Central Sensitization, Chronic Pain, Favorites, Fibromyalgia, Nervous System, Pain Neurophysiology Education, Pain Science

How Clifford Woolf discovered central sensitization (and why you shouldn’t blame yourself for chronic pain)

You’ve probably noticed that my blog is all about central sensitization— the process through which the central nervous system can change over time and become more sensitive to pain.

Personally, I find learning about central sensitization to be empowering.  I spent years trying to find an answer for the pain and other symptoms I felt, only to be told by various medical professionals that my problems were in my head, the possible result of depression or anxiety.

I knew, deep down, that this just wasn’t true.  It’s not that I was unwilling to believe that mental health factors could play a role.  But it just didn’t resonate. I didn’t feel anxious or depressed.  I felt like I was in pain, and wanted it to stop.

That’s why, when I first heard the phrase central sensitization and looked up what it meant, I was so struck.  Because there was a way to explain why my nervous system was acting funny, and causing me to feel things other people didn’t feel, that wasn’t based on my mental health.

So.  How do we know about central sensitization?

A neuroscientist named Clifford Woolf discovered the process of central sensitization back in the early 1980’s.  In 1983, he published a well-known and often-cited letter to the respected scientific journal Nature outlining his theory, entitled “Evidence for a central component of post-injury pain hypersensitivity.”

Although the scientific community didn’t quite accept Woolf’s ideas right away, ultimately he ended up sparking a new wave of research, and his theory of central sensitization is generally accepted today (although much more work still needs to be done).

Basically Woolf ended up discovering central sensitization more or less by accident, in the process of researching something else.

(Now, I’m not a huge fan of animal research, so I don’t love what I’m about to describe to you.  But I am grateful for the results, so for the sake of understanding, here we go).

Woolf was studying the “withdrawal reflex” that caused the rats to jerk their paws away from a painful stimulus.  He tested them over and over again, over the course of a day, and he noticed that he started to get different results at the end of the day.

After a long day of testing, the same rats were much jumpier.  It became much easier to trigger their withdrawal reflex.  They would jerk their paws away even at things that shouldn’t have been painful, or wouldn’t have caused them to react that way at the start of the day.

Woolf realized he was seeing completely different behavior in the same rats, and under the exact same conditions.  Only one thing had changed: their nervous systems had been “practicing” the withdrawal reflex all day long, and were now responding to stimuli differently.  He hypothesized that somehow, the central nervous system had changed to become more responsive to pain, after exposure to repeated stress.

Woolf’s theory was pretty revolutionary at the time. Generally speaking, the scientific community believed the central nervous system always processed pain the exact same way, like a simple machine performing the same task over and over.  Woolf’s discovery turned all of that on its head, by suggesting that actually, the central nervous system can be changed and shaped by its experiences.

His ideas were not widely accepted right away, but his work, along with that of others such as Muhammad Yunus, has now formed the basis for a wide body of research on central sensitization and chronic pain that’s going on today.

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We do still have a long way to go.  Much more research is needed, not to mention new treatments to be based on that research.

However, the reason I wanted to go into detail and describe the rat experiment for you guys is this:

If you have chronic pain/fibromyalgia, people are going to tell you it’s in your head.  Unfortunately, even sometimes people who have a passing understanding of central sensitization will imply tell you it’s in your head.  In my experience, people can understand the concept of the nervous system working differently in principle, yet still think it must somehow be related to mental health.

So this is what I want you to know: central sensitization happens in rats.

Your thoughts, beliefs, and fears about pain, and your mood– those can all play a role in your experience of central sensitization/chronic pain.

But those things don’t cause central sensitization, any more than they did in the rats in Clifford Woolf’s lab.

Remember that the next time you feel someone isn’t taking you seriously.  You can’t create your whole experience of pain by “overthinking” any more than a rat can overthink something.

In some ways, your nervous system is its own being.  There are aspects of your nervous system which have way more in common with a rat nervous system than with your conscious, human mind.  (I know, think about that!  That’s evolution for ya).

So if you have chronic pain, don’t blame yourself.  Don’t scold yourself for overthinking; don’t wonder if you’re crazy.  Your body is just doing what it was always going to do, in response to whatever stress/pain/injury you experienced.

There are ways to move forward– promising ways, which I talk about on this blog.

But to me, the first step is to stop blaming yourself.   You are okay.  You didn’t cause your own central sensitization, any more than the rats caused what Clifford Woolf observed in the lab.

Chronic Pain, Fibromyalgia

How I’ve (Mostly) Made Sense of My Issues

Of course, I’m not saying everything is perfect now.  But I’m definitely way better off than I was a few years ago, and a lot of that has to do with how I’ve changed my perspective on pain.

Two important ways in which my thinking changed:

1) Understanding that not all pain comes from a physical injury.  This helps cut down on the cycle of fear. 

We grow up thinking that pain must automatically mean we are injured.  However, pain is actually a lot more complicated this, especially in the case of someone whose body has been through some sort of trauma.

Pain is the body’s protective mechanism, and sometimes it can go a little bit haywire and “overreact,” causing you to feel more pain than you used to.

(I have written a lot about this in past posts, so I am not going to focus on it as much in this one.  But if you are new to my blog, definitely check out my page on “Calming Your Nervous System” for more!).

2) Learning as much as I can about the body.  

