The doctor who *almost* helped me (How I developed central sensitization, Part 6)

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Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong.  It’s not really necessary to the story, and I don’t want you to get bogged down in negativity.  The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist.  Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else.  Their approach is generally thought to be more holistic.  They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well.  It’s a pretty cool specialty.

And I was pretty much seeing the best one.  I loved Dr. V. the first time I saw her.  She’d won all kinds of awards for going above and beyond to help her patients.  And she was just so… nice.  She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.”  My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long.  I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed.  I just needed a place to go where someone could tell me whether or not I had an injury or not.  I didn’t always need to be referred to physical therapy, or start some new treatment.  Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it.  (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy.  She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years.  I would go and see them, but nothing ever really “clicked.”  Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain.  As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive.  It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured.  This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself.  A new part of my body would hurt (or an old one would start hurting again) and it would feel real.  It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V.  To be examined by an actual doctor and be told nothing was wrong.  It helped my nervous system feel “safe” again.  Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended.  Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my bod.  The pain would be able to fade into the background.

And I was okay with this pattern.  It wasn’t ideal, but it was better than anything I’d found yet.  We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing.  I was okay with the holding pattern, but Dr. V. was not.  Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes.  And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment.  I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed.  Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day.  That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me.  And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that.  I started to cry and attempted to explain myself, but it didn’t matter.  Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment.   Her secretary, who I’d sort of become friends, with overheard the whole thing and took my side, poking her head into the room and gently reminding Dr. V. that my appointment was actually supposed to be an hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference.  It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels.  This is why I like to remind people that central sensitization was actually discovered in rats.  It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist.  A lot of people are like that, actually.  They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her.  I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses.  It was #1: central sensitization.

That whole time– she could have just told me the name for it.  I didn’t even know there was one.  I could have learned about it myself– I could have Googled it.  It was discovered in 1983.  There was more information out there than I was given.

But no.  Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking.  I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what?  I think I’m sort of proud of myself for getting as far as I did, on my own.  After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson.  This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works.  It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!

Hope this was helpful!

Learning about central sensitization: the power of naming, and the future of pain treatment

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Whew.

I have really enjoyed writing my more personal posts recently– I love to tell a good story, and to feel as though my past experiences have some meaning.  (And I’ve really appreciated all your kind words, comments, and shares!).

But also, wow– some of those posts were very emotional for me.  Right now I’m kind of feeling the need to come up for some air.

So let me back up for just for a minute, and talk about some of the things I’m optimistic about, in terms of the big picture in treating chronic pain.

The more we know about central sensitization and the way pain works:

It gives us the power to name things.  

This is something I’ve been thinking a lot about recently.  Sometimes, there is a healing power that comes just from being able to put a name to something; to receive a diagnosis, and know that you aren’t the only one.

As I explained in my last post, when I finally learned the term central sensitization, it helped me to feel validated, and so much less alone.

Sometimes healing can come not from completely “fixing” your condition, but from being able to make meaning out of it for yourself; constructing a coherent narrative that makes sense.

And of course, it’s much easier to make sense out of something when you actually know what it is.

Having an actual diagnosis can help us explain ourselves to others

At least, I assume it does.

As I have mentioned in past posts, the truth is that I have often struggled to articulate what’s happened to me in the people in my life.

Of course, it didn’t help that I didn’t really have an explanation that made sense for it myself, for most of the time, or that even now that I have an explanation, it’s a condition that’s still fairly unknown.

This is why I am doing my best to raise awareness and get the word out.

The more we, as a society, understand about pain, the more treatments we can develop.

There is just so much to say here.  The more I learn about pain, the more and more I realize I don’t know.  It’s really such a fascinating subject.  I try to talk about some of the highlights on my blog, just to give you a sense of how broad the subject really is.

But in a nutshell, our growing scientific understanding of pain can lead us to all sorts of new treatments, such as:

New pharmacological approaches: I’ve recently discovered Gracie Gean’s Youtube channel, and her story about receiving ketamine infusions to treat CRPS.  I totally recommend checking it out!

Brain imaging and biofeedback: I’ve written before about the work of Christopher deCharms and others at Stanford University, who use functional MRI to teach patients to mentally “turn the volume down” on their pain.

