Central Sensitization, Chronic Pain, Creative Writing, Inspiration, Nervous System, Pain Neurophysiology Education, Pain Science, Treatment Approaches

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!

 

 

Creative Writing, Inspiration, mindfulness, My Story

Reasons why I write

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Every once in a while, I freak out.  Why in the world am I putting all this personal stuff about my life online?

I woke up this morning feeling like I needed to update my blogging “Mission Statement.”  I wasn’t sure if I was going to share it or not, but now I feel like it belongs here.  So, here are the reasons why I write:

To share what I’ve learned.

To prepare for my future career and crystallize my thoughts.

I’ve had to learn so much and go pretty in-depth on certain topics just to heal myself.  Now, I think it’s pretty clear what my future specialties will be as a PT, and I want to make sure I remember exactly where I’m coming from and what motivates me.

I don’t believe the traditional (insurance-based) physical therapy model is the best.

Honestly, in an ideal world, I wouldn’t have had to learn all this stuff.  Sure, I’m interested in it, but I also had to learn to take things into my own hands.

Even the times I found someone to really help me, it was never quite enough.  They were always under pressure from insurance companies, or company they worked for, to get results and demonstrate that I was progressing by certain markable bench lines each week.

In real life things are not always that clear, especially when you are dealing with a chronic condition.  People have setbacks– it doesn’t necessarily mean that their treatment isn’t helping.  It’s just the way things go.  External factors occur in our lives; our individual health fluctuates.

I recognize there are gaps in our current system, and I see how those gaps have failed me.  

I am putting this information out there so other people don’t have to spend the same amount of time looking for it that I did.

There is no good reason why things took me this long.  Honestly.  It took me years –and appointments with more medical professionals than I care to recall right now– to find the answers I needed, both for chronic pain and my SI joints.

There was no real reason, other than the first few doctors/PT’s I saw didn’t know what they didn’t know, so to speak.  So they left me with the impression nothing more could be done, when that was far from the case.

So now, I put my answers out there, for anyone who is desperately Googling the same things I used to.  

I don’t want it to take you that long.  It’s the best way for me to fight against that sense of pointlessness; to think that at least, maybe my experience can spare someone else what I went through.

I want to turn my experiences into something good.  

For a while, I tried to block out the enormity of my experience, and not acknowledge the big picture of how much things sucked at times.  It was the only way I could get through it at the time; to tell myself things weren’t that bad, to block some of it out.  To ignore how much I was missing out on.

But now that I’m a little bit older and wiser, my outlook has changed.  I try to accept what’s happened, and even try to find the good in it; the lessons learned.

There is good in it.

Luckily, through all of this, I discovered I truly do love learning about the human body.  I had never really thought of myself as much of a science person when I was younger.  In school, I gravitated towards the humanities and social sciences because I felt so passionately about social issues (and I still do).  And when you’re that age, I think you sometimes feel pressure to put yourself into a certain category.  I was a “humanities” person– I didn’t know I could also be a science person.

Educating myself– and others– on the science of the human body allows me to see how far I’ve come.

I haven’t written much about this yet, but when I was younger I put my body through the ringer.  I had an eating disorder and I exercised way too much.  Refusing to listen to my body caused me to develop the injuries that set off this spiral of chronic pain.  So it’s fulfilling for me now– almost meditative– to learn about the body from a scientific perspective, and to help other people find their way to a healthier life.

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So I write:

To gather and clarify my thoughts;

To record the useful information I’ve already learned;

To share things that you might find helpful, some of which took me years to find;

and to let others know that, despite all of what I’ve been through, it’s actually possible to come out on the other side.

I hope what I write is helpful for you.

Central Sensitization, Chronic Pain, Creative Writing, Pain Neurophysiology Education, Pain Science, physical therapy

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.

 

Favorites, Inspiration, mindfulness, My Story

San Francisco, Revisited

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It’s so interesting for me to go back to San Francisco.

As you may remember, I spent a few weeks in SF back in June, following a good friend’s wedding in Napa Valley.

I actually just wrapped up another trip out there. I spent most of September in SF, staying with a friend and trying to investigate whether I’d eventually want to move there for work and/or grad school.

