Healing our bodies, and the things that ripple across generations

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A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

***

Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

***

I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

***

I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

***

Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

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Maybe my weaknesses aren’t weaknesses. Maybe they are strengths.

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When I first started this blog back in 2012, I kept it largely a secret from the people in my life.

I wanted to help people struggling with the same things I’d been through, but I was afraid of the consequences of putting so much personal information online.

After all, wasn’t putting a long list of all my health issues, and detailing my sometimes-inability to get through work or school just giving potential future employers a reason to not hire me?

But as time has gone by, I’m starting to see things differently.

***

Now, this post isn’t meant to be just about me.  I’m not trying to come on here and just brag about how great I am.

But the more I write, and read other blogs, and interact with other people sharing their own stories, the more I realize just how much courage it can take to really face the cards you’re dealt, and try to make the best of a rough situation.

And that maybe, just maybe, other people will be able to see that about you.

***

I stumbled upon a J.K. Rowling quote recently that I really loved:

“It is our choices, Harry, that show what we truly are, far more than our abilities.”

We are more than the sum of what our bodies can or can’t do.  I believe we all come into this life with certain lessons to learn and challenges to face, and physical limitations are one way in which we do that.

However, we can’t always count on others to immediately understand, or know what we are going through.

Which has led me to wonder…

What if we told our stories more, not less?

Will a future employer really look at my blog and count up the number of times I said I wasn’t feeling well?  Or will they look and see that I love to write, and that I’m doing my best to explain scientific concepts to a general audience, in the hopes that it might help others?

Will they really go through and count the number of years it’s taken me to get through all of my grad school prerequisites?  (Well, probably).  But, if they read through some of my posts, they should be able to see that, on the subject of chronic pain, I’ve basically already been to grad school.

A different kind of grad school, maybe, but I think you can certainly call what I’ve been through “Advanced Study.”

I speak from experience… I practice what I preach.

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I’ve been trying to get more comfortable with putting photos of myself up online… here’s a nice dark blurry one!

***

I’ve had a number of misunderstandings recently with people I care about.  The misunderstanding arose because I thought they already knew my perspective and what I was going through, and then it turned out they didn’t.

It’s led me to the realization: how can I expect people to know if I don’t tell them?

Maybe keeping quiet and assuming people will be able to read between the lines isn’t the right thing.  I generally try not to complain… but I’m starting to realize that maybe I’ve taken it too far, into not actually sharing my reality with others (funny, because I CERTAINLY share it online!).

My new goal, going forward, is going to be to speak my truth, honestly and compassionately.  And if chronic pain is part of my truth, then I will not filter it out. If people are truly going to understand me and where I’m coming from, maybe they actually need to know.

***

Part of what’s helped me get to this point is that I’ve recently discovered so many great writers/bloggers/poets, who have put into words not just what I’m feeling, but a place, emotionally, where I feel I ought to be going, if that makes sense.  I didn’t know it was my goal, or what lay ahead, but when I saw someone else put it into words, I recognized it.  My next lesson; my next place.

I had so many quotes I wanted to share with you in this post, however I’ve settled on this one from the amazing writer/poet Bianca Sparacino.  I discovered this quote from her a few months ago and it’s had a profound impact on me ever since:

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I want my communication to be clear, focused, and kind.  I want my words to reflect the truth.

Those of us struggling with chronic pain don’t want to complain.  We don’t want to overwhelm others with negativity.   However, we also need to remember that the people in our lives are not mind-readers.

If you really want to share your story with people, you can’t edit parts out.  It might be a temporary solution, but it only lasts for so long, before your longing to be understood will re-surface.

So instead of telling the truth by accident, or when we feel we have no other choice, why not just… say it?

 

 

How I developed central sensitization: Part 5

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

***

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

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

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

***

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

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

***

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

***

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

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

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

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

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

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

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

***

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

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

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

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

To be continued in Part 6!

To read this series from the beginning:

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!