When you are caught in a cycle of chronic pain, when your body’s “alarm bells” seem to be constantly ringing, knowing more about the body can help you turn down the signal.

Pain is a dynamic interplay between the body and the brain.  The body can send signals up to the brain, to determine if action needs to be taken.  The brain can also send signals down to the body asking for more information, if it wonders if the body has been hurt.

When you have a chronic condition, knowing more about your own body can help turn down some of those alarm bells when they start ringing.

Here is an example from my own life:

A few years ago, when I first began to have knee issues, there was one night where I experienced extreme, stabbing pain in one leg.  The pain didn’t make any sense to me—it ran in a diagonal line from the outside of my upper thigh, across my leg, to the inside of my knee.

At the time it really freaked me out.  I had no idea what could cause pain to run in such a diagonal pattern.  Since it wasn’t a muscle, I thought, it must be some kind of serious problem involving a nerve.  Maybe it was even a pinched nerve in my lower back.  I burst into tears, took a ton of Advil, and waited desperately for my next physical therapy appointment.

Well, it turned out that there is muscle that runs diagonally across the knee, along the exact same path that the pain ran that night.

I was simply experiencing a spasm of the sartorius muscle, which runs from the outer thigh to the inner knee.

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Photo credit: Wikipedia. http://en.wikipedia.org/wiki/Sartorius_muscle

If I had known this at the time, I probably would have been able to avoid freaking out so much.

Just because the pain is severe, it doesn’t necessarily mean the condition is severe.

A muscle spasm like that one can be extremely painful, but it isn’t really “dangerous.”  It’s just a sign that the muscle is overworked and you need to rest it and do some stretches.

I know that now, and I’ve definitely had muscle spasms since then.  But none of them have set off the same pain “alarm” bells, and I’m sure that part of that is because, on some level, my body has made peace with the idea of muscles being overworked and needing to rest.  I’m not talking about a conscious process.  It’s something that probably happens below the level of conscious thought.

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Photo credit: Zillafag http://www.flickr.com/photos/zillafag/

Of course, my life isn’t perfect now.  I still have some physical issues (specifically, my ongoing saga with the sacroiliac joint).

But I just don’t seem to have the same overblown, five-alarm-fire response to pain that I used to have.  I think my physical issues are probably worse now, in an objective sense, thanks to the sacroiliac issues that I’ve had for the past two years.

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My nervous system, a few years ago. Thanks to songglod http://www.flickr.com/photos/22643708@N06/

But I am actually in less pain than I was a few years ago, where I went from doctor to doctor, only to be told that nothing was wrong, and it’s largely because I helped to calm my nervous system down.

A calmer nervous system

It’s not that I’ve learned to block out pain, or anything crazy like that.  I’m not saying I have no pain.  I’m just saying that now, I have the pain response of a normal person (or close to it) rather than the extreme, overblown pain response of a few years ago.

Back then, my nervous system was giving me a lot of very “loud” input, and I didn’t have any way of determining which signals might be okay to “tune out.”

There’s a big difference between trying to ignore pain that you think could be a sign of something dangerous happening in your body, and deciding in a calm, rational manner that you are pretty sure you know what’s causing the pain, and that it is not a sign of immediate danger.

Pain is there to protect you and get you to change your course of action when your nervous system thinks you might be in trouble.  In that case, trying to push through the pain and going about your business as usual will only make the pain worse.

But pausing and actually focusing on the pain, deciding you have a reasonable guess as to what’s causing it, and what to do to make it better, can make the pain go quiet.  Or, at least, quieter.  But you have to really believe that you are safe, for this to work.  You can’t think there might be some hidden cause your doctors have missed, that part of your body might be falling apart.

And it’s ok if that’s what you do think.  It is certainly a valid position to be in.  Sometimes there is no simple answer.  I am not telling you you should be able to use the thought process I’m describing here all the time, or implying that there’s something “wrong” with you if you can’t talk yourself out of being scared.  That is the exact opposite of what I’m saying.

I’m just telling you that, the more you know about the body in an objective sense, the easier it will be for you to make sense out of it when the body gives you subjective input.   In my own life, the more I learned about my own body, the less scary pain became to me, which in turn meant there were fewer alarm bells going off.

It isn’t the answer to everything, but learning about these subjects might be the answer to some things.

Central Sensitization, Chronic Pain, Creative Writing, Favorites, Fibromyalgia, My Story

How a physical therapist helped me through my lowest point, Part 5

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**If you are new to my blog and would like to start at the beginning of this series, click here.**

In some ways, the “cure” wasn’t a magic bullet.  I still do have some pain, and in some ways my life hasn’t really changed.

But in other ways, it was like magic.  Finally, I had an answer for my pain—a real answer.

For so long, I’d been told by various doctors and physical therapists that the answer had something to do with my mental health.  That I was depressed, or anxious, or afraid to move.  That “something bad had happened to me a really long time ago,” and my body was using pain to express my unconscious thoughts about it.

Perhaps there was a grain of truth in some of those things. I hadn’t exactly had a happy adolescence, and I was deeply afraid of the kind of injuries that had forced me to stop running.   I didn’t necessarily identify with the person in the picture they were painting—I didn’t consider myself to be particularly depressed, or troubled.  But these issues loomed large in my past, so it wasn’t too much of a stretch to imagine that maybe they were still affecting me more than I consciously realized.