Pain neurophysiology education

And of course, once you understand that pain is one of your body’s protective responses– it’s actually there to keep you safe, not make you miserable– this can help you learn to work with it, not against it.

This is the premise of pain neurophysiology education, which I talk about in the “Calming Your Nervous System” section of my blog.

When I was in the midst of my struggle, I happened to find a physical therapist who had taken a PNE course with Neil Pearson, and that was the moment things really changed for me.

I learned to view my pain not as an automatic indicator that something was wrong or broken in my body, but as my body’s attempts to protect me.  And, each time something hurt, it was possible my body was overreacting, like a jumpy alarm system, or an overprotective friend.

This helped me to mentally take a step back when things began to hurt, and re-evaluate what I intellectually thought the pain was likely to mean.  And even just realizing that I had the ability to do this– that pain didn’t always have to mean something was wrong– helped me to begin to end the cycle I’d been caught in.

So, that’s all for now.

I’ve got a bunch of posts planned for the next few weeks that I’m really excited about.

I’ve also recorded a podcast interview with Matthew Villegas for The Capable Body Podcast about my experience with pain neurophysiology education.  Although I was afraid I sounded super awkward, Matt assures me the episode will be good!  It should be coming out sometime in September– I’ll be sure to let you know when it does.

Stay tuned!

 

 

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.

***

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.

***

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.

***

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.

***

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.

***

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.

***

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.

***

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!

 

 

How I developed central sensitization, Part 4

I began to wonder if something about the compartment syndrome and the leg surgery could have changed something in my chemical makeup, weakening my body and depleting its healing response.

After all, pain was supposed to be my body’s way of telling me that I was injured.  Something was broken; something was wrong.

Time and time again, I’d go to see a doctor, and they wouldn’t be able to find anything wrong.  My elbow was fine; my wrists were fine.  One of my shoulder muscles had a knot the size of a pea, but according to the pain specialist I saw, it  “shouldn’t be causing this much pain.”

It was honestly so, so frustrating.  I really started to think there was something wrong with me that doctors just couldn’t find.  Something wrong in my tissues; maybe some kind of problem with inflammation.

***

My primary care doctor back home started to think there was something wrong with me psychologically; that maybe this was depression, or anxiety.

But her suggestions just didn’t resonate with me.  I’d been depressed before.  I knew what it felt like, and this wasn’t it.  As much physical pain as I was in, I was still in so much less pain, emotionally, than I’d been in as a teenager.

After all, I’d been through a time when it felt like daggers just to breathe; when I was so exhausted from trying to make it through the day that the walk from my parents’ driveway into the house seemed so far I might not make it, and I had to rest in my car.

I’d been through all that, and it hadn’t resulted in physical pain like this.  In fact, my body had been at its peak, running faster and faster.

Now I’d come out of all of that– the clouds had finally lifted, and for the first time, I felt like knew what I wanted out of life.  I was enjoying my classes, and the fact that I was meeting so many like-minded people.  I felt like we were all going to graduate and change the world together.  Finally knew what it felt like to be happy, when before it had been just a word.

How could depression be causing this debilitating pain now, when it never had before?   Apart from the pain itself, I was actually happy with my life now.  It didn’t make any sense.

To be continued in Part 5.

To start from the beginning of this series:

 

Christopher deCharms: A look inside the brain in real time

I’ve been writing about some heavy stuff recently, so I thought it would be a good time to share something that makes me feel really hopeful:

Christopher deCharms is a neuroscientist and entrepreneur who, along with other prominent researchers such as Dr. Sean Mackey, is paving the way towards using brain imaging to study and treat chronic pain.

deCharms founded a company, Omneuron, which has developed something called rtfMRI, or “real-time functional MRI.” 

In studies of chronic pain patients, this new technology allows researchers to see exactly which area’s of a patient’s brain are the most active, and how this activity can change from moment to moment, depending on what the patient is instructed to do.

We know that the brains and nervous systems of chronic pain sufferers function differently from people who aren’t in pain– now this technology allows us to see how.

deCharms explains,

There have (historically) been three ways to try to impact the brain: the therapist’s couch, pills and the knife. This is a fourth alternative that you are soon going to have.