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The city of San Francisco is symbolic for me, for a number of reasons.

Back in 2005, one of my friends from high school (CA) and I had planned to travel to the Bay Area and visit our friend Karen, who was attending Stanford University at the time.

Our trip was actually planned for the same time of year– September.

However, I’d just had my surgery for compartment syndrome that spring, and at the last minute, I freaked out and canceled my plane ticket. After all I’d heard about San Francisco’s hills, I just didn’t think my legs were ready, and I didn’t want to take a chance. So CA flew out by herself, and I stayed behind to mend.

I was 19 at the time, and although I didn’t know it yet, I actually had somewhat of a long road ahead of me. As I’ve mentioned in previous posts, I didn’t travel at all in the first half of my 20’s, and it was only in the second half that I started to ease back into it with local trips, such as camping in the White Mountains of New Hampshire.

As most of you probably know, I developed my problems with central sensitization (CS) around that same time, shortly after my leg surgery. I definitely don’t think the surgery caused the CS, but as something that the body perceives as a “trauma,” it may have been one of the precipitating events.

I’ll talk more about why I developed CS in the future, but for now, what I want you to know is that for the next five years, I didn’t travel at all. The second five years, I got back into it slowly, but only local trips, and not by myself.

So now, at 31, after everything I’ve been through: compartment syndrome surgery, discovering pain neurophysiology education, struggling to heal my sacroiliac joints…. it feels almost like I’m living in a dream world. To be able to travel to San Francisco and walk around to my heart’s content– it’s like I was transported to a parallel universe.

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Here was the moment when it really hit me, how far I’d come:

I was walking from my friend’s house to the gym, and I ended up walking up some really huge hills. Like, gigantic hills– the kind you think of, when you think San Francisco.

And I was just doing it. I wasn’t sightseeing– I hadn’t set out to “walk the hills.” I was just trying to get from one place to another, like anyone. Like a local.

And it was okay.

I mean, if anything, I got a little bit of a wake-up call about maybe needing to do more cardio. But after all the years I’ve spent only being able to work out in a pool, it was such an amazing feeling to be moving through the world, as fast as I wanted, feeling my heart pumping. I was free.

It was a feeling I’d forgotten– to truly push my cardiovascular system to its limits with each footstep, out in the wind, out in the sunshine. For the past few years, I only got to experience that feeling within the safe, weightless environment of the pool.  While I am so grateful for my pool workouts, my trek on this day brought back a form of muscle memory. With the thud of each footstep, I was awake. I was back.

The thing is, this isn’t really meant to be a post about physical accomplishment. Instead, it’s about my unexpectedly “Returning” to an aspect of life that I was prepared to live without.

I had made peace with not being able to move the way I wanted. Not being able to travel, and more or less being stuck in place, taught me to try to always notice the beautiful little things around me. I’m not saying I succeeded all the time, but it was a skill that I worked at, and I got better at it.

I had to learn to savor the little things– the colors of the leaves in fall, the glitter of sunlight filtering through the trees, the taste of really good coffee– because it was the only way to make up for the things I’d lost.

Over time, it started to come more naturally. Maybe I was just getting into a better place in my life, emotionally. Maybe I was just growing up. Or maybe it was all of these factors.

But the point is, it happened. I learned to live without running, without traveling, without feeling free in a geographical sense, because I realized there were more important ways to feel free.

Now that that kind of freedom has come back to me, it’s like an unexpected bonus. And I view it gratefully.

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My Story

Newfound possibility

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I’ve been away from my blog for the past month, and I have so much to tell you all. I took what was supposed to be a five-day trip to a wedding in California, and turned it into an amazing, impromptu two and a half week stay.

To be honest, I was really scared to take this trip. Since I first developed health issues at age 19, I have really not traveled very much at all. It’s only been in the past four years or so that I’ve started to open myself back up to small weekend trips around New England.

But California? I had to go… one of my oldest friends was getting married.

So I went. But I really didn’t want to.

I hadn’t traveled in so long that everything felt rusty. I’d clung to the same routine for so long, hoping my pain and SI joint issues wouldn’t get worse… and now, everything was about to change.

