img_0636-2
Central Sensitization, Chronic Pain, Creative Writing, Pain Neurophysiology Education, Pain Science, physical therapy

There is reason to hope.

img_0636-2

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But then, 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.

If you are weak, you are going to have pain and be at risk for additional injuries.  (This is why I went on to develop so many additional problems after I first suffered from compartment syndrome as a teenager, because I had ended up so out of shape).

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

***

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

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

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

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

***

I touched upon this once in an earlier post, and I have to say, I think I phrased it really nicely:

“There is a middle way, where you learn to respect your body’s pain without automatically assuming you are injured.  This means you respect the pain and don’t try to push through it, but you also know not to freak out because you recognize that your nervous system sometimes gives you false alarms.  It’s about being okay with the possibility that maybe you strained something and need to take it easy, while knowing that you probably didn’t.”

This is the balance you eventually need to find, and having a trusted coach by your side who can help you understand what’s going on in your body can make all the difference.

This is the physical therapist I hope someday to be.  The person who understands and can walk you through, even when the path ahead seems scary.  I have been there myself and I know what it’s like.

I also know what it’s like to regain trust in your body.  To go from feeling as though you are made of glass, to knowing what you are capable of– while also knowing your body has limits, and learning to honor them.

This is the balance you need to find.  It won’t be easy, but it is possible.

Central Sensitization, Chronic Pain, Pain Neurophysiology Education, Pain Science, physical therapy, Treatment Approaches

What is pain neurophysiology education?

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

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

***

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

***

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

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

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

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

***

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

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

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

***

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

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

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

***

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

Central Sensitization, Chronic Pain, Nervous System, Pain Science, Resources

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

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

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

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

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

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

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

***

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

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

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

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

Some other quotes:

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

On treatment:

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

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

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

The future is actually even brighter:

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

***

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

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

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

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

Hope you enjoyed this talk!

3320139093_3afa687cc9_o
Central Sensitization, Chronic Pain, Favorites, Pain Science

What is central sensitization?

Central sensitization: the back story to just about every story I tell on this blog. I’ve written the phrase a million times, but always in passing, always with a link to an article somewhere else. I think it’s high time the topic gets its own post.

Practice Makes Perfect

We’ve all heard the phrase “practice makes perfect,” right? When you want to get better at something, you practice. Want to learn how to play the piano? Practice. Want to learn how to ride a bike? Practice.

3320139093_3afa687cc9_o
Photo: t.spang

Our nervous systems are always changing and growing, in response to the things we do. Our brains form new connections all the time.

This is how we learn how to control our fingers, and move them more quickly and in more complicated patterns, when we practice the piano. It’s how we learn to balance when riding a bike. It becomes second nature.

460089931_0ec04cc73e_o
Photo: Alan Levine

Unfortunately, the same thing can happen when you give your nervous system enough changes to “practice” sending pain signals.

It sounds crazy, but basically, our nervous systems get better at sending these signals. It doesn’t happen automatically– you won’t develop central sensitization if you stub your toe, or get stung by a bee.

But it can happen if the pain goes on for long enough. For example, central sensitization can happen to someone who’s hurt their back, and has been in pain for a few months. The nervous system has been sending these pain signals over and over again, and now– just as if the person had been practicing the piano for a few months– the task has gotten easier.

Central sensitization can also occur in someone who has suffered a larger degree of trauma in a shorter time period. For example, it can happen to someone who’s had surgery– even if he or she was under anesthesia at the time.

This is because central sensitization involves nerves, your spinal cord, and the parts of your brain that process pain without conscious thought. They are still learning how to process all those pain signals, even if you are under anesthesia. (Of course, I’m not saying this will happen to everyone who has surgery. It is, however, a possibility).

In a nutshell, central sensitization means the central nervous system becomes more sensitive.

3374238783_1543d4fb0a_o.jpg
Photo: Maryl Gonzalez

There are many different ways in which central sensitization can manifest itself– the symptoms are not always the same from person to person.

The differences have to do with the person’s individual genetic makeup, what the original illness or injury was, and other health issues the person may have. (And yes– the person’s beliefs and perspective on pain can have an impact on how they respond to central sensitization, but they do not cause it. More on this later– I have very strong feelings on the subject!).