I had wasted years, since the first person told me at nineteen that he didn’t think there was a concrete medical reason for my pain, wondering if psychological issues were to blame.  I was never completely on board with this theory, but I also didn’t have a better explanation.

For years, every health professional I saw would eventually tell me he or she didn’t understand why I was in so much pain.  “You have some issues with muscle tightness and posture” they would tell me.  “It’s possible you still have scar tissue left over from your surgery.  But I see other patients with these issues, and you are in more pain than all of them.”

Then each of them would proceed to give me some kind of advice.  Most of them were kind, and very well-meaning.  “I think maybe you should talk to someone about this.  I’m not really qualified.  Maybe you should see someone who has been trained how to help people with depression, like a psychologist.”

I called this conversation “The Talk.”  Every time I saw a new doctor or physical therapist, I knew it would come up eventually.

Sometimes I would be upfront about it at the first appointment: “I’ve been told there might be psychological reasons for why I’m in so much pain.” Other times, I would experiment by not saying anything, seeing how long it took for the person to reach this conclusion on his or her own.  Sooner or later, almost everyone did.

I was in college for most of these years, and as a result, I had access to hundreds of well-respected academic databases requiring a paid subscription.

I spent hours pouring over the literature on chronic pain and depression; anxiety and depression; anxiety and chronic pain. Fibromyalgia and chronic pain.  Somatization disorder.  Conversion disorder.  Which therapeutic interventions had been shown to help.

All of it left me feeling like shit.

I just didn’t identify with the kinds of mental health issues these articles would discuss.   In a way, maybe I would have felt more optimistic reading these articles if I actually considered depression to be one of my cardinal issues.

Now, let me be clear: there is nothing wrong with being depressed, or having any other mental health issues.  I have several close friends with mental health issues, who rely on psychiatric medication to live their lives.  There is nothing wrong with that.  There is no shame in it.  Mine is not the story of someone who really is depressed, but just doesn’t want to admit it.

My problem wasn’t depression, it was pain.  Perhaps I would have felt more optimistic reading these articles if I actually felt I had clear-cut case of depression, which might improve with medication and therapy.

I had met with therapists from time to time, over the years.  The medical professionals I would see kept sending me to various people, and, agreeable young woman that I was, I would always agree to go and meet the next person.

But we never got anywhere.  Sometimes the therapist and I would agree that I might have a mild case of depression, but we never had the kind of huge psychological “breakthrough” that the doctor or physical therapist who had sent me there had hoped I would have.   Often times in therapy, the conversation would turn back to pain, and the therapist’s own experience with back or neck pain.   In the end, the therapist would usually just refer me back to physical therapy.

Over the years, whenever I wasn’t too occupied with coursework, I would think about depression and anxiety.  I wondered if it was possible that I was more troubled than I actually felt.

In retrospect, this was a completely pointless use of time, and of course it made me feel worse.  How can it be a good thing to insist to someone who doesn’t feel depressed that she spend time talking to other people about whether or not she might be depressed?  Why dwell on hypothetical negative emotions when you don’t have to?

But there was really no talking to some of these doctors.  Even the most sympathetic could not be swayed.  It was practically at the level of religious belief for some of them: if there is no concrete medical reason for a patient’s pain, then she must have mental health issues.  There was just no way around it.

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That is why the Neil Pearson lectures blew my mind the first time I watched them.   It made so much sense right away—how could anyone have a discussion about pain without discussing the functions of the nervous system itself?  All these doctors I had seen had focused only one aspect of the nervous system: the neurotransmitters of the brain.

But there were other aspects of the nervous system that were worth discussing.    The peripheral nerves, the things that sense mechanical damage, temperature, and chemical signals.  The dorsal horn of the spinal cord, where sensory information enters and travels up to the brain.  The relationship between the brain and the spinal cord, and how, somewhere along the way, your body can decide whether it needs to know more about what’s happening in your body, or whether it’s safe to tune those signals out.

Nowhere in the lectures did Neil bring up the subject of depression.  Not, I am sure, because he had never learned anything about the relationship between depression and chronic pain.  But because there was a better explanation out there, one that did not require a diagnosis of ill mental health.

What had happened to me wasn’t some freak occurrence that had happened only to me, as a result of some psychological trauma I couldn’t even remember.  It was, instead, the result of normal processes of the nervous system being altered by physical trauma, which of course I could remember, and which made sense to me.

How was it possible that none of the doctors or physical therapists I had seen before had known this information?  I wish I knew.  I don’t really have a good explanation, except for that all of the decent research on pain science is very recent, whereas psychologists have been studying depression and chronic pain for over a century.   Some of the theories people were using to diagnose me, I realized, hadn’t changed very much since the days of Sigmund Freud.  It seemed that many of the research studies on depression and chronic pain had been based off of some of these same assumptions.

I am really hopeful that in ten to twenty years, the “conventional wisdom” about the causes of chronic pain will be a bit more modern.  I really hope that, someday, the kinds of things I learned in physical therapy will be taught, not as optional continuing education courses, but as part of the required curriculum in medical, physical therapy, and occupational therapy schools.

To be continued in Part 6!

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Top Photograph: Don’t worry, I don’t understand everything that’s going in this photograph either.  But it seems a hell of a lot more scientific than simply making the assumption that a patient is depressed.  Thanks go to Open Michigan.