 

 

How I developed central sensitization: Part 3

Okay, I still can’t believe I’m writing about this part of my story publicly.  But it seems like I’ve reached the point in my life where my need to say something is beginning to outweigh my fear.  So here we go:

***

I was 21.

I’d finally had leg surgery, which had successfully cured my compartment syndrome.  And now I’d just stopped needing to take painkillers for my back.  I’d completed three semesters of college, and I was excited to keep moving forward and try to live a normal life.

These posts have been pretty heavy so far, so I want to take a moment and actually reassure you that this was a really positive time in my life.  I loved my new school, and my new friends, and I loved what I was studying.  I was completely at home in the socially conscious, hippie atmosphere of Western MA–  I felt as though I was finally where I was meant to be.

But something had changed within my body.  Even though I no longer had a major injury, it seemed like every little thing I did could set off some kind of pain.

I’d open a heavy door, and my elbow would hurt afterwards, for days.

I’d do a lot of typing, and my wrists would burn so intensely that I’d start wondering if I had carpal tunnel.

I tried to get back into running, but the first time I reached a good speed, I developed a stabbing pain underneath my right shoulder blade and had to back off.

At the time, I’d had no idea this could have anything to do with the way my nervous system was functioning.  It just seemed like my body had changed; like it wasn’t able to heal from things anymore.

I actually started to wonder if there was something fundamentally wrong, deep in my tissues, and now I was somehow prone to getting injured really easily.  It seemed like every little thing I did created more pain.

***

I didn’t like this new body, and I wanted my old body back.

I remembered what it was like, before my surgery and this whole episode with “glass back syndrome”– before pain had encapsulated my whole body.

I’d had other injuries before, of course– shin splints, as well as a partial tear of my hip flexor tendon during my freshman year of high school.   But what had made these injuries different is the pain always stayed in one place, and when the injury had healed, I was strong.

Now my body was profoundly different.  I felt like it couldn’t withstand anything; couldn’t stand up to life.  Every little thing made me feel like something was broken, or that I was “injured.”

If I opened a door wrong, or carried something heavy, or went for a walk when it was super cold out— every little thing I did seemed to create a “micro-injury.”  I’d have pain, or pins and needles, or some other weird symptom, and feel like I couldn’t use that part of my body for days.

My once powerful body, that had carried me up hills, and down rocky slopes– the body that made half of the girls on my cross-country team hate me, because I was always #1– somehow, right as the rest of my life was starting to get back on track, it had turned to glass.

To be continued in Part 4.

To start from the beginning of this series:

How I developed central sensitization: Part 1

Here’s a post I’ve been meaning to write for a long time: the story of how I personally developed central sensitization.

If you’ve been reading my blog for a while, you’re probably aware that central sensitization occurs as the result of some sort of insult to the central nervous system.  Basically, if the body gets enough practice sending pain signals, it gets “better” at it– meaning you start experiencing pain more intensely, with less provocation.

So.  How did it happen to me?

As I’ve touched up in previous posts, my high school years were pretty rough.  Basically, a bunch of bad things happened in my life, too close together for me to know how to deal with.  When I look back on that time, it’s like my thoughts and emotions were tangled up in one big knot– a knot it would take me years to untie.

At the time, one of the ways I coped was with exercise.  I struggled with depression, and the endorphins I got from exercise were one of the only things that made me feel normal.  That one- or two- hour window each day after my workout was the only time I felt like the clouds lifted, and I could think clearly.

The other way I coped was by restricting my calories and keeping my body at an unhealthily low weight.  I’d perceived myself as being a little bit chubby at the time the bad things started to happen, and being skinny was part of the new me.  Paradoxically, with each ounce of flesh I was able to strip off from my bones, I felt I was adding a kind of layer of “protection” around me, ensuring that things couldn’t go back to the way they had been.

So, I was starving myself, and running an average of 40 miles a week.

***

I ran for my school’s cross-country and track teams, and before I go on, let me say that I loved running for its own sake.  And I was good at it.

But I took it too far.  For a while, my body’s natural ability allowed me to excel even as I got skinnier and skinnier.   I was hitting faster and faster times– winning medals, even– as more of my skeleton became visible.

