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.

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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!

What I really want you to know

I never know quite what to call the posts in which I share a video.

Every title I think of sounds either click-baity or boring.  Like for this one: “Mayo Clinic doctor explains central sensitization.”  “Awesome video on central sensitization,” etc. etc.

In this day and age… what do you call something that truly is a “must-watch?”  The term is so overused.

But I really, really want everyone to watch this.

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Have you ever held something in for so long that, when someone finally validates the way you feel, you end up crying?

That was kind of how it was for me, with this.  This video was so great it actually made me cry.

I know a lot about central sensitization, but, honestly, most of that is from my own research.  (You can check out the articles and researchers I cite in my Resources section, particularly under “Scientific Articles”).

Of course, I’m grateful to have access to these articles, and of course, to the scientists who wrote them.  (Not to mention the education that allows me to understand them– big shout out to my neuroscience professor!).

But when it comes to understanding central sensitization as a scientific concept, there have been many times when I’ve felt pretty alone.

Maybe I shouldn’t feel this way, because, largely, I’ve found the answers I need– my life is so much better since I discovered pain neurophysiology education and the work of Neil Pearson (thank you again, Neil!).

But what I’m talking about is the emotional aftermath of what I went through in all the years before; all the time I spent feeling misunderstood.  All the conflicts and arguments with friends and family over the “weird” symptoms no one could understand… I have sometimes felt very, very alone in trying to articulate exactly what’s happened to me.

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That’s a big part of why this video blew me out of the water.

Here, Dr. Christopher Sletten, who runs the Pain Rehabilitation Center at the Mayo Clinic in Florida, describes, in patient-friendly language, exactly how central sensitization can happen, and the myriad ways it can affect a person.

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On my blog, I talk mainly about pain.  That’s been my main symptom, and in some ways it’s the clearest and easiest to write about.

But central sensitization can cause all sorts of bodily sensations to become amplified.

As Dr. Sletten explains, it can make lights seem brighter, and sounds seem louder.  It can make you dizzy.  It can cause digestive upset.

It can really affect all of the sensory input that is meant to help you protect your body and guide you through the world.

And this, of course, will make you look crazy to those who don’t understand.  It can even make you look crazy to yourself.

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So I love, love, LOVED the part around the 7:20 mark where Dr. Sletten asks, “So how much of this is psychological?  NONE.”  Bam.

“The emotions are a symptom, not a cause.”  YES.

How I wish the people in my life had believed this, all the times I tried to explain it to them ten years ago.

I knew I wasn’t crazy; knew it wasn’t all “in my head.”  But I could never find the right words to convey my reality; to convince people who’d already made up their minds.

It doesn’t mean they didn’t care.  But there’s a difference between knowing you’re cared about, and feeling truly believed and understood.  There’s quite a big difference, actually, and it can hurt to never get that second part from the people you love.  To know they’re tolerating your “craziness,” instead of seeing you for who you really are.

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I wasn’t really planning on writing such a personal post today.  I seriously LOVE the science behind this stuff, so I was planning to take some notes on important concepts and get more into the nitty-gritty.

But I guess this is the part of my story that I needed to tell today.  More of the nitty gritty will have to come later on.

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The one sciencey thought I wanted to leave you with right now is that this video provides some great insight into how central sensitization can lead to what are called central sensitivity syndromes.

After all, it’s not just pain.  It’s never just any one thing.  It’s the fact that the sensory information that’s supposed to give your brain cues as to how to respond to your environment is coming in way too “loud.”

This can create all sorts of different symptoms and sensations in different people.  It can lead to chronic pain; some people call it fibromyalgia.  It can cause phantom limb pain; it can cause Complex Regional Pain Syndrome (CRPS).

It can cause lead to diagnoses whose names imply more of a specific focus: chronic pelvic pain.  Temporo-mandibular joint disorder.  Irritable bowel syndrome; other digestive issues.

But they all fall under this umbrella term: central sensitivity syndromes.   Despite having seemingly very different symptoms on the surface, all of these conditions can share a common cause, at the level of the nervous system.

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So that’s all for now.  I hope you get as much out of this video as I did.  (And if you do, I hope you spread it around– I seriously want everyone in the world to watch it!).

As always, if you have any thoughts or questions for me, you can leave a comment below or email me!