Second Photograph: I love when I randomly find awesome things like this on Flickr.  We should all trust in our nervous systems. Thanks go to Cliph for the image.

Chronic Pain, Fibromyalgia

How a physical therapist helped me through my lowest point: Part Four

This is the fourth part in a series about an amazing new approach to physical therapy for chronic pain patients.  To start from the beginning, check out Part One, Two, and Three.

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For the first few visits, all Tim and I did was talk.  He didn’t have me in the gym doing exercises like all the other patients I walked by on the way in.  Instead, we sat in a quiet area and talked about what I had learned from Neil Pearson’s lectures.

What I learned is that pain is so much more complicated than we think.  When I first learned about the nervous system in high school biology, I was taught that nerve impulses travel through the spinal cord to the brain, where they are interpreted.

simple nervous system

This is a very simple model, and on a basic level it’s true.  That is how nerve impulses get to the brain.  But when it comes to the experience of pain, there are many additional factors.

Normally we think about the nervous system as a one way street, where signals are only travelling to the brain. But what I learned from Tim is that the experience of pain is a lot more complicated.  Our brains are constantly evaluating input from our nervous system, trying to sort out which signals are important for us to know about, and which aren’t.

Our brains are filtering our experiences all the time, determining what is and what isn’t important for us to know about.  After all, it wouldn’t make sense for us to be aware, on a conscious level, of every little thing that’s going on in our bodies.  We don’t need to feel, at all times, the sensation of clothing on our backs.  We don’t need to wake up out of a deep sleep just because there is a blanket touching our legs.  Our brains filter out information all the time, so that we can focus on more important things.

On the other side of this equation, the brain can actually “turn up the signal” on something it thinks we need to know about.  If a part of your body hurts and you try to ignore the pain and go about business as usual, your brain will make that pain louder.  It isn’t doing that to be annoying; it’s trying to protect you.

Lorimer Moseley tells a revealing story about the time he was walking in a nature preserve when a stick brushed against his ankle.  He had once been bitten by a poisonous snake in that same nature preserve, also on his ankle.  He freaked out and fell to the ground, writhing in excruciating pain.  He told his friends to call for help, thinking he needed to get to a hospital as soon as possible.

A few moments later he looked at his ankle and realized there were no bite marks.  There was, instead, a stick lying on the ground next to him with a sharp point.  He was then faced with the awkward task of telling his friends he was wrong, that there was no snake, that he’d freaked out over nothing.

This is how the nervous system works.  It is not meant to be “accurate.”  It is meant to protect us.

When Moseley’s nervous system felt the stick scrape his skin, it knew that the last time it felt those sensations, there had been great danger.  It also knew that not only was he outside, but he was walking in the exact same nature preserve where that same danger lurked.  His nervous system decided to tell him about the dangerous thing that had just happened to his ankle, and it told him about it loudly.  This is how the nervous system works; it decides how much danger we are in based not only on physical sensations but also on context.

Normally when we notice these little idiosyncracies of the nervous system, we are embarrassed.   These little errors in judgment can make it seem like we’re crazy, or overly anxious or neurotic.  But this is how the nervous system works.  It is not meant to be “accurate,” it is meant to protect us.   Even when our nervous system doesn’t have the whole story, it fills in blanks as much as possible, taking our fears and beliefs about the situation into account.

In people with chronic pain, the body’s protective response has gone haywire.  It’s as though the nervous system’s threshold for action has been lowered, and things that didn’t seem dangerous before now seem very dangerous.

It’s like we’re Lorimer Moseley walking through the nature preserve, all the time.  The difference is that Moseley’s case was a singular event based on coincidence: the stick brushed up against him in the same place that the snake had bit him, and he was walking in the exact same park where he had encountered the snake before.  While Moseley’s experience had a concrete end, every day chronic pain patients encounter “sticks” that our bodies interpret as “snake bites.”

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The good news is that, because the nervous system takes our conscious beliefs about pain into account when making judgments, we can actually affect how it reacts to various stimuli.  (I want to be very clear here: we do not cause chronic pain with our thoughts and beliefs.  This is an oversimplification, and it’s also insulting).  But the nervous system does pay attention to context when deciding how dangerous something is.

In his lectures, Neil Pearson says that when your pain starts to get worse, you should ask yourself “Is this really dangerous?”  An increase in pain is a sign that your nervous system has decided whatever you’re doing is dangerous.  But is that really the case?  If you’ve been living with pain for a long time, it might not be.

This is where your conscious thoughts and beliefs can play a role in breaking the cycle of pain.

I had lived with pain for so long that my view of what my body could and couldn’t do had gotten very warped.  I felt pain every time I tried to walk, or lift something, or go up and down stairs.  I thought my body was weak, that there was something fundamentally wrong with it, and every time I pushed myself it seemed to get worse.

Tim helped me to recognize that the pain I felt was not necessarily an accurate barometer for what was wrong in my body.  The reason I had a setback every time I exerted myself, he said, had more to do with my nervous system freaking out than the fact that I had actually pushed my healthy twenty-five year-old body to its limits.  When my body began to hurt, I was to say to myself, “There’s my nervous system again.  Freaking out.  But that doesn’t mean anything is wrong in my body.”