Invisible Illness

Scientific research has shown that central sensitization tends to be present in patients suffering from many of the conditions people generally refer to when they talk about “invisible illness.” These conditions include fibromyalgia, chronic regional pain syndrome, migraine, temporal-mandibular joint disorder, chronic pelvic pain, and irritable bowel syndrome.

Sometimes central sensitization is the root of the problem: for example, researchers now generally believe it to be the cause of fibromyalgia (please, please don’t believe the other things you read!).

In other cases, central sensitization is one of several contributing factors (still playing an important role, however). This is more likely to be the case in conditions such as irritable bowel syndrome, which can also be influenced by food intolerances/imbalances in gut bacteria, and temporal-mandibular joint disorder, which involves the physical pathology of the joint. In these cases, central sensitization perpetuates the problem and causes additional pain and discomfort, but is not necessarily the primary cause.

The Common Link

Because central sensitization is the common cause, it makes sense that so many patients with fibromyalgia also suffer from other “invisible illnesses.” For example, studies have shown that significant numbers of fibromyalgia sufferers also have irritable bowel syndrome.

I have so much more to say on this topic– more research to tell you about, the history of how it was discovered, as well as my own personal stories.

But…. as I have to keep reminding myself, I’m writing a blog, not a textbook… so all of that will have to come in future posts!

Citations:

I think it’s important to always post links to scientifically-valid articles when I talk about scientific/medical concepts.

Here is a great plain-English overview on central sensitization, written by Christina Lasich, M.D., for HealthCentral.net.

Next, an incredible overview of the science on central sensitization from Paul Ingraham of PainScience.com, which is an amazing website.

Ingraham’s article is actually a “jargon-to-English” summary of this important review of the scientific literature on central sensitization written by Clifford Woolf, the researcher who first discovered central sensitization back in 1983.

Finally, check out this equally important article from Muhammad Yunus, who has done vital work exploring the common links between central sensitization and the invisible illnesses (he calls them central sensitivity syndromes in this article).

I realize that the average reader might not be able to understand all of the scientific terms in these articles (I know I struggle), but I want you to know that legitimate and credible information is out there, and this is what it looks like.

A Note to My Readers:

I am always happy to answer any questions that you might have.  I think that all of this information is so important for us to be aware of as chronic pain sufferers!  It can really be life-changing, once you start to truly understand the roots of your condition.

I am always so curious to know what you think! Did you already know that central sensitization is believed to be the cause of fibromyalgia?  Does the common link between fibro and other invisible illnesses make sense to you? Let me know!

Chronic Pain, Sacroiliac Joint

An Update on my Sacroiliac Joint Saga, Part 2

In Part 1 of this series, I explained how the learning the “muscle energy technique” from my physical therapist Paula marked a turning point for me in my SI joint journey.

Above, I’m including a Youtube video of a physical therapist demonstrating this technique.  (I actually use a few different variations on the moves she does, but the principles behind it are exactly the same).

By using this approach regularly, I’ve not only been able to keep my SI joints better aligned, I’ve also developed more of an understanding of how the pain and sensations I feel correspond to the anatomical reality of what’s actually happening down there.

******

For me, this whole process has had to be very intellectual.  The movement patterns of the sacroiliac joints are some of the most complex in the body.  It wasn’t a matter of simply doing my exercises and getting stronger, because this joint is like a puzzle.

The SI joint reminds me of those old metal “tavern puzzles” they made in the Colonial days (http://www.tavernpuzzle.com/).  I don’t know if most of you would have ever seen one—I grew up in a town with a lot of Revolutionary War history, so I feel like I grew up playing with these things.

They are impossible to figure out by just looking—they’re too complex.  Instead you have to just start moving the different parts around, hoping the solution somehow becomes clear as you go along.  Half of the time, you move a piece and realize it actually just made things worse.

That’s been my experience with the SI joint.  It’s been so unpredictable, the things that will cause my SI’s to “slip” and lock. Walking on a flat, well-maintained trail at my favorite conservation land?  No big deal.  Going to a party and sitting on someone’s dilapidated old couch?  I sink in instantly, and my hips are locked again.