Now that I look back, I can’t believe I was so scared of a five-day trip. It’s not like I was traveling to the middle of nowhere. I was going to Napa Valley and San Francisco… two places that are hardly without amenities. I had just gotten so used to the idea that travel was not for me, that I felt as though I was traveling to a foreign country.

So I went.. and everything turned out fine. Better than fine. The wedding was in Napa, and then after that I spent two nights at my friend Karen’s apartment in San Francisco. We were having such an amazing time catching up, Karen finally getting to show me the sights and sounds of the city she’d been telling me about for ten years. After one day, we decided I should switch my plan ticket and stay. It’s something that felt so out of character for me… but I did it.

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It ended up being a great adventure, and in some ways… I feel as though I re-joined the modern world. (It feels weird to tell you all this, but it’s the truth). My health issues had forced me to stay still in one place for so long, that it seemed so much had passed me by.

Now, it was time for bootcamp. I had to remember how to book a plane ticket; how to check a bag and get through security. How to handle a rental car. I got an AirBnb account; I got Uber; I got Lyft. I had to navigate us all throughout Napa Valley for the various wedding events, and then back down to San Francisco.

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I had to put so many of my fears aside, because there simply wasn’t time for them. And I realized that (apart from the extreme amounts of money I spent on the trip) most of my fears turned out to be unfounded.

To be fair, I had some amazing friends to help me. My friend Karen is amazing, and so is my friend Amanda, who flew with me from Boston to be my plus one at the wedding. Part of the reason I asked Amanda to come – other than, of course, wanting her company– is that I was afraid I would need a lot of help physically, dealing with my suitcase and stuff like that.

But it was all okay, and if anything, I realized I really didn’t need Amanda’s help as much as I thought. Now, I actually think I could have made the trip alone (although I obviously still would have wanted to have Amanda come for the company!).

The lesson I’m taking away from this is that sometimes, change can be good. A new experience, particularly one that we fear, can be a great way for us to open ourselves to new possibilities, and to learn things we didn’t even know we didn’t know.

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Now, I’m not suggesting that things are always going to be easy, or that all those of us with health problems have to do is wave our magic wand, think positive, and hop on a plane, guaranteed a great trip.

There’s a lot that has gone into getting me to this point. Learning the right exercises to strengthen my body, and learning the right techniques to help calm my nervous system. My life is opening back up again, but it’s only been because of the time I’ve spent being mindful of how I live, and carry myself, and remembering to work with my body instead of against it.

This is why I feel so powerfully about some of the things I share on my blog– when you have chronic pain or fibromyalgia, it is possible for things to change.

I’m so glad I took this trip, and am so excited to see where my newfound sense of possibility takes me. I hope you will all stay tuned!

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Creative Writing, My Story

Graceful.

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I’m one of those people who is spiritual, not religious.  But I love holidays because of how everything slows down, and people come out of their shells.

In Boston, on a weekday… you better not dare to take an extra two seconds to make your turn, because you’ll definitely get honked at by at least one person.

But on a day like Easter, things are slower.  People come from out of town and are reunited with their families.  They go out for huge, multi-generational walks with grandparents and babies in strollers, friendly dogs pulling excitedly on their leashes, everyone actually saying hello to one another… It’s as if, for a day, the masks are taken off and you truly see the people you meet.

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These days, I am not always the most physically gracefully person.  Although I have had some good days with my SI joint, I’m still far from out of the woods.  Sometimes it’s really hard to walk and, in the hustle and bustle of everyone trying to get everything done, I often feel as though I am in the way.

And sometimes, people are not subtle about needing to get by me.  I don’t always walk with a visible limp– I don’t think people can tell something is wrong.  After all, I’m not elderly.  I don’t think it occurs to a lot of people that anything could be wrong.  It just looks like I’m oblivious, taking my sweet time and daydreaming while taking up space on the sidewalk.

But the thing is…I get it.  I know what it’s like to be in that mode.  I can feel myself switch into it when I’m in a hurry, and feeling a lot of external pressure to do things I don’t even really want to do (especially, in the past, when I’ve been on the way to a job I hated).