Tim and I talked a lot about how the body works, and how I wasn’t going to hurt my back, or my legs, or my ankle just by doing basic things.  Because one of my major complaints was back pain, we talked about the anatomy of the back, and how my MRI showed I didn’t have any serious pathology.  Tim promised me that my body was so much more capable than I thought it was, and that once I could help my nervous system calm down a little bit, I would see that.

We also talked about what kinds of things would produce pain in a person whose nervous system wasn’t freaking out.  It honestly really helped me to have a trained physical therapist to bounce ideas off of.  I trusted Tim.  If he told me the pain I felt was likely coming from my freaking-out nervous system, rather than any physical damage, I believed him.

We talked about my leg surgery several years before, and how I was afraid my compartment syndrome was going to come back if I pushed my legs too much.  We sat down and had a rational discussion about this; how unlikely it was, but what the worst case scenario really would be if it came back.  This helped to reduce some of my fear, and give back a sense of control.

We also talked about my ankle, which I had sprained a few months earlier.  It still hurt a lot of the time, and I had a lot of trouble walking and driving.  Tim explained that I wasn’t going to re-sprain my ankle just by performing normal activities.  Since it had been a few months, he said, the majority of the healing had already occurred.  As long as I kept my ankle within the normal range of motion, I wouldn’t be doing anything to make the sprain worse.

This actually made a striking difference in the amount of pain I felt in my ankle.   My nervous system had been interpreting the sensations in my ankle as very dangerous, and as a result it was very painful.  But once my brain understood that my ankle wasn’t in any real danger anymore, my nervous system no longer saw the need to tell me about it all the time. Over the course of the next few weeks, the pain in my ankle gradually melted away.

It’s almost embarrassing to admit something like this– that my ankle, which had been bothering me for months, stopped hurting as soon as someone explained to me that it wasn’t really dangerous.  But it shouldn’t be embarrassing.  This is how our nervous systems work: they take into account both physical signals as well as our mental interpretation of events.

If you’ve undergone the process of central sensitization, your nerves, spinal cord, and brain have changed in ways that cause you to be more sensitive to pain.  Scientists don’t yet know whether or not these physical changes are actually reversible.  But the good news is that whether or not you can undo the effects of central sensitization, you can still break the cycle of pain by changing how you react to pain on a conscious level.

Continued in Part 5.

**The top picture was taken in the Australian Outback, which is where many of Lorimer Moseley’s stories take place.  Published by Mark Veerhart under a Creative Commons license.**

**Mulberry sticks picture courtesy of JodiGreen**

Chronic Pain, Fibromyalgia

How a physical therapist helped me through my lowest point, Part Two

This is the second part in a series about a life-changing experience I had in physical therapy. To start from the beginning, check out Part One.

I couldn’t believe what I was hearing.  I think Tim expected me to be disappointed, or maybe even to contradict him.  After all, he basically just told this patient who had been in pain for months, thinking that she was injured, that there wasn’t as much “wrong” with her body has she thought.

But I was excited.  My curiousity was piqued.

After all, I knew there was something wrong with me that no one had figured out yet.  I could tell that my body wasn’t functioning normally.  I mean, I was twenty-five, and in more pain than my eighty-six year old grandmother.  I was so happy to have someone propose a theory to me that sounded as though it made scientific sense, and didn’t ultimately hinge upon my “being depressed” or “focusing on the pain too much” (both of which were things I had been hearing from healthcare professionals for years).

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Tim explained that he and all of his coworkers had attended an advanced training together on recent developments in pain science.  The way he said “pain science” was very specific; it sounded different than what doctors usually meant when they referred to “pain management.”

Tim explained that the training had taught him to view pain totally differently; that he and his colleagues had learned all sorts of things they hadn’t learned in physical therapy school.  After the training, he’d realized that much of what he’d learned about pain was wrong, that most physical therapists and doctors had it wrong.

What he learned is that sometimes, in people whose bodies have been through some kind of painful or traumatic physical ordeal, the nervous system can starts working differently.  It start overreacting to different stimuli, and cause the person to feel pain when he or she ordinarily wouldn’t.

“It’s as though your body has decided that everything is dangerous,” he said.  “And that makes sense, after everything you’ve been through.  Your body has been through so much that it’s like it thinks it’s made of glass, that even the slightest touch could break it.  But you’re actually much tougher than that, and what we’re going to do is help your nervous system remember that you aren’t made of glass.”

I was excited and confused at the same time.  Tim told me not to worry if it didn’t make sense right away, that it might take a few appointments for me to really understand.

The first thing I had to do, he said, was to go home and watch three online lectures, given by the same instructor who’d led his training.  He urged me, in fact, to watch them more than once, to really pour over them and get everything out of them that I could.  But I had to promise to watch each one at least once before our next appointment.

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If you’re a longtime reader of my blog, you’ve probably guessed that the person who gave these online lectures is Neil Pearson.

I really can’t say enough good things about his work.

Once I went home and started playing these lectures on the computer, things really began to click.  I have to admit, it was hard to stay focused, but not because it was boring.  Instead, it was because every new thing Neil said made me think of my past.  All of these experiences where I’d felt like a big weirdo, where I’d been too embarrassed to let anyone know how overwhelmed I was by certain stimuli because I knew it wasn’t normal, suddenly made sense.

The lectures talked about how pain isn’t always a sign that something’s wrong in the body.  Instead, it is your body’s way of warning you about things.  And it turns out that the body isn’t always right about what it can and can’t handle.