It doesn’t help that everyone’s SI joints are different.  Obviously we all have the same bones down there, but the shape of these bones and the way they fit together can vary widely from person to person.

For this reason, things that can work well for one person might not work at all for another.  I’ve tried techniques and exercises that other people have sworn by, and found they made me worse.

Only by learning, and developing a sense for exactly which types of motions and textures are going to create instability in my pelvis, have I been able to make sense of my own SI joints at all.

******

What about mind over matter? a lot of people have asked me.  Why can’t you just push through it, even if it hurts?

What I wish they could see is that it has been mind over matter, just not in the way they think.

There’s no pushing through an SI joint that has locked.  Anyone who’s experienced this will know what I mean.  It makes about as much sense as trying to use brute strength to unlock one of those tavern puzzles.

But you can use your mind to learn about the anatomy of the joint, and solve the puzzle that way.  Technically it’s still mind over matter, but in this variation it’s about being open, receptive, and mindful, rather than trying to harness sheer force of will.

To be continued in Part 3!

 

IMG_2118
Chronic Pain, Creative Writing, eating disorders, Favorites, Inspiration, My Story

I only understood myself…

A few days ago, I went for a walk around this beautiful historical estate that’s practically next to where I live now.

I’ve been making some big changes in my life recently, and some of them have been pretty difficult.  This park feels like home to me, so I went there to clear my head.

IMG_2118.JPG

I walked around for a little while, and then stopped to lie down on the grass.  It was so peaceful, in the warm sun.  I just wanted to take in the moment.

And then I looked up, and saw this view:

IMG_2147

Suddenly, it hit me.

I thought back to the days in high school, before I got compartment syndrome, when I would have been here running.

Rushing, rushing, hurrying, going as fast as I could.  A high-intensity day. Three miles, in as little time as I could.

Or maybe it would have been an endurance day, and I’d be purposely holding myself back for the first few miles, so that I could stretch my run out to six or seven.

I loved running.  I loved pushing myself, the freedom.

But you know what I wouldn’t have been doing?  Looking around me.

Looking up, specifically.

You can’t really look up when you’re running, at least not when you’re outside.  You have to look at the ground almost constantly, to make sure an awkwardly-placed tree root doesn’t leave you on crutches for the next two months.

IMG_2107

I loved running.  Everything about it– the thrill of pushing myself, the endorphin rush, the adventure of being outside.

But it was always a blur.   Even when I ran through my favorite places– and I knew some beautiful trails– I was never able to stop and enjoy it.   In my head, it was keep going, keep going.  You have to burn calories.  You’re going to get fat.

IMG_2299

I could never pause, never rest.  Even on Sundays, when my coaches made all of us promise not to run… I tried to go for walks, but I just wanted to be running.

I’d be in the middle of the most beautiful nature scenes, and all I’d be able to think about was how hungry I was.  And how fat I was going to get from not running that day, from the meager calories I’d decided to allow myself.

IMG_1984

Things are so different now.

I can’t do the same things with my body that I used to, but I can look up.

I can go to a beautiful place, without having to spend almost the entire time staring at the ground.  I can stop if I want to; I can pause.

Don’t get me wrong; I will always love running, and exercise in general.  I love a good endorphin buzz even more than I love coffee in the morning.

IMG_2015

But I exercise now because I want to; not because I’m afraid of what will happen if I take a day off.

It’s such a crazy feeling, and I don’t know if anyone who hasn’t been through it themselves can know what I mean.

I know what it’s like to have the ability to pause, because at one point I lost it.

IMG_2112

(Check her out, she’s an amazing writer!  http://sadeandriazabala.com/)

Chronic Pain, Creative Writing, Favorites, Inspiration, My Story

Telling the whole story

 

“Nobody tells this to people who are beginners, I wish someone told me. All of us who do creative work, we get into it because we have good taste. But there is this gap. For the first couple years you make stuff, it’s just not that good. It’s trying to be good, it has potential, but it’s not. But your taste, the thing that got you into the game, is still killer. And your taste is why your work disappoints you.