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I’m not one for trying to find the silver lining in every bad experience.  I don’t think everything happens for a reason.

I’m more about acceptance— about being okay with the fact that all this bad stuff happened to me, and there wasn’t necessarily a reason for it.  Maybe I didn’t need learn a lesson.  Maybe it just happened, and it was pointless.

However, something thing I’ve learned in the past few years of dealing with health issues is the value of going slowly.

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I realized I don’t like being in angry, rushing person mode.  I don’t like the stress that rushes through me when I don’t make a green light; I don’t like how I annoyed I get when the person ahead of me in line takes too long at the cash register.

I’d rather be the kind of person who notices that the painstakingly slow driver in front of me has just pulled out from a hospital parking lot, and that her teenage passenger is wearing a face mask (in other words, something’s seriously wrong).

The kind of person who realizes that the elderly man taking way too long ahead of her in line has probably just had brain surgery, and is out for his first post-surgery outing with his aide.  The kind of person who manages to smile at him as though nothing’s wrong, despite the dramatic white bandage wrapped around his head and the purple blood pooled beneath his eyes.

The kind of person who doesn’t think about herself and her needs first– instead, she thinks about how she can help.

I’ve been both of these people, and I know which one I’d rather be.

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Although I’m not as physically graceful as I’d like, it’s way more important to me to be a graceful person.

To be someone moves through life as smoothly as possible, without creating too much of a wake. To be someone who heals, and tries her best not to harm.  (And, when she realizes she’s made a mistake, apologizes).

After all, none of my lasting memories are about that great time I got exactly what I wanted.  My memories are about the things that move me: the times I went out of my way for someone else, and managed to sense intuitively what they needed.  The times when someone else did that for me.

People can be amazing, and incredibly smart and kind.  But you have to remain open to it; you have to let them.

I no longer measure myself in mile times.  I measure myself in how well I was able to make eye contact with that elderly man, without letting my face show how shocked I was by his appearance.

Or in knowing the right thing to say, when a friend comes to me for help in a crisis.

That, to me, is what’s graceful.

***

Pink flower photo: alcidesota

Favorites, Interesting Articles, Neil Pearson, Pain Science

Neil Pearson: Blending Optimism and Scientific Evidence

One of the things I really admire about Neil Pearson’s approach to chronic pain treatment is his optimism about our ability to re-train our nervous systems, once they’ve become sensitized to pain.

Chronic pain is obviously not a cheerful topic. Those of us who’ve struggled with it know what it’s like to come home from the doctor’s office feeling totally hopeless (or worse, insulted).

Then, on the other end of the spectrum, are the people who promise things that are too good to be true. In the six years I struggled with chronic pain before discovering Neil Pearson’s work, I tried just about everything under the sun. Over time, I came to find that the more optimistic someone was about their ability to “cure” my pain for good, the less their treatments actually helped in the end.

Neil’s approach is totally different, because while he has a very optimistic view on our ability to change our pain, his work is very much grounded in science, thanks to his training as a physiotherapist.

(By the way: if you’re new to my blog and don’t know who Neil Pearson is, or why I’m writing about him, you should probably start here!).

Recently, I’ve been looking through some of Neil’s older, open-access materials, which are now available under the “Resources” section of my blog (thank you, Neil!). Although I’ve been familiar with Neil’s work for a while now, I hadn’t yet seen these. I found them really interesting, because they provide a window into the thought process behind his unique perspective.

In particular, his article on the “Optimistic Scientific Recovery Model,” laid out a few key points that I felt like I’d sometimes struggled to articulate to people, so I thought I’d share them with you now.

Basically, Neil’s work is about helping people find a way to get past the limits of what they, or their doctors, had thought their recovery from pain might be.

His work is not meant to take the place of other medical interventions. Instead, it’s geared toward patients who have fully pursued all of their treatment options, and are still in pain. In other words, it’s for the patients whose doctors say there’s nothing else that can be done.

Neil’s point is that something else can be done. And in my own personal experience, that something else can be life-changing.

It’s all based on the concept of neuroplasticity– the idea that, with enough practice, we can begin to change the way our nervous systems function.