I realized it was as though someone had come along when I wasn’t looking and lowered my pain and physical irritation threshold.  It was as if I was playing Limbo, and the people holding the stick decided to lower it from the height of my neck to the height of my shins.  You can’t play Limbo when the stick is that low.  And you can’t go through life normally when your “pain threshold” is only a fifth of what everyone else’s is.

As I listened to the stories in Neil’s lectures, I began to recognize myself in them.  I realized that my nervous system had been on edge, for years.  It wasn’t because I was crazy.  It wasn’t because I was depressed.  In fact, it was something that was happening totally out of my conscious control.

At one point in the lecture, Neil began to describe the chemical and physical changes which occur in the nervous system as a response to pain, both within the brain and in the spinal cord.  These changes are what cause the change in how a person experiences pain.  This was so much bigger than “you’re depressed.”  And it was actual science; like, the kind with evidence.

Of course I had a lot of questions after watching these videos, but from that moment on, I knew things were going to change for me.  Finally, an answer that made scientific sense, and which seemed to have a solution.

To be continued in Part 3!

And because I know you’ll want to check out the videos now, they are:

Neil Pearson: Overcome Pain, Live Well Again

Chronic Pain, Fibromyalgia

How a physical therapist helped me through my lowest point, Part One

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This post is the first in a series of posts about my life-changing experience of pain neurophysiology education.  To see a list of all of the posts, click here!

Part One: Hitting Rock Bottom.

A few years ago, I was at one of my lowest points. A few things happened in my life, all within a short time period, that caused my pain levels to flare up. I had been attacked by a client at the group home where I worked. In the attack, I was thrown against a wall, which, of course, was not great for my neck and back pain. The week before, I had sprained my ankle and was having trouble walking. I was also beginning to experience the beginnings of chondromalacia patella in my right knee.

It was a horrible time in my life. I was going from doctor to doctor, begging for someone to help me, to give me a diagnosis. I couldn’t understand why I was in so much pain; it was like it had taken over my whole body. I was afraid there was something wrong with me, deep down, at a cellular level. I started reading about something called fibromyalgia online, and was frightened by what I read. I realize now that I what I was reading was out-of-date information, but at the time I became very frightened that something in my body’s chemistry was off, causing problems with inflammation.

The absolute worst moment was when I went to see a pain specialist at a highly-regarded hospital near me.

This guy looked great online. He actually listed fibromyalgia amongst his clinical interests. He wasn’t just a random doctor; he was the head of the anesthesiology department. He also had a law degree, which I figured meant he was really smart.

But he was no help at all. Most of the appointment was conducted by a resident (medical student in training). Because he could see many of my records from other physicians electronically, he didn’t seem to think he needed to do an examination of his own. Not once did he walk across the room and look at my back.

I tried my best to express how bad things were. I explained the fears that had plagued me for months, that I was afraid I had fibromyalgia, or a problem with inflammation.  Despite the fact that he’d listed “fibromyalgia” within his clinical interests, he seemed to have no idea what I was talking about.  I also asked him if he could give me some medication for the pain. His eyes got wide, as he suddenly “remembered” that every new patient was supposed to receive a drug test.

I left that day with a lump in my throat and my pride wounded. Somehow, this whole appointment that I had been looking forward to for so long had boiled down to the doctor thinking I just wanted to get high.

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The only good thing to come out of that appointment was that the doctor referred me to physical therapy at another hospital in the area. Without going into any detail, he said that a lot of his patients had had “luck” there.

I had actually been to physical therapy at the same hospital a few years earlier, when I had first hurt my back.  I had really liked my physical therapist at the time, so I decided to go back.  As luck would have it, they scheduled me with the same guy.

I filled out my intake paperwork, following the instructions and putting an “X” on the little diagram where they ask you to mark the areas where you have pain. I must have put about twenty X’s on the paper.

When Tim saw this diagram, he paused for a moment. “Hold on a second,” he said. “I’ll be right back.”

When he came back into the room, he explained that he’d asked the secretaries to make a few changes to my referral. He explained that the number of X’s I’d placed on my paper was alarming, that it was a sign there was something more going on with me than just “back pain” or “knee pain.” Instead, there was an underlying factor, causing me to experience pain in so many parts of my body. It was, he said, my nervous system.

“You’re really going to have to trust me on this,” he said. “I know it’s confusing to hear at first, but when people get like this, it’s because their nervous systems are processing pain differently. There’s no way you have injuries in this many different parts of your body, when you haven’t been in a car accident and you’re so young. I am going to teach you about what’s going on. Once you begin to understand that all of this pain is coming from your nervous system, we can start to work with that. You’re going to have to give me the benefit of the doubt in the beginning, but we really can help people get better.”

Click to continue to Part Two.

Chronic Pain, Fibromyalgia

Things You’ve Got to Try: Moist Heat

hot tub water

This is one of those pieces of advice it took me way too long to follow.

It took me about ten years between the time my friend first suggested it to me in high school, and the time I actually tried out a heating pad with moist-heat capabilities.

All this time, I thought I was getting the same benefits from taking hot showers, or spending time in the hot tub at my gym.  After all, both of those things involve hot water and some steam.  It’s the same thing, right?

Wrong.

There is something uniquely awesome about a heating pad holding all that steam against your skin.  Steam is, by its very definition, hotter than water in its liquid state.  Sure, there is steam in the bathroom when you’re taking a shower, but it’s floating all over the place and out through the cracks around the door.   The heating pad traps it right against your skin, where it’s harder to escape.