A lot of people never get past this phase, they quit. Most people I know who do interesting, creative work went through years of this. We know our work doesn’t have this special thing that we want it to have. We all go through this. And if you are just starting out or you are still in this phase, you gotta know its normal and the most important thing you can do is do a lot of work.

Put yourself on a deadline so that every week you will finish one story. It is only by going through a volume of work that you will close that gap, and your work will be as good as your ambitions. And I took longer to figure out how to do this than anyone I’ve ever met. It’s gonna take awhile. It’s normal to take awhile. You’ve just gotta fight your way through.” Ira Glass (thanks to Jo Malby for introducing me to this quote!).

My blog, as you can probably guess, means a lot to me.

I’ve had some really meaningful moments on here.  Times when someone has thanked me, so profoundly, for something I’ve written that’s helped them, and I feel like they really get what I’m trying to do here.  Or, in different way, the times when a person or an organization with a lot of followers has shared a link to my blog, and I end up getting hundreds of views and multiple re-shares in one day.  This, of course, doesn’t happen very often. But when it does, it’s an absolutely breathtaking feeling to know my words resonated with so many people.

But in a weird way, all these experiences have sort of made it harder to come on here and write from a place of vulnerability.  To admit that I don’t have it all figured out.  After all, I want to inspire people, not bum them out.  It’s supposed to be “Sunlight in Winter,” not “The Clouds of Winter.”  And the posts that people have really tended to gravitate to, for the most part, tend to be the posts where I talk about everything that I’ve learned.

But my roommate said something really helpful the other day.  She asked, “You know what? I think you should just not give a fuck.  When I read a piece of good writing, I don’t care whether someone thinks they have all the answers, or whether or not they are writing as a professional.  What I am impressed by is their truth– that they had the courage to put something so real, so raw down paper.  When someone tells you about the truth of their experience, it makes you feel that you are not alone.”

And she’s right.  When I think about the different pieces of writing that have resonated with me over the years, it’s not necessarily the straightfoward, informative, “This is what I know now” pieces that have stuck with me.  It’s the writer’s voice that makes the difference.

After all, telling your story is not about skipping ahead to the end, to the answers you found.  It is about how you got through.

So I want to tell you about all of it.  About how, in high school, I starved myself, convinced that if I didn’t I would become fat.  And then I ran myself into the ground– all to later realize it was based on an illusion, and that I wasn’t being healthy at all.

And then, at 17, the leg injury I got from running too much.  For years, I blamed myself, and even after the surgery was afraid to move at all, feeling like I couldn’t trust myself not to break my own body all over again.

And then, at 20, how my nervous system changed.  It was a physiological process, not a psychological one, but I didn’t know that at the time.

And then, a few lost years of thinking I was crazy– of everyone else thinking I was crazy too.  Of my nervous system spinning out of control, and telling me that everything was hurt; everything was damaged…

Until finally, I discovered the work of Neil Pearson (and, by extension, Lorimer Moseley and David Butler)…

And how it changed everything about how I think about myself.  Not just my pain, and my physical body, but myself as a person.  How I realized I didn’t have a psychological problem, and that everyone who told me I did wasn’t seeing clearly.

And now, five years later, I’ve developed a perspective that I am honestly quite proud of.  I’m not afraid of my body anymore.  Not afraid of myself anymore.

I can now hear in my own voice, at times, the same rationality that I used to cling to in the voices of my doctors and physical therapists.  Thanks to all the classes I’ve taken, and the reading I’ve done, and all the questions I’ve sometimes had to push various medical professionals to answer, I’ve actually managed to piece together a larger picture.  One in which I’m not constantly afraid, or thinking something’s wrong with me.

Now I can think objectively.  I can think scientifically.

But I’m not out of the woods yet.

It’s the story of my life that just I find the answers to one problem, another problem develops.   I’ve written before about my issues with the sacroiliac joint, and they have turned to be almost as mysterious and vexing as my chronic pain problem.

But I’m going to write about them.  I’m going to write about all of it.

It’s not just about finding the answers.  It’s about how you get there.