We all know that as we form thoughts, they form deep channels in our minds and in our brains. Chronic pain is an example. If you burn yourself, you pull your hand away. But if you’re still in pain in six months’ or six years’ time, it’s because these circuits are producing pain that’s no longer helping you.

If we can look at the activation in the brain that’s producing the pain, we can form 3D models and watch in real time the brain process information, and then we can select the areas that produce the pain.

Just as there are parts of the brain which can produce the experience of pain, there are also parts of the brain which can “turn down the volume” on pain, so to speak.

There are a few mechanisms by which the brain can inhibit pain signals.  One powerful way is through the production of our own endogenous opiates– chemicals which our own brain produces to block pain.  (These chemicals are what opiate medications such as Percoset and Oxycontin are trying to mimic).

Omneuron is researching ways which patients can learn to “turn up the volume” on the parts of their brain which inhibit the sending of pain signals.

As deCharms explains in this additional interview:

There is a built-in dial in the brain, that, when you turn it up… pain goes away.  So we hope that when we can teach people to control these systems, to control this dial in the brain, they can make the brain go down.

He explains that many of his patients report feeling empowered simply by seeing images of the pain activity in their brains on the screen.  For so long, they had felt as though the people in their lives didn’t believe them about how much pain they were in, and there, on the screen, was proof.

***

I really find this topic to be so fascinating, not to mention inspiring.

If you’d like to know more, I actually have a whole section within my “Resources” page on how fMRI is being used to study and treat chronic pain.  (I have links to a bunch more articles, as well as some interesting talks by other prominent researchers).

Hope you’ll check it out!

Neil Pearson on the benefits of acute stress

I recently discovered this super thought-provoking article article from Neil Pearson on the positive effects of acute stress on the body.

We normally think of stress in as the chronic, ongoing stress that continues for weeks on end, taking a toll on our body in the process.  However, there are ways in which acute stress– that is, stress that only occurs during a short period of time, and then comes to an end– can actually benefit our bodies.

Neil writes,

If you want to make a muscle stronger, use it more.  If you want to grow more tolerant of an irritating or bothersome sensation or experience, step up to it.  Face it.  In time, it will bother you less.

Try playing a string instrument for the first time, and feel the intense pain from pushing down strings with your fingertips.  Keep doing it and your body will adapt, even creating a callous as a protective response, just like woodworkers and carpenters have on their hands and dancers have on their feet.  In other words, when you stress your body, typically it responds by being better able to tolerate that stress next time.

We are built to survive.  If there’s anything I learned in my health and science classes, it’s that our bodies are built to adapt specifically in response to the stresses we experience. If we continually perform a certain movement, the muscles that perform that movement will become stronger and better suited to the task.

If we perform a new task repeatedly, we will get better at it, until it becomes second nature.  Our nervous systems will change, and our mental map of this task will become more developed.

Our bodies crave the kind of challenge that we can rise to.  As Neil says, “acute stress is adaptive. This makes sense. When we exercise – challenging our physical abilities – we are not just improving our bodies physically; we are also making changes in our nervous systems.”

So.  How can people with chronic pain and health issues use acute stress to our advantage?

Neil suggests that we harness our body’s ability to grow and change in ways that can benefit us.  By teaching our bodies to do new things, we can give our nervous systems something to process other than pain, and try to jump-start that healthy, adaptive response.

If pain has been preventing you from exercising, Neil suggests:

Create acute stress while limiting the chronic stress of a flare-up: Make a daily plan to try an activity (or part of an activity) you want to do, but do it while you do your very best to keep your breathing even, your body tension low (only use as much as you need for the activity), and your stress level as low as possible.

So basically: we stress our bodies– our nervous systems, in particular, but also our muscles– in new ways.  But we make sure we are in the right place, mentally and physiologically, while we do it, by proactively taking steps to keep our nervous systems from going into fight or flight mode.

There’s even more in Neil’s article.  He talks about some of the positive effects of stress and exercise on the brain– how chronic pain can dim these effects, but how the techniques he suggest might present a way around that.  Definitely check it out!

***

All this talk about the positive aspects of stress reminds me of health psychologist Kelly McGonigal’s excellent TED talk on “How to Make Stress Your Friend.”  I’ve posted about it on my blog before, because it’s just really so great.