For this reason, a moist heating pad can actually be better than a hot shower or a hot tub.  Granted, it’s not as much of a whole-body experience, but if you are trying relax one specific part of your body, this is what you want.

I just love it because it’s so quick, easy, and cheap.  A spa in a 12″ x 24″ rectangle.

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I was a little nervous at first about combining water and electricity, but the inner cover is completely waterproof.   This is what it looks like with the outer cover removed:

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There is a third part that came with my heating pad—a sponge, that you wet in the sink and then place over the inner cover.  Um… I lost mine.  But it’s no big deal because I’ve found that wet paper towels draped over the inside cover work just as well.

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How to use a moist heating pad:

1) Put a towel down on your bed/chair before you get started.  Not to be gross, but you want your skin to be dripping by the time the thing’s really heated up.

2) Make sure there aren’t any cracks on the inside cover before you use it.  It’s only waterproof when the electrical bits are all sealed up.

3) When you’re done using the heating pad, be sure to wipe the moisture up right away.  When water evaporates from your body, it actually takes heat with it.   (This is why sweating helps to cool us down).   In the winter, you will be cold if you leave the steam on your skin to dry up on its own.

Buying a moist heating pad:

Be sure you get one that says “moist heat” on the box.

This is the heating pad I use: Sunbeam 764-511 King Size Moist/Dry Heating Pad

Make sure you get one with an automatic shut-off!  Moist heat is so relaxing, you will probably fall asleep at least once.

Thoughts/Comments/Questions—let me know! 

“Hot Tub Water” picture courtesy of pacfolly on Flickr.

Chronic Pain, Fibromyalgia

Someday there will be a test for fibromyalgia

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One of the reasons I am so optimistic about the future is that someday I believe we will have a way for doctors to see just how much pain a person is in.  It won’t be a matter of taking the patient’s word for it (though that should be enough) or wondering whether or not a patient is faking it.  Instead, there will objective results right on the screen.

What I am talking about is functional magnetic resonance imaging, or fMRI.  An fMRI is slightly different from what most people think of as an MRI.

A regular MRI takes “snapshots” of what is going on in the body.  Your doctor might send you for an MRI of your spine if you are suffering from back pain.  Sometimes women have breast MRI’s if something odd shows up on a mammogram.  An MRI shows you what is happening in the body at a particular moment in time.

An fMRI, on the other hand, is a way of looking at blood flow in the brain.  It shows which parts of the brain are more active than others.  Because the more active parts of the brain require more oxygen, an fMRI will show increased blood flow to those areas.

Researchers working with fMRI have been able to identify distinct patterns of brain activity in the brains of chronic pain sufferers.  These patterns of activity set chronic pain sufferers apart from normal, healthy individuals.  These distinct patterns are unique to people with chronic pain and are sometimes referred to as a “pain phenotype.”

I have heard of several research groups in the US who are investigating whether or not pain sufferers can learn to “rewire” their brains using the information given in an fMRI.  This is done by using a form of biofeedback.   There is evidence to suggest this can be done.   (If you would like to know more about biofeedback, check out these great explanations by Christopher DeCharms and Dr. Sean Mackey).

I’ll be writing more on the idea of biofeedback in a later post.  For now, the fact that an fMRI can even show pain activity is exciting to me.  In a world where chronic pain/fibromyalgia patients are routinely pushed aside, dismissed, and belittled, fMRI offers us all hope.

People who really understand pain know that it can be a disease in its own right.   Once a person’s nervous system gets wound-up enough (yes, “wind-up” is actually one of the scientific terms that refers to this process), the pain can be out of control, and no longer in proportion to whatever physical injury might have originated it.

With brain imaging, this phenomenon will become more clear.  Perhaps someday, pictures of the “pain phenotype” will  appear in everyone’s medical school textbooks.  A sympathetic doctor won’t be something we have to travel far and wide for, like the pot of gold at the end of the rainbow.  Pain will be understood as a disease in its own right, and perhaps then adequate pain medication can actually be given.

Or… who knows.  Maybe pain patients won’t need as much medication because instead, we will be able to learn to control the pain-processing parts of our brains using biofeedback.

Either way, I am optimistic!

For more information, you can check out a new page in my Resources section called “Brain Imaging for Chronic Pain.”

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**Ok, so this photo is actually a picture of someone’s heart, but it looks a lot like the fMRI’s I’ve seen in documentaries.  I know there are better pictures out there, but I get nervous about that whole copyright infringement thing, so for now I’m sticking to what I can find in Creative Commons.  Thank you to Glyn Nelson.**

Above rainbow picture courtesy of SugarBear1956 on Flickr

Central Sensitization, Fibromyalgia, Interesting Articles, Pain Science, Resources, Scientific Articles

Great article– The Clinical Concept of Fibromyalgia as a Changing Paradigm in the Past 20 Years

Excerpt from “The Clinical Concept of Fibromyalgia as a Changing Paradigm in the Past 20 Years” — Maryann Fitzcharles and Muhammad Yunus

“Neurophysiological studies have contributed to the acceptance of FMS as a valid condition. Demonstration of objective changes in the research setting has given clinicians the confidence to acknowledge a condition that presents with only subjective complaint and no objective clinical findings [1]. Dysregulation of pain processing has been demonstrated at various levels in the nervous system, but we still lack an objective test in the clinical setting to confirm a diagnosis or gauge response to treatments [1, 7]. However, this is no different than other well-recognized conditions, for example, irritable bowel syndrome (IBS), migraine, and depression. It is undeniable that depression is a serious condition and yet it lacks an objective test.