Chronic Pain

Treating Chronic Pain as a Two-Way Street

The nervous system has a system of checks and balances that ultimately determine how strong a pain signal is experienced by the individual. Different parts of the spinal cord and brain can play a role in either magnifying or weakening the pain signals traveling through them.

How a pain signal is amplified or dampened depends on a lot of factors (the person’s chemical makeup; genetics; personal history with accident and injury; emotions; context; whether or something else is happening at the moment that’s more important– aka why soldiers in battle can be shot and feel no pain).

One theory posits that chronic pain patients no longer have the same signal-weakening mechanisms that healthy individuals have. This is why they feel things, much more strongly, that might not really register to another person.

This is why, in many cases, I feel as though it’s misleading to talk about chronic pain as though it’s “in” the nervous system; that it’s something the nervous system is just coming up with on its own.

Instead, I think a lot of what chronic pain sufferers feel is pain signals which would be present in anyone– it’s just that in chronic pain sufferers, the pain signals are magnified, while other people might never register them consciously.

Now, this is not definitely not true all of the time.  Research has proven that physical injury/pathology is not necessary for pain.  After all, someone suffering from phantom limb pain where his leg used to be does not still have a leg to have a physical problem in!  But I do think it is possible that it’s the case, in chronic pain patients, more often than some authors realize.

So why don’t we try to stop those pain signals, which helping to perpetuate the chronic pain cycle, from starting in the first place?

Think about what it took to trigger the process of central sensitization in the first place. It’s usually caused by some kind of traumatic physical event. I think it’s a little idealistic to assume that people are always going to bounce back into mint condition three to six months after an injury/illness/surgery and not have any structural reasons at all for pain.

Yes, a tight muscle here or there might not be “painful” enough to consciously register to patients in the general population. But when we’re talking about central sensitization, the criteria for what is “significant” enough to become painful is pretty low.

And if the point is to get the person’s nervous system to calm down, wouldn’t it make sense to try to calm down the thing that’s happening at the very start of the whole signaling cascade? Why not approach the problem by dealing with both the end and the beginning of the cycle?

Now, I get why some treating professionals have downplayed the idea of approaching treatment from this angle. When you’re trying to convince a person that a muscle spasm or a trigger point isn’t “dangerous,” you don’t want to turn around and make it sound like you’re worried about it. If you alarm the person, you’re going to cause his or her nervous system to leap back into action, cranking his or her level of pain back up.

But what if it was possible to educate the patient on pain, and what is and isn’t dangerous, and explain that a muscle spasm isn’t really dangerous at all… while still acknowledging that he or she might be in less pain without the muscle spasm starting the cycle off in the first place?

************************

I’ve got a lot more thoughts on this subject, but I want to hear your thoughts.  Did you ever feel like you had a doctor, physical therapist or other medical professional who had great advice to give you about living with chronic pain, but didn’t seem to have much interest in looking for any potential physical reasons for your pain? I’m curious… let me know!

Chronic Pain

Everything in moderation, even the best things

This is a really well-written post on an important subject from The Sports Physio.

It is by a physiotherapist, intended for other physiotherapists, but it was also really meaningful to me as a patient. (For my readers in the US, physiotherapist means the same thing as physical therapist).

The author, Adam Meakins, talks about how many physiotherapists are now jumping on the “bandwagon” of viewing chronic pain as a function of a sensitized nervous system.

This is obviously a really important concept to be aware of.

My entire life changed for the better when I finally met a physical therapist who could explain to me that the pain I’d been feeling for so long, which all the other medical professionals were telling me was psychological, was actually due to changes in nervous system function.

But it is possible to take this idea too far—to be so excited about the fact that now you have a straightforward explanation for some patients’ complicated, ongoing pain that is also new and exciting—perhaps, in some cases, even “trendy”—that you overlook other things that could be going on.

Basically, before physical therapists knew anything about the phenomenon of central sensitization, they figured that all pain must be caused by a biomechanical or structural problem in the body. For example: the patient has flat feet and needs orthotics. The patient has a slight difference in leg length. The patient sprained his or her ankle and has scar tissue left over that must be massaged away.