In this talk, McGonigal explains more about how stress can actually be a healthy motivator, seeking us to reach out to others and form social supports, and also spurring us on to create meaning in our lives.  She also suggests that when we learn to view stress as a potentially positive factor, it can actually limit some of the negative effects we normally assume stress will have on us.

There’s so much more to say, but for now, I think I’ll let you check these two resources out!  Happy reading/Youtubing– let me know what you think!

 

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.

***

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.

***

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.

***

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.

 

Todd Hargrove: Seven Things You Should Know About about Pain Science

As I’ve mentioned recently, two things make me really happy, which I plan to focus on more in my blogging in 2017:

  1. Great explanations of pain and the nervous system
  2. Amazing writing and creative use of language

Well, this fantastic article on pain science by Todd Hargrove at Better Movement has both, so of course it had to be my next post.

This is one of those moments where I would just blatantly copy and post the whole article if I could, because it’s that good.  However, in the interest of avoiding copyright infringement, I’m not going to do that, and will instead highlight some of the quotes that really resonated with me.

Basically, the term “pain science” reflects an understanding of the concept that pain is more complicated than our body relaying us a simple message about something being wrong.

That brings us to our first quote:

Pain is defined as an unpleasant subjective experience whose purpose is to motivate you to do something, usually to protect body parts that the brain thinks (rightly or wrongly) are damaged. If you feel pain, it means that your brain thinks the body is under threat, and that something has to be done about it.

The key phrase here is “rightly or wrongly.”  Your brain will cause you to feel pain if it thinks some part of you is in danger.  And the brain is not always right about this– it’s not that simple.

Pain is created by the brain, not passively perceived by the brain as a preformed sensation that arrives from the body.

When a body part is damaged, nerve endings are triggered and send warning signals to the brain. But no pain is felt until the brain interprets this information and decides that pain would be helpful in some way – for example to encourage protective behaviors to minimize further damage and allow time for healing.

Pain is not a simple game of “telephone,” where your nerves send a direct message to your brain about what’s happening in your body.  Pain is something your brain chooses to have you experience, in order to motivate you to do something about it.

This is why there have been documented cases of people who were experiencing extreme injuries or states of physical trauma, yet felt no pain.  When I took my neuroscience course, my professor told us that this phenomenon was reported somewhat widely during World War I, where were soldiers who lost entire limbs in battle and yet felt no pain.  This is because, at the deepest level, their brains understood that they were now going home to safety, away from the battlefield.  In the grand scheme of things, the injury could actually be saving their lives.  That is why their brains did not need to make it more painful– they were already heading home to safety.

Pain is like learning

I have discussed central sensitization before– the unfortunate truth that the more chances the nervous system gets to “practice” sending pain signals, the better it becomes at doing it.

Well, here is another way of explaining things that I absolutely loved:

One unfortunate aspect of pain physiology is that the longer pain goes on, the easier it becomes to feel the pain.  This is a consequence of a very basic neural process called long-term potentiation, which basically means that the more times the brain uses a certain neural pathway, the easier it becomes to activate that pathway again.

It’s like carving a groove through the snow while skiing down a mountain – the more times the same path is traveled the easier it is to fall into that same groove.  This is the same process by which we learn habits or develop skills.  In the context of pain, it means that the more times we feel a certain pain, the less stimulus is required to trigger the pain.

I love this metaphor about carving a groove through the snow.  The more times you go over the same thought pattern in the brain, the more firmly you establish it.  This is true for learning a new skill, and it’s true for sending pain signals.

And again, it’s important to remember– this sensitization does initially serve a purpose:

Most of the time an injury will increase the level of sensitization, presumably so that the brain can more easily protect an area that is now known to be damaged. When an area becomes sensitized, we can expect that pain will be felt sooner and more strongly (so that we do not reinjure it).

There are many complicated mechanisms by which the level of sensitivity is increased or decreased…For our purposes, the key point is that the CNS is constantly adjusting the level of volume on the pain signals depending on a variety of factors. For whatever reason, it appears that in many individuals with chronic pain, the volume has simply been turned up too loud and left on for too long.