 

 

The piece that didn’t fit

When I was young, all I wanted was to fit in, to be perfect.  To do what adults expected of me.  I never had a single cavity, I never missed the school bus.   I was always teacher’s pet.

Then, when I hit adolescence, the reverse.  My depression; my eating disorder; I couldn’t function, couldn’t fit in to any kind of mold.  I missed school; my grades suffered.   A few teachers saw who I really was, but in general, I don’t think anyone would have considered me teacher’s pet.

I (mostly) came to terms with these issues…. right around the time my health issues began.  So, really, I have always had trouble fitting in to some kind of external mold; to meeting the expectations of those who’ve never known what it’s like to physically suffer.

Even as a patient, I have come up against the feeling that somehow, I am not meeting someone else’s expectations.  My once-favorite doctor once grew frustrated with me for still saying I was in so much pain, and told me she had patients with much worse problems than me, and basically told me not to come back to her office.

(I have been meaning to write more about this doctor, because it’s from reading copies of her office visit notes that I first came across the term “central sensitization.”  Yet she never actually said the phrase to me– instead, she was one of the people who told me there were psychological explanations for my pain, and kept telling me to go see a therapist.  It’s so strange–she knew the term, but didn’t seem to fully understand what it meant).

I had a similar experience when I was “lucky” enough to become a patient at a well-respected pain management clinic run by a major Boston hospital.  I ran into conflict, right off the bat, with the physical therapist who ran the exercise sessions, because she didn’t agree with my rational for wanting to do a warm-up before exercising.

This is something my high school running coaches– in fact, even my gym teachers, all through school– had always drilled into my head.  Do a warm-up, or you’re much more likely to get injured.  Yet here I was, at a place for the already-injured, having someone tell me that I was “causing problems,” simply for wanting to take care of my body.  (There wasn’t enough time for me to do a warm-up and get through all of my exercises… which I later came to understand that she probably needed me to do, in order to get reimbursed by my insurance company).

So basically, from the age of 14 on, I have been familiar with the feeling of not meeting other people’s expectations… of not even fitting into any kind of mold they can understand.

But you know what?  I’m okay with it.  Because it’s this constant feeling of not fitting in, of being forced to look outside of what’s conventional, that has driven me to discover new things.

How long would it have taken me to discover the term “central sensitization” on my own, if I hadn’t decided to take matters into my own hands and request copies of my records?  I have no idea.  I do know it never came up in any of my science classes, except for about a 5-second mention in one of my neuroscience lectures.  (And if I wasn’t already familiar with the term, I might have missed it).

I do believe that I will have the power to help people someday as a physical therapist, and I think my specialty, if you can call it that, will be to help the “hard cases.”  The people who couldn’t be easily helped, and who, like me, didn’t fit easily into some kind of mold.

And it’s my experiences of not fitting in, of being forced to look “outside of the box” for answers, that will allow me to empathize and help them the most.

…my seeming failures were really just weird-ass portals to something beautiful… all I had to do was give voice to the story.

I am including this amazing talk by the writer Lidia Yuknavitch above, because ever since I discovered it the other night, I haven’t been able to stop listening to it, and she really inspired me to get my thoughts down into this post.

In her talk, Lidia describes how the many “failures” in her life were actually just the beginning of something new… it just took her time to begin to see them that way.  And, she says, if she had given herself permission to “belong,” to believe in herself sooner, she might have been able to recognize them for what they were sooner.

She has so many great quotes– you really have to watch it for yourself– but here, I want to make sure I record:

There’s a myth in most cultures about following your dreams. It’s called the hero’s journey. But I prefer a different myth, that’s slightly to the side of that or underneath it. It’s called the misfit’s myth. And it goes like this: even at the moment of your failure, right then, you are beautiful. You don’t know it yet, but you have the ability to reinvent yourself endlessly. That’s your beauty.

If I could, I’d go back and I’d coach myself. I’d be exactly like those over-50-year-old women who helped me. I’d teach myself how to want things, how to stand up, how to ask for them. I’d say, “You! Yeah, you! You belong in the room, too.” The radiance falls on all of us, and we are nothing without each other.

That’s it, right there:

The radiance falls on all of us, and we are nothing without each other.

There is reason to hope.

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I saw a comment on Twitter today which really broke my heart, so I wanted to write this and make it clear:

If you are experiencing pain hypersensitivity (through central sensitization), there is every reason to hope.