However, as anyone who is educated on the complexities of chronic pain can tell you, there hasn’t always been sufficient evidence to back up these ideas. As Meakins explains,

“… thousands of therapists (are) realising that the traditional postural, structural biomechanical model just doesn’t seem hold up to scrutiny or to the evidence base anymore, and that pain isn’t just due to these factors.”

In the case of chronic pain patients, pain is often being perpetuated by a process within the nervous system, rather than a physical, structural problem. And you, as the treating professional, can achieve miraculous results by educating this person on how their nervous system is playing a role in maintaining their level of pain.

This is why many PT’s now speak somewhat disparagingly about the older, traditional “structural, biomechanical” model.

But when you are too quick to write off the idea that a patient might also have structural issues contributing to their level of pain, you might miss other factors that could be contributing to their pain.

This also happened to me. The PT that first taught me about pain and the nervous system—who, again, changed my entire life for the better—did take these ideas a little too far.

As much as he helped me figure out the mysterious pain that had been plaguing me, in one part of my body or another, for years, he also second-guessed my orthopedist and told me I didn’t have chondromalacia patella in my right knee. And this had overarching, years-long consequences for me, as I ended up injuring that knee to the point where the chondromalacia patella was excruciating and I could barely walk.

Along similar lines, Meakins tells the story of a patient who was diagnosed with Complex Regional Pain Syndrome, after breaking a leg. Her pain stretched on for months and months, and she was told “she would need extensive cognitive rehabilitation and medication for her pain.”

She later sought a second opinion, and it turned out she had physical damage (an osteochondral defect, specifically) that hadn’t healed.

I’ve also noticed a tendency for non-medical professionals to also jump on this bandwagon, without appreciating the other factors that can cause pain.

For example, I have certain members of my family who tend to assume whatever happens with my physical issues is somehow my fault. If I can’t do something, I haven’t tried hard enough. If I do something that makes the pain worse, I’m trying too hard.

Once these family members learned a little bit about how pain can be caused by changes in the nervous system, they started getting angry at me for “giving in.” For not “fighting” the pain hard enough (even though that is exactly what you’re NOT supposed to do when dealing with a problem of this sort. You’re actually supposed to be gentle with your nervous system to allow it to calm down).

And the articles they’ve read by medical professionals dismissing the biomechanical model have only given them ammunition to tell me I don’t have a real problem.

I think this is why I’ve been so reluctant to really talk about the specifics of my sacroiliac joint issue on this blog. I know that some of the pain, of course, is likely being magnified by my nervous system. And I’ve done so much reading on the workings of chronic pain, and the failures of the traditional structural mechanical model, that it’s made me a little bit hesitant to say hey, I think I really have a structural problem here.

But the truth is: I really do think it’s a structural problem. The irony is that it doesn’t actually hurt that much, not in the joint itself. What hurts is all the other areas that have to compensate when I’m limping. When I really stop and think about it, my problem doesn’t even feel like pain, in the truest sense of the word. It actually does feel like a structural problem.

So I’m going to stop apologizing for this problem, and stop doubting its veracity. None of the medical professionals I’ve seen at this point (which includes three physiatrists, seven physical therapists, and four chiropractors) have actually told me I don’t have a problem.

I think we all need to take a step back and realize that while the recent advances in pain science truly have the potential to change patients’ lives for the better, everything– and I do mean everything– is best in moderation.

Chronic Pain, Sacroiliac Joint

My saga with the sacroiliac joint

Hi everyone!  If you’ve found this post, you’re probably looking for answers regarding your own SI joint issues.  For some reason, this is the post Google brings everyone to, probably because it’s the first one I wrote on the subject and it’s been up for the longest.

However…

Although I’m proud of everything I’ve written, this particular post is not the best post to help you find answers!  I’ve come a long way since I wrote this, and I think I have some helpful answers to share.

I’m leaving this post up because I think it does a good job of capturing the emotions and confusion I felt when I had first developed my injury.  However, things are definitely not as bleak as they seemed, and help is available.   I strongly urge you to check out my more recent posts where I share the answers I found!

***

Original post from May 2014:

So, let me start out by saying that I feel totally crazy writing some of this.