Basically, our bodies cause us to become extra sensitive to pain following an injury so that we rest the area.  (After all, as my neuroscience professor liked to ask, if you were a cave person with a broken foot, what good would it do you to go out and try to do battle with a saber-toothed tiger?  You’d get eaten.  Better to rest).

However, the problem with central sensitization is that, sometimes, our bodies don’t know how or when to stop– “the volume has simply been turned up too loud and left on for too long.”

The good thing about pain science is, of course, that it provides us with some really interesting entry points to try to break in to these complex pain problems and develop ways to treat them.  (I don’t know why I’m saying “us.”  I’m not part of the “us” yet.   But I so want to be).

So… not to worry.  Just because your nervous system has become sensitized and ended up one way, that doesn’t mean it isn’t possible to change it back.  (And that, my friends, is the main reason for my blog).

Further Reading

If you’d like to read more about pain science, well… I have so many things I think you should read!  But here is what is probably a more manageable list:

Anything and everything by Neil Pearson

Lorimer Moseley & Body in Mind

The nervous system and chronic pain

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

What is pain neurophysiology education?

My new and updated “Resources” section!  I have been working on polishing it up recently, so you may find a few cool new things in there that weren’t there the last time you looked.

That’s all for now– please let me know if you have any questions!   Happy reading!

What is pain neurophysiology education?

In a nutshell, pain neurophysiology education is the type of treatment for chronic pain that changed my life and inspired me to become a physical therapist.

I’ve mentioned it in passing on this blog, but I decided it’s high time I give the topic its own post.

***

In my series “How a physical therapist helped me through my lowest point,” you can read the story of how my life had ground to a halt because of chronic pain, until I finally met Tim, a physical therapist who had studied with Neil Pearson.

Tim treated my pain in an entirely different manner than all the physical therapists and doctors I’d seen previously.

He explained to me that after all my body had been through– running 45 miles a week, only to develop compartment syndrome and barely be able to stand, to live like that for two years, and then to undergo surgery– my nervous system had gotten confused.

All the pain doctors hadn’t been able to explain– it wasn’t because I was crazy.

In fact, the reason I was feeling all this pain was because my body was trying to protect me.

My nervous system had decided the world was a dangerous place.  It was tired of me taking chances– it didn’t want to have to deal with another injury.  So it was making everything hurt.  It was making me feel as though I were made of glass.

But I wasn’t made of glass, Tim assured me.  My body was strong; it was capable.  And this attempt on the part of my nervous system to protect me had over-served its purpose.

Tim explained that the surgery I’d had for compartment syndrome had been successful, and despite how much my legs might hurt at times, I wasn’t going to be able to bring it back just by walking down the street.

***

The pain neurophysiology approach worked when nothing else had, because it gave me a real explanation for the pain that actually made sense.

Before that, all the physical therapists I’d seen (and I’d seen a lot) had taken one of two approaches:

A) You have some underlying soft tissue problem or scar tissue or whatnot that we have to fix with a special treatment, or

B) I can’t really find anything wrong with you, so the pain must be in your head and you should probably see a psychologist.

Neither of these approaches ever made a difference for me.  The “special treatments” for the hidden, subtle issues in approach A never fixed anything or reduced my pain (except temporarily, because I felt like I was doing something).  And approach B never fixed anything, because ultimately these problems were not reflective of my overall mental health.

Instead, I learned, my pain was the result of a specific phenomenon that occurs within the nervous system: central sensitization.  Basically, the underlying principle here is that the more practice the nervous system gets at sending signals, the better it will get at sending those signals.  And that is true of pain signals, along with everything else.

***

Tim didn’t really use the words “pain neurophysiology education” while I was seeing him for treatment.  Instead, I first found this phrase while I was looking through Neil Pearson‘s website, as Tim had urged me to do.

From there, I discovered the names of other physical therapists and researchers who had contributed to developing pain neurophysiology education, or PNE as I’ll be referring to it in the future.

Names such as David Butler of the Neuro Orthopedic Institute, and Lorimer Moseley of the research group Body in Mind.

From there I have discovered so many interesting resources, and articles, and interesting people doing work on the subject.

***

For 2017, I’m trying to get back to my roots on this blog.  I started blogging to educate people on the science of chronic pain, and I really enjoy doing that.  So I’m planning to start channeling more energy towards that again.

