when we have a chronic illness, or injury, or chronic pain, our sense of proprioception to different parts of our body can be impeded, so an important part of therapy is to help the nervous system “remember” to check for different types of information.

That is something the acupressure mat could do, by giving TONS of information to our nervous system about what’s going on with your feet!  So I thought that was cool.

Anyway, I hope you’re doing well, and that you all head on over to check out Jelly-Like Joints!

The thing I was most embarrassed to write about

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Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.

However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.

I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.

I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.

But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone.  I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.

So, a big thank you to everyone who’s shared their story with me.  Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you.  It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.

In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.

 

While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.

I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.

But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.

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 story of my wrist, and the pot of boiling water (Finally, my own pain science metaphor!).

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Using metaphors to explain how pain works

One of the original reasons I started this blog was to get the word out about the various pain scientists and educators whose work has touched my life (including, but not limited to, Neil Pearson and Lorimer Moseley).

From them, I’ve learned that pain isn’t here to make us suffer (although it seems like it sometimes).  Ultimately, it’s here to keep us safe.

It’s a protective mechanism, and sometimes it can try a little too hard to keep us safe.  A sensitive nervous system is like an overactive alarm system, or an overprotective friend.

It can “zoom in” or “turn up the volume” on pain signals it thinks you need to pay more attention to.   This is what I call the “up” dial.

Your body can also turn down the volume on pain.

There may come a time when your nervous system decides it’s more important to “turn down the volume” on pain– or even block out pain signals completely.

Normally, this “down dial” isn’t something we are able to access consciously.  It’s something our body can do automatically, in times of great danger, if those pain signals are distracting us from getting out of a dangerous situation.

Neil Pearson, for example, tells the story of a patient he once treated who had been hit by a drunk driver on the way to work.  He woke up upside down in his burning car, and realized he had lost an arm in the accident.

The man managed to extricate himself from the car, collect his missing arm, and walk back up to the side of the highway all without feeling any pain.  This is because, in that moment, his body knew that feeling pain would take away from his chances of survival– the most important thing was his getting to safety.  Once he was safely in an ambulance in his way to the hospital, then the pain set in.

Your body has the ability to adjust the level of pain you perceive.

This is a survival mechanism that normally kicks in under emergency circumstances.

However, it is something we can also learn to do consciously with practice, using various techniques to tell our body to “turn down the volume” on pain.  That is the focus of pain neurophysiology education, the approach to pain management that changed my life.

My own metaphor

The really good news about this approach is that you don’t actually have to be a neuroscientist, or even have a huge scientific background, to learn how to do it.

Somehow, once you start to switch over from viewing pain as an enemy to a friend or a guardian, it can start to make an immediate difference in how you perceive it.

That’s why I’ve been so determined to spread the word about some of the metaphors that have helped me.  However, I’ve felt a bit limited in doing this, since I’m also interested in not plagiarizing other’s work.

So today at long last, I got my own metaphor. 

It’s not particularly wild or dramatic.  In fact, it’s pretty subtle (and also makes me not sound terribly coordinated).  However, I think it does a great job of explaining in a down-to-earth way exactly how the nervous system can choose to turn pain signals out, if it benefits your survival to do so.

It’s a small thing, really.  (And actually, it illustrates to you how absent-minded I can be at times, but that’s another matter!).

I was cooking dinner, boiling some ravioli.  They looked about done, and I was starving.  So, without really thinking, I lifted the pot off of the burner with one hand, and started taking it over to the sink to drain.

Halfway to the sink, I realized the pot was much heavier than I’d anticipated.  I realized I hadn’t really been paying attention, and it had been a mistake to pick it up.   Now I felt like my wrist was about to give out, and I was already halfway to the sink.

I quickly thought through my options.  I wanted to put it down instantly, but there wasn’t a clear space on the counter.  I wanted to put another hand up to steady the pot, but the handle was too small and I would have needed a potholder.

My wrist was really starting to hurt, and for a second I considered just dropping the pot altogether.

But no.  I had a vision of scalding water splashing everywhere, including on me, burning my skin.

And just like that– that very second– all the pain in my wrist disappeared.  Nope, my body said.  We are NOT dropping a pot of boiling water on ourselves today.  

My nervous system made an executive decision, in that instant, to block all the pain out.  Ultimately, the prospect of spilling boiling water all over myself was more of a threat to my survival than the pain in my wrist.

I was able to get the pot of water all the way over to the sink without incident.  About 30 seconds after I put it down, that’s when the pain came back.

Like Neil Pearson’s patient making it safely into an ambulance, my nervous system had blocked the pain out just long enough for me to safely put the pot of water down.  Once that was over, the pain came back, to remind me that indeed, I had put my wrist through something strenuous.

It’s been a few hours and my wrist is just a little bit sore.  I know it will go away– it wasn’t a permanent injury or anything.  I just strained it a little bit by trying to carry something it wasn’t strong enough for.  (This is a good reminder that I need to pay more attention in the kitchen, even if I am spaced out and hungry!).

But I wanted to share this with you because I think it provides a good example of how pain isn’t always a clear-cut indicator of what, exactly, is going on in our body. 

Instead, it represents our body’s “safety monitoring system,” warning us about potential threats to our survival, and making sure we choose the course of action that’s most likely to keep us safe.

Of course, if you have chronic pain day in and day out, it can be hard to see pain as a protective mechanism. 

I said it was a protective mechanism– I never said it always perfectly.

Sometimes in the case of chronic pain, the “up” dial can get stuck on.

That’s why, again, it is so important to know that your pain also has a “down” dial, and that, with practice, you can learn to access it.

I hope you found this post helpful!

For more on the metaphors which can help you understand pain, I recommend you check out my posts:

As well as:

That’s all for now!  

Any questions, leave a comment below or email me at sunlightinwinter12@gmail.com!