Most of what I write about has a good deal of scientific research to back it up. I take this very seriously, because the internet can be a such cesspool of conspiracy theory and misinformation.  The last thing I would ever want to do is be the kind of blogger who adds to that.

But I don’t really have many scientific facts to back up this post with. And it’s not for lack of trying.

Since this ordeal has started, I’ve seen one orthopedist, five physical therapists, and two physiatrists (the word is confusing, but their specialty is Physical Medicine & Rehabilitation, not Psychiatry).

I’ve also spent a long time trying to find information about the sacroiliac joint online. Google searches turn up next to nothing. And searching the publicly accessible scientific databases such as the National Institutes of Health only turns up articles about people who seem to have different problems than me.

So I’m just going to write this based on my own experience.

**************************************

This post picks up after where I left off in “How a physical therapist helped me through my lowest point, Part 8.”  In that post, I talked about how 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.

After a few months, things had gone from bad to worse and I was limping almost all of the time.

And, after weeks of limping, came the first time one of my sacroiliac joints locked up.

I was walking along, just minding my own business, when I felt this strange sinking feeling in the back of my left hip. The sinking didn’t hurt, but it was followed immediately by a “catching.” And the catching did hurt.

And once whatever it was that was caught had caught, I could barely lift my leg. Like, I could barely get it off the ground high enough to put it down in front of me. Going up stairs normally, even small ones, was out of the question, because I literally could not get my left leg high enough to place it on the next step, let alone put any weight on it once it was up there.

I had been seeing a chiropractor for a while at that point, because all the exercises I’d been doing in PT had made my lower back to start to hurt.

I went in that day, and he told me right away that it was my sacroiliac joint. I’d only heard of this joint in passing before—just one more word on the diagram in my anatomy and physiology class. It hadn’t even seemed like an important enough joint for us to talk about it at all in class.

It didn’t take him much time at all to click away with his activator and get the joint to fall back into place. I was able to walk out of the office normally, although it was a day or two before I was brave enough to try using that leg normally on stairs.

********************************

A few weeks later, the same thing happened on the right side. I was getting ready for a quick chiropractor visit before I had to drive to class that night when I experienced the same sinking and catching feeling. I felt as though I had a stilt under one leg, although which leg felt like it had the stilt under it kept changing.

I rushed off to the chiropractor, only to have the secretary tell me he was running late. I realized I didn’t have time to wait for him and still make it to class in time, so I burst into tears in the waiting room. It was pretty embarrassing.

Luckily, he came out from the treatment room he’d been in and saw me in tears, so he fit me in.

*************************

This was the beginning of the absolutely crazy pattern I’ve been caught in for the past few years.

I feel crazy, because I’ve fallen into the exact kind of trap that so many people with chronic health problems fall into, and it usually isn’t productive.

I’ve come to count on one type of health professional to help me—and it’s not one that is generally well-respected by mainstream medicine. And I’m not getting the same explanation from him that I’ve gotten from all the others.

But in this case, the thing is… I didn’t really get an explanation at all from any of the others.

And I don’t feel like I was asking them anything super outlandish. Again, this is a joint you’ll find on a basic diagram of the skeletal system. Like, anatomy 101.

I wasn’t asking them to give me their opinion on specific acupuncture points, or the merits of reflexology. This joint is something they’re supposed to be able to help people with.

But it seems like most of the literature and treatments that I found in my attempts to find scientific information with have to do with a sacroiliac joint that is painful. Or inflamed. Or “unstable,” which is the term that means the ligaments that are supposed to hold it in place are too stretched out to do their job.

I couldn’t find anything about what to when the sacroiliac joint becomes stuck.

The ilium, which is the very back of the hip bone, is supposed to line up perfectly evenly with the sacrum, which is the base of your spine. In my case, assuming my chiropractor is correct, my ilium is getting stuck too far back, behind the sacrum.

All of the papers I read, after describing problems that I didn’t sound like mine, concluded with the phrase “further research is needed.”  It was clear that the authors didn’t feel like their results were definitive enough to make a clear pronouncement about the sacroiliac joint, one way or another.

**************************************

I’ve spent so much time living with this problem, I can feel it the second my SI joint starts to lock up.