If your nervous system has changed one way, it is possible to change it back.

It won’t be easy, and the way forward won’t always be obvious.  But you can do it.

If you are experiencing central sensitization (as the result of an injury, a trauma, or other extreme physical or emotional experience) you have become more sensitive to pain than you used to be.  Your body is using pain as a way to protect you, but it is treating you like you are made of glass.  It is trying to protect you from everything.

Scientists are still researching the myriad of ways in which this happens.  So far, they have identified multiple different mechanisms within the nervous system which can cause this extreme response to pain.

However, the good news is that we don’t need to know everything, yet, about how this process occurs to start treating it.  (Although our treatments will only get better in the future, with more knowledge).

But you can start, right now, by learning what your body is capable of, and identifying the things your nervous system is warning you about that aren’t actually dangerous.

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For me, it took a really smart and capable physical therapist who had studied with Neil Pearson.   I expect that you will need a guide as well– someone who you trust, who can walk you through and help identify the ways it is safe for you to try to push through the pain.

Your best bet will be a physical therapist who has advanced knowledge of recent pain science.  (A PT with this knowledge might not easy to find, at first, but luckily it’s becoming easier and easier.  If you email me at sunlightinwinter12@hotmail.com, I can help you get started).

What you need is someone you trust, who you will believe when they tell you your body is capable of more.

Someone who is able to think flexibly and come up with more than one way to do an exercise, if you tell them the first way they gave you doesn’t seem to work.

Someone who will understand that it’s not only about what they learned about the body in school…  it’s also about you, your nervous system, and your experience as a patient.  Your nervous system has to be convinced that your body is safe, before it’s going to stop making things hurt.

Changing your beliefs about pain can have a direct impact on the pain you ultimately experience.  When you truly learn and understand that your body is giving you pain in order to protect you, it stops being so threatening.  This is known as changing your pain from the top down— from the brain to the body.

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Of course– it’s equally important to keep working on your pain from the bottom up– from your body to the brain.   

If you have chronic pain, or have suffered from some type of injury, your muscles are probably tightened into protective spasms.  This, in turn, will make them weak, if it goes on for long enough.

So you have to work on the pain from both angles.  You need to calm your nervous system down, and help it understand that not everything is dangerous.  But you also need to give your body what it needs, and do everything that you can to help it function optimally.

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Doing both of these things is a balancing act.  Getting back in to shape is not about pushing through the pain.  It is not a “no pain, no gain” mentality.

Instead, it is about being mindful.  Being careful.  (And again, ideally, having a trusted coach by your side).

To respect your nervous system, and to accept your body where it is currently at.  Not trying to do too much, too soon, but instead starting where you can.  If you can only walk for 5 minutes, walk for 5 minutes.  If you need to ice your injured knee before you work out, ice your injured knee.

It’s about bringing all of these different things together, and figuring out what works for you.

 

A way of giving back (free photos!)

Some of the stuff I’ve been writing about on my blog has felt a little bit heavy recently, so I thought I’d just take a moment and share something I’ve been meaning to for a while:

When I first started blogging back in 2012, I had absolutely no idea what I was doing, or if anyone would want to read anything I wrote.

One of the things that really helped me was to search through Flickr and find Creative Commons-licensed photos to use.  (If you aren’t familiar with Creative Commons, it is a way for people to make their artistic work available for others to use under certain permissions).

Somehow, when I was writing my first fledgling posts, it would give me a little dose of courage to find that someone had just happened to make the perfect photo available to go with what I was trying to say.

These days, I take more of my own photos.  I find that nature, especially, inspires me to write so I’ve gotten in the habit of snapping shots of wherever I am that makes me want to write.  But there are definitely still times where I don’t personally have any photos that would be useful for a specific post, so I still sometimes go on Flickr to find the perfect image.

So, as a way of paying it forward, I’ve put many of my own photos up on Flickr under a Creative Commons license as well.

I definitely can’t claim to be the world’s most amazing photographer, but I do have a lot of photos that I put thought into, and that mean something to me.

So, if you see anything on there that is helpful for you, or might go well with something you are working on, you are welcome to use it (as long as it’s one of the ones I’ve posted with permission!  There are a select few that are too personal, like of friends’ pets and such.  So please check).

I hope some of these photos might be useful to you (or, at the very least, I’ve now given you a new idea about how to look for photos on Flickr!).

Happy blogging!