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There are many different aspects to how we can begin to try to change our nervous systems.  I’ve written about pain neurophysiology education before– the idea that when we learn more about how pain works, as well as what’s happening in our bodies overall, it can begin to diminish some of the emotional effect that that fear has on us.

However, as I read through Neil’s articles, I’m reminded that there are many other different angles to exploring chronic pain/neuroplasticity. For example, in the “Optimistic Scientific Recovery Model,” he also writes about the importance of mindfulness and body awareness; learning to relax our bodies instead of remaining tense, which only increases pain. It’s not just about exercises to increase strength; it’s about learning to move mindfully, in beneficial ways (something I know I personally could work on!).

He also talks about the idea that we can distract the nervous system from focusing pain by giving it other information to process. Things like breathing exercises, meditation, and visualizations can all help accomplishing this, as can rhythmic movements such as gum chewing. (I first wrote about this a few weeks ago, and it still blows my mind!  For more about the gum-chewing study, click here).

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I really think that Neil’s approach has the potential to help a lot of people– which is, of course, why I’m always talking about it on this blog.

Since I started working on this blog a few years ago, I have met so many great, interesting people who have been suffering from pain for a long time, and are taking matters into their own hands by doing their own research.  Open-access articles like these can be a great jumping-off point.  Some of them are geared more towards other medical professionals than to patients, but hey: information is power.  I think there are a lot of great ideas contained within these articles, which is why I’m so happy to share them with you.

For more articles like this, check out:

Key messages of understanding pain

Pain management strategies

Understanding pain basics

and many others to be found under the Resource section of my blog!

And, of course, Neil’s website is www.lifeisnow.ca. He has updated it recently with a lot of really great new resources for both chronic pain patients and medical professionals– you should absolutely check it out!

Happy researching!

Inspiration

Crystallized

What I love about winter is how everyday scenes can become beautiful, under different conditions.

Here are some photos I took off of my porch after last week’s storm.  It snowed all day, and then stopped right before sunset.  I have lived here for almost a year, and I had never seen these colors.

I love these photos, because they remind me to stay open to the beauty all around me.

Beauty can be everyday– but you have to be receptive to it.  Stay in the moment; keep your eyes open.

It’s there– you just have to remember to look.

Even the ordinary can be beautiful.

 

 

 

 

Chronic Pain, My Story, Sacroiliac Joint

What’s going on with me right now

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It’s been a few years now since I first began to understand my pain problem– three, to be specific.

Since then, I feel like I’ve made a lot of progress in terms of how I view pain and my nervous system, and how much trust I have in my body.  Finally, I was able to break the cycle I’d been caught in for years, where where I’d go from doctor to doctor, begging them to explain why I was in so much pain.

Unfortunately, at the same time that I’ve gone through these mental and emotional transformations, I’ve also had some very real physical issues to deal with.

I mentioned at the end of “How a physical therapist helped me through my lowest point, Part 8” that I was developing chondromalacia patella in my right knee, and that it was made worse by the fact that my physical therapist told me the pain wasn’t significant and that I could try to ignore it.

I was 26 when this happened… I’m 29 now.

What happened in the intervening years is so incredibly frustrating to look back upon. I thought my problems were ending when I finally solved my pain problem, but thanks to the chondromalacia patella, things were actually going to get a lot worse before they got better.

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The only way to look back on the past three years without feeling completely powerless is to focus on what I could have done differently, knowing what I know now. Now I know:

If only I’d started physical therapy for the chondromalcia patella sooner, it never would have gotten as bad…

If only I’d known that the cortisone injection wouldn’t be worth it; that all the extra fluid in my leg would put me on crutches for a week…

If only I’d known how quickly I would become weak from inactivity, I would have refused to hold still…

If only I’d known that working out in a pool would be the only option for me, I would have joined a pool right away and not wasted any time trying to work out on land…

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Basically, I started physical therapy for my knees too late. I went to physical therapy and did everything my new PT told me, but all of her exercises weren’t enough to counteract the downward spiral I’d ended up on.

As I would learn, there are two ways to weaken a muscle. One is to not use it at all. The other is to completely overuse it so that it doesn’t have a chance to rest.