Once in a while it will turn out to be a false alarm– I’ll move in a way that sets off the old familiar pain, and I’ll freak out, but an hour, I’m still able to walk normally.

But all too often, it’s not a false alarm– I feel the catching sensation, and then no matter what I do, I’ll be limping for days, until I finally give up and go back to the chiropractor.

*****************************************

So this is the trap I’m in. I still go to a chiropractor several times a month.  Once my hip has become caught in that peculiar way, a chiropractic adjustment is the only thing I’ve found that can make it become unstuck.

Meanwhile, I’m reading all these other blogs by people I really respect, who’ve turned out to be right about a lot of other things, who all say that chiropractors are at best misguided, and at worst, con artists.

I’m still waiting to find out that I’ve been completely wrong about the whole thing. That maybe my chiropractor was wrong, and that I didn’t feel exactly what I’ve been feeling.

That maybe the “sticking” feeling isn’t always coming from the joint itself.  That maybe my muscles are just tight, and something about the chiropractic adjustment is loosening them.

That’s why, from time to time, I check in with other medical professionals. But surprisingly, none of the people I saw told me to stay away from chiropractors. Both of the physiatrists I saw actually expressed admiration for someone who had enough expertise to be able to manipulate a joint that was, to them, still quite mysterious.

**********************************

The only helpful article I’ve found about the sacroiliac joint, EVER, is this one by Roger Cole.

He explains that in many people, the sacroiliac joint becomes fused as they age. This is particularly true for men, starting around age 30. By 50, almost all men’s sacroiliac joints have become fused.

This means that the two bones, the sacrum and the ilium, fuse and become one bone.  The joint no longer moves at all.

But in women, particularly younger women, as well as people who’ve retained a lot of flexibility through yoga (which, he points out, might not actually be a good thing) this joint tends to remain unfused.

This is one reason why the medical profession might not have a good handle on this joint. Up until recently, it was pretty much only men studying anatomy, contributing to medical textbooks, and practicing medicine. And by the time they’ve actually become successful doctors and surgeons, these men’s own sacroiliac joints have completely fused.

And even for women like me, it seems like most of us need to have some kind of precipitating event to have issues with this joint.   My web research tells me, at least anecdotally, that it seems to most commonly affect women during and after pregnancy.

I don’t think any of my readers will be too surprised that a problem that disproportionately affects women might not have received enough attention from the medical establishment.

***********************************

So basically, my plan now is just get stronger.

It’s actually my main chiropractor, Dr. K., who first convinced me to join a pool and stop working out land.

For months, after I had first come to him with a locked up sacroiliac joint, he started telling me that getting stronger would be the only way I’d get better, and stop this problem from happening.

I had all kinds of reasons why I didn’t want to join a pool, but in retrospect, this problem would not have gone on for nearly as long if I’d just stopped the land exercise and joined a pool the minute my knees started hurting.

So for those who are inclined to think of chiropractors as con artists, Dr. K. really got on my case about joining a pool.  He made it clear to me that his adjustments would only help in the short-term, but in the long run I was going to have to get stronger.  And that the only way he saw me doing that was in water.

Over time, he got progressively more emphatic:

“Just go online and see what gyms around here have pools.”

“Just make one phone call about joining.”

“Just go in person and check out one pool.”

Finally I did, and I’m still kicking myself (or I would be, if my joints could move) for not doing it sooner.

*****************************************

Since I’ve been working out in water for about a year and a half now, I am a million times better.  I haven’t completely stopped my SI joints from “sticking,” but now that I am stronger, they don’t “stick” quite as badly.  It also just doesn’t bother me quite as much when they do, because I have more strength in other areas of my body to compensate with.

So I am not out of the woods yet, but at least I feel like I am learning.

As I’ve promised in previous posts, I plan to be writing more about the specifics of my exercise program, as well as the exercise science concepts that I think are really useful for anyone with chronic pain and biomechanical dysfunction.

Stay tuned!

***

Again, this is an old post from May 2014, and it is NOT my most informative post on the subject!  I’ve come so far since then and learned so much, and I have so much more to say about the anatomy of the SI joint and what it took for me to heal!  Please be sure to check out my more up-to-date posts on the subject.