Obviously, this was a recipe for disaster, and eventually I developed compartment syndrome in my lower legs.  It’s a condition that’s somewhat similar to carpal tunnel– basically, I had a lot of fluid being trapped inside of my lower legs.  I’ll write more about compartment syndrome later, but for now, let’s just say that it got worse and worse until I’d gone from almost being able to run a five-minute mile to barely being able to walk.

I suffered from compartment syndrome for the next two years before finally deciding to have surgery, and wow– I really wish I could take that decision back.  I wish I’d just had surgery sooner, because it really solved the problem almost immediately.

However, at the time, my orthopedist had suggested I try more conservative forms of treatment.  None of them really worked, but on some level, I was lost in my own inertia.

I had been trying, and trying, and trying for so long– forcing myself up at 5 am to work out, when I’d barely been able to sleep the night before because I was so hungry.  I was just done.

***

Those two years, from age 17-19, are somewhat of a blur.  I was still struggling with depression, although things improved dramatically after I graduated from high school.  I actually tried to work out in a pool but wasn’t really feeling it– ironic, because all these years later, the pool has become my second home.  But at the time, I was just too depressed to think or function clearly.

So I waited those two years, sometimes trying conservative treatment methods, sometimes going to physical therapy, sometimes working out in a pool.

The compartment syndrome was not so much excruciating as it was frustrating.  I knew where the limits were pretty clearly– how much I could push myself before the feeling of pressure built up in my lower legs, and my feet started tingling.

But it was still a constant buzz in the background, like an annoying mosquito buzzing around my ear for those two years.  I couldn’t forget about it– couldn’t even stand in line at the movies.  Whoever I went with had to stand in line while I waited on a bench.

***

I tried to go to college like all of my friends.  I actually went to a large Division I school, thinking somehow I’d get back into running.  But really, things were getting worse, and it was becoming harder and harder to walk.  There wasn’t adequate public transportation around campus, and I’d have to decide whether I wanted to walk to the library that day to get my books for class, or if I wanted to actually go to class.  My body couldn’t do both.

That’s when I realized this couldn’t go on, and decided to come home and have surgery.

***

The surgery itself was not very invasive at all.  The place where my orthopedist had to make a few incisions was very superficial (aka close to the surface) so he didn’t have to dig around too much.  I came home from the hospital that same day, and although I spent the following day completely knocked out with narcotic painkillers, by the second day I wasn’t even using my crutches (although I still had casts).

Everything seemed normal right after the surgery, although from what people have told me, surgery like that can be a big trauma to the body.

I didn’t notice anything right away– in fact, I was healing pretty well.  But, as I later learned, it’s possible that everything my nervous system had already been through– the constant bombardment from the compartment syndrome, as well as the surgery- would have a delayed effect.

***

As luck would have it, I had developed acid reflux right around then.  My doctor suggested I try sleeping propped up by pillows at night, so gravity could keep the acid down.

Big mistake.  I woke up after one night in absolute agony.  I had completely thrown my back out– the whole thing felt like one giant muscle spasm.

I had never had such a silly, simple little thing cause so much pain before.  The only injuries I’d had before had been serious running injuries, that came from pounding my legs into pavement 40 miles a week.  But this silly, little simple thing actually had me in excruciating pain.

And this– THIS.  After everything I’d been through, this is how my chronic pain problem started.

Looking back, I can see that it probably wasn’t just the issue of throwing my back out.  Instead, it was probably a combination of factors– everything my body had been through, coming together to create an overwhelming effect all at one time.  My nervous system had just had too much.

Of course, I didn’t know what it was at a time.  I had never heard of such a thing as central sensitization, and in fact, I wouldn’t– not for another six years.  I had a long road ahead of me.

To be continued in Part 2.

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!

 

The core message of pain neurophysiology education

In the traditional model of physical therapy, the physical therapist prescribes stretches and exercises for the patient in order to improve function in one part of his or her body.