So I’m going to start fleshing out this section of the blog again.  I’ll be providing a lot more explanations, linking to great resources, and also quoting excerpts from articles that I think explain things really well.

And I’ll be telling my own story, when it comes to my struggle to understand my body, and learning to deal with central sensitization.

***

For now, I want to leave you with two posts I wrote on some of the main concepts I learned through my experience with PNE:

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

These posts tie in a couple of anecdotes from Neil Pearson and Lorimer Moseley that I found particularly helpful.  (Let me say, once again, that I am so, so grateful for their work!).

***

I hope you find this post, and the related articles I linked to, to be helpful!  I’m really excited about the things I plan to write about in the future, and I hope you stay tuned!

The best TED talk ever: Elliot Krane on the Mystery of Chronic pain

Tonight I’m throwing it back to this amazing 2011 lecture on chronic pain given by Dr. Elliot Krane of Stanford University.

I found his talk around the time I was first starting this blog, back in 2012, and it really inspired me to try to tell my own story with complex pain problems.

Dr. Krane is a pediatrician and an anesthesiologist.  He specializes in treating children with chronic pain disorders at the Lucile Packard Children’s Hospital at Stanford University.

In this talk, Dr. Krane outlines the case of a young girl who developed CRPS following a wrist sprain, and was successfully treated at his hospital.

He has some really great quotes and soundbites about chronic pain– things I want to remember, and things I think will be useful in trying to explain the multi-layered nature of pain to people who don’t quite get it (yet).

So here, I’m just going to take a few notes so I (and you, if you’re interested) can come back and remember some key points really quickly:

***

Most of the time, we think of pain as a symptom of a disease– the result of an infection or a tumor, an inflammation or an operation.  But about 10% of the time, after a patient recovers from one of those events, the pain persists for months or even years.  In those cases, pain can become its own disease.

Chronic pain is “a positive feedback loop…. It’s almost as if somebody came into your home and rewired yours walls so that the next time you turned on the light switch, the toilet flushed three doors down, or your dishwasher went on, or your computer monitor turned off.  It sounds crazy, but that’s what happens with chronic pain.”

Glial cells (a particular type of cell found in the nervous system) were once thought to be unimportant.  When I learned about them in my PT prerequisite classes, we thought of them as the supportive “glue” that provides a safe environment for neurons, the more interesting cells that were actually responsible for sending messages.

But, Dr. Krane explains, it turns out that glial cells can play a vital role in the “modulation, amplification and, in the case of pain, the distortion of sensory experiences.”  Once glial cells are triggered by chronic pain, they become overactive and help initiate that the positive feedback loop he mentioned.

Some other quotes:

“The nervous system has plasticity.  It changes, and it morphs in response to stimuli.”

On treatment:

“We treat these patients in a rather crude fashion at this point in time. ”

Dr. Krane describes the treatment protocol for CRPS patients at his center:

  • symptom modifying drugs (painkillers) “which are frankly, not very effective for this type of pain”
  • “We take nerves that are noisy and active that should be quiet, and we put them to sleep with local anesthetics.”
  • “Most importantly… we use a rigorous and often uncomfortable process of physical therapy and occupational therapy to retrain the nervous system to respond normally to the activities and sensory experiences that are part of everyday life.

The future is actually even brighter:

“…the future holds the promise that new drugs will be developed that are not symptom-modifying drugs that simply mask the problem, as we have now, but that will be disease-modifying drugs, that will actually go right to the root of the problem and attack those glial cells….that spill over and cause this central nervous system wind-up…”

***

It’s really interesting for me to look back on this talk, now, and see how my perspective has changed since I first watched it in 2011.  Back then, the point about glial cells largely went over my head (probably because I wasn’t invested at all in knowing what they were).

Now that I’ve taken anatomy & physiology as well as an undergraduate neuroscience course, I can actually see how groundbreaking this really is, to identify glial cells as a potential source of the problem.

It’s as though you’re looking at a telephone pole, and you realize that the wooden pole itself was sending signals, instead of just being there to hold up the electrical wires.  (If that metaphor makes sense).

Anyway, I really hope Dr. Krane is right, that we can begin to develop drugs that will target this mechanism for chronic pain.

Hope you enjoyed this talk!