I was, unfortunately, doing both of those things. It was excruciatingly painful to put any weight onto my right knee, so I moved very, very little—causing all those muscles I wasn’t using to weaken.

Then, when I did move, I was completely overusing the muscles I could use—aka putting all of my weight onto my left leg and completely overworking the muscles of my left hip.

I was doing everything my physical therapist told me, but I just ended up with even more pain in the front of my left hip, and then my right hip, and then the chondromalacia patella started up in my left knee. Then I ended up with pain in my low back.

And then, about six months after I’d really started limping because of my knee, I developed some issues with the sacroiliac joint (where the pelvis meets the spine, in the low back).

wikipedia SI joint

The sacroiliac joint turned into its own saga, which I will have write about in future posts, because there are basically no helpful articles about it online.

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Things only started to get better for me when I started to work out in a pool, and even then, getting stronger was no easy feat.

I finally feel like I’ve started to figure everything out now; three years later.

It meant I had to let go of a lot of things I’d learned about exercise in the past, and really study some basic concepts in order to help myself.

I had to really learn a lot in order to help myself. It was hard to get help from anyone else, because, as anyone who’s been a patient knows, physical therapists (at least in this country) can only focus on one diagnosis and part of the body at a time.

I didn’t need physical therapy for my knees anymore. Or my hips. I needed to strengthen everything.

I didn’t have just one or two weak links anymore… I literally did not have the baseline amount of muscle that would allow me to walk from one end of the house to another and hold all of my joints in place without pain.  (Both the chondromalacia patella and sacroiliac joint issues were ultimately caused by lack of muscle strength).

So I had to start from scratch. From less than nothing, because I had to find a way to move despite the fact that many of the movements we take for granted were impossible for me.

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Ever since the first time I wrote a description for the “About” section of my blog, I’ve said I planned to write about exercise and fitness. I haven’t quite gotten around to that yet, but now you, my readers, know why I will.

I don’t really plan to write about fitness from a bodybuilding or super-overachiever standpoint. That stuff is interesting, but it’s just so far removed from my daily reality right now that I don’t really have much use for it.

What’s important is the basics. Knowing that if you strengthen a muscle without ever stretching it, you will shorten its resting length. That there is a difference between strength and endurance, and if you only train for one, you will never develop the other. Knowing about this little thing called the Golgi tendon reflex, which will allow you to relax just about any muscle you want just by putting pressure on it (the concept behind foam rolling).

These are things that people with chronic pain can benefit from knowing. When I look back, I can actually see how a lot of my issues with pain—confused nervous system or not—were also related to the fact that I was simply so out of shape from the injuries and periods of inactivity I’d had when I was younger. I mean, yes, I had a heightened pain sensitivity, but at the same time, anyone who was as weak as I was was bound to be in pain. There’s just no way that wouldn’t happen.

I hope the things I’m going to write about will be helpful for you all. I’m going to talk about how my perspective on changed, and how I was able to use what I’d learned from Neil Pearson’s techniques to cope with what I was feeling, while at the same time knowing I had some physical issues that I couldn’t immediately change.

So much has changed in my life, even though all the while to the outside observer, it looks like I’ve been holding still. But that is just so, so far from the truth (sometimes I need to remind myself of that!).

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Photo Credits:

Inspiration, Uncategorized

Maybe everything is amazing

I first saw this Louis C.K. clip a couple of weeks ago, and I’ve been thinking about it ever since. (Be sure you watch until the 3:05 mark, which is where he really starts to make his point).

Studying anatomy and physiology and learning about the body has helped me to get to the point where I can start to appreciate just how crazy/complicated/complex our experience as human beings is.

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A lot of people seem to become intimidated when I talk about taking these classes, and say things like, “Yeah, but I’m not any good at science.”

It makes me really sad to hear people say that, because honestly—there was a time when I didn’t think I would be any good at science, either.

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I did pretty badly in science classes in high school because, well, my life was falling apart. I just couldn’t get it together enough to study enough, and when I did, nothing could really become cemented because I hadn’t really slept.