For example, if you have back pain, your PT will probably give you strengthening exercises to build up the muscles in your back and your core.  If you have a knee injury, she’ll  probably give you exercises to strengthen the muscles around the knee.  This is why when most of us picture physical therapy, we imagine a patient grunting and sweating in a gym while the therapist looks on.

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Pain neurophysiology education, however, draws from a different treatment model.  This model is not based on the idea that the patient’s pain is coming an injury in one specific part of the body.  Instead, it targets the sensitized nervous system directly as a source of pain.

The best way I can try to describe this is with graphs.  The first graph below shows the way most people imagine pain to work.  It also shows what most physical therapists are imagining when they prescribe stretches and exercises to improve a patient’s function:

acute pain graph

You can see how, as the intensity of the injury diminishes (represented by the black line) the intensity of the pain diminishes as well (represented by the red line).  This matches our experience of pain in most minor situations: getting a tooth drilled, pulling out a splinter.  When the stimulus goes away, the pain goes away.

However, in situations involving chronic pain (generally defined as a painful experience that lasts for at least two to three months) the pain response works differently.  Prolonged exposure to a painful stimulus actually produces changes in how a person’s nervous system works.  It’s as if it sets off a feedback loop in which pain signals continue to be produced independently of the level of injury.  For this reason, pain persists even after the initial injury has healed:

chronic pain graph 2

This second graph is an accurate representation of the state I was in when I was first introduced to pain neurophysiology education by my physical therapist Tim.  I had a very high level of pain, but it was not correlated with a high level of injury in my body.  This is why I hadn’t seen much improvement with any of my past physical therapists– my pain was coming from my nervous system, not from a specific injury in my body.

“If pain is the patient’s primary symptom, then pain relief should be the primary goal of treatment.”

I once read something along those lines in a blog comment section, and it really stuck with me.

Most physical therapy programs are designed to improve function of a certain part of the body.  But when your pain isn’t coming from a problem with a certain part of your body, you can stretch and strengthen until the cows come home.  It still won’t change your level of pain.

This is why none of the physical therapists I had seen before had been able to help me.  They were all stuck on the idea that I needed to strengthen my back; strengthen my abs; strengthen everything.  Of course, in some ways they were right.  I wasn’t in the greatest shape.

But what Tim was able to identify is that there was a common denominator behind all of the pain I was experiencing in different parts of my body.  Rather than looking at each one as unrelated, he recognized them as the symptoms of an overactive nervous system, or, as he taught me, body alarm system.

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The goal of PNE is basically to help the patient’s body “remember” what an accurate pain response is supposed to be.  There are a few ways to accomplish this, and I will be discussing them in upcoming posts.  But the general goal of these various techniques is to help the patient’s nervous system get back in touch with with the reality of what’s happening in his or her body.

This graph shows the general goal of treatment:

input to nervous systemThe blue arrows represent the input you want to give to your nervous system.  You’re basically saying to it, “Hey.  Hey you.  You are freaking out for no reason.  This is reality, and it’s over there.”

The role of the physical therapist is basically to help the patient’s nervous system realize it doesn’t need to be on high alert all the time, and to slowly help it calm down.  The idea is that as time goes on, the discrepancy between what the person’s nervous system feels and the actual level of dysfunction in his or her body will slowly shrink.

Now, to be honest, I’m not sure you will ever be able to fully reverse the process of central sensitization.  It’s probably possible, but it hasn’t happened yet for me.  That’s why I didn’t draw the red line going all the way back down to the bottom.  An overactive pain response will always probably be somewhat of a factor for me, but it is a million times better for me now than it used to be.  I’d much rather have the red line close to zero than soaring way up high, totally out of touch with my physical reality.

P.S. I adapted this post from Part 3 of my series on my own patient experience with pain neurophysiology education, entitled “How a physical therapist helped me through my lowest point.”  I’m experimenting with different ways to present information, to find out what works best for people.  Definitely check out that series if you’d like to know more!  I would love to hear any comments or questions you might have.

Photo Credits:

  • Strength training equipment pic: colonnade
  • Balance training equipment pic: kbrookes

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.

 

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!