I did much better in the humanities classes, because it was easier to just wing it. I might have been to out of it to memorize chemical structures, but it wasn’t too hard to just read a novel and give my opinion.

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Then after high school: for years, in the back of my mind, I sometimes thought about becoming a physical therapist.

Originally, the idea was born more out of desperation than inspiration. I was so frustrated by the fact that there was always something hurting, all the time, and that I seemed to have a new physical therapy referral every few months. I was always really interested in the explanations the physical therapists gave me, and always did all my exercises, but it didn’t seem to be quite enough. I sometimes wondered if the only way out of this would be to take matters into my own hands, rather than relying on other people for the rest of my life.

Then I met Tim and watched Neil Pearson’s lectures, and all of a sudden my desperation turned to inspiration. There actually was a reason why I was hurting all the time—an overarching reason that I could work on, rather than targeting different parts my body, piecemeal, for the next several decades. And maybe I could help other people like me, like Tim had helped me.

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This is the point at which I actually started to look into what it would take to get into physical therapy school, and saw that I’d have to take all of the science classes I’d so carefully avoided in college.

Now I am grateful that I had to go back and take all of these classes. And I mean, we’re not really talking high level stuff here—we’re talking general chemistry, introduction to physics. The things you would take in your freshman or sophomore year of college.

Basic as they are, these classes have totally changed the way I look at things.

It’s like recognizing there are two sides to every coin. On one side, I can focus on my experience—the way a certain part of my body feels (or, in most cases, hurts).

If I want to flip to the other side of the coin, I can stop and think about the complex forces that are literally holding this part of my body together. The intricate chemical and electrical signals that sensations to travel from my the rest of my body to my brain, and then back again. And the different areas of my brain that are involved in letting me feel the pain, and determining how much of my attention is devoted to the pain, versus paying attention to other things.

And the thing is—you really don’t need to be an expert, at all, to develop this sense of appreciation. I mean honestly, I know nothing. If I wanted to go into more detail than what I just wrote above, well, I’d have to go open a textbook to make sure I didn’t tell you the wrong thing.

It’s not about mastering this information; it’s just about having been exposed to it, and having a sense of just how complex these things are. Complex, yet also orderly. Yes, we live in a chaotic universe, but our bodies have a blueprint that can be broken down into categories and understood.

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Sometimes I daydream about running a class for chronic pain patients. Not an academic class—more like a continuing ed class.

And we would just go over the very basics from anatomy and physiology. And my students could see that, when you just begin to learn about the body, it’s actually more like a language class than a science class.

Just as you would make a chart of the different parts of speech (past, present, future, etc.) you can make a chart of the major systems of the body. And then you can look at each system and break it down further; for example, you can break the skeletal system down into different types of bones, and then look at individual bones.

And then, as teacher, I would focus on the bones of the spine, since the spine is such a grave, sometimes threatening concept for anyone with back pain. I would explain that even though it looks like some kind of alien invention when you look at a diagram, the spine can actually be simple:

There are four parts of the spine. From top to bottom:

Cervical spine= 7 vertebrae that make up your neck

cervical vertebrae

Thoracic spine= 12 vertebrae in upper- and mid-back

thoracic vertebrae

Lumbar spine= 5 vertebrae in lower back

lumbar vertebrae

Sacrum= fused vertebrae at the bottom of the spine, which make up the center of the pelvis

sacral vertebrae

These terms are things that back pain patients hear all the time, and may even have explained to them. But, in my experience, there’s a big difference between having a doctor mention these things to you in passing—in an appointment where you’re scared of what he or she might diagnose you with—and learning something in a calm academic setting.

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The spine is just one example– there are so many different aspects of our physical being that sound complicated, even scary, when explained by a doctor, but look simple– and interesting– when broken down into smaller categories.

It’s helped me immeasurably to begin to understand this. Having a “second side of the coin” to flip to means it’s easier for me to change my perspective on the physical realities I sometimes can’t change.

Now I can’t think about how much something hurts without thinking about the fantastic nature of how it hurts. The fact that I have a bone, with muscles attached to it, with nerves that let those muscles communicate with this fantastic brain I have—it’s all pretty incredible.