Even with objective scientific support of abnormality, some scepticism still exists regarding the validity of subjective complaints requiring complete reliance on the practice of the art of medicine [8]. The controversy regarding the existence of this syndrome should now be put to rest. Efforts should be directed towards better understanding of the neurophysiological abnormalities, improved clinical recognition of patients, and translation of mechanistic studies into optimizing treatments. In this paper, we will present current concepts of FMS, which can be applied to the rational management of these patients. This paper will address current concepts and challenges pertaining to the clinical understanding of FMS.”   (Italics mine).

This is a great article if you want to read about fibromyalgia from the perspective of a scientist.  Muhammad Yunus is one of the preeminent researchers of fibromyalgia.  Check it out!

Fibromyalgia

Inflammation, Fibromyalgia, and Deceptive Marketing Tactics

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Ok, so I wish I could stop going on angry rants on this blog.  But, ironically, some of my rants have turned out to be among my most popular posts… so I’m going to keep going with this one.

One of the things that bothers me most about the majority of the online content regarding fibromyalgia is the idea that fibromyalgia sufferers must fight inflammation.

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Before I go any further, let’s talk about inflammation for a little while.  In general, I think it makes sense to break inflammation down into two categories: localized inflammation and systemic inflammation.  Localized inflammation occurs in one specific part of your body: you have a wound that’s healing, or you have tendinitis in your elbow.

Systemic inflammation, on the other hand, is a whole-body thing, and usually takes place as some sort of disease process.  For example, lupus is “an autoimmune disease characterized by acute and chronic inflammation of various tissues of the body.

Decades ago, when researchers first began to look at fibromyalgia, they suspected that some sort of systemic inflammation might be involved.  They questioned whether fibromyalgia might be an auto-immune condition, such as lupus or rheumatoid arthritis.  They were looking for some sort of obvious physical changes in the body; looking for inflammation in the joints, and focusing on on the idea of “tender points.”

Yet none of this research really revealed any of the physical signs they were looking for.  Basically, doctors couldn’t find anything “wrong” with fibromyalgia sufferers.  For a while, doctors measured the number of “tender points” on a patient’s body, but as this 2010 American College of Rheumatology briefing asserts, the tender point test has been shown to not be a reliable means of diagnosing fibromyalgia.

As researchers began to rule out the idea of fibromyalgia being some sort of autoimmune or inflammatory condition, they began to pick up on the idea of central sensitization.   Proposed by scientist Clifford Woolf in 1983, the idea of central sensitization is that people’s nerves can be altered by an extremely painful physical experience.  The way these nerves function can change in response to this experience and leave the person with a heightened sensitivity to pain.  This heightened sensitivity persists, even after the initial injury has healed.

Now most scientists believe central sensitization to be the cause of fibromyalgia.  While there are a lot of things we don’t yet know about it, what we do know is that it is not caused by an abnormal inflammatory response, like rheumatoid arthritis or lupus.  This is why fibromyalgia sufferers have historically been dismissed by doctors—by all objective diagnostic tests, we appear normal.

The fact that so many fibromyalgia sufferers have been dismissed by doctors is what makes us so susceptible to frauds, fads, and bad information.

I can’t even count the number of times I’ve been reading an article on the Huffington Post or ABC news and seen a “Suggested Article” at the bottom screen that reads something along the lines of “Problem with inflammation? You might have Fibromyalgia.”

I’m here to tell you that no, you don’t.  Inflammation is not a symptom of fibromyalgia.

There are simple blood tests which doctors use to determine whether or not a patient has a problem with systemic inflammation.   C-reactive protein and erythrocyte sedimentation rate are two of the most basic measures of inflammation.

If you are concerned about your health, go to your doctor and ask for these blood tests.  If this is a problem that’s been going on for a long time, chances are he or she has probably already ordered them.  You can always ask for them again– I don’t remember ever having to pay some sort of huge copay for them, as they’re pretty basic– but if they come back normal, you do not have a problem with inflammation.

For the first few years after I developed chronic pain, I spent a lot of time wondering if I had a problem with inflammation, thanks mainly to the erroneous information I found in the Internet.  None of the doctors I saw ever seemed to take me seriously.  After I took an anatomy class and learned about the tests that can measure inflammation, I realized why.  I had had these blood tests performed several times a year, and the results were always normal.

This is why I get so angry about these articles and websites that just seem to prey on people’s fears.  I spent years worrying if I was on the road to developing lupus or arthritis or any number of autoimmune conditions, thanks in large part to the misinformation these people spread.

Let’s not be victims of unethical marketing tactics.  If you have a problem with chronic, persistent pain, ask your doctor for the blood tests I mentioned.  If they come back normal, you are going to be okay.  If they come back abnormal, it is time to see a specialist.  The thing to remember is that there are treatments for autoimmune and inflammatory conditions.  If your inflammatory response is so messed up that you need treatment, it will show up on a blood test.  Otherwise, thank your lucky stars and start reading up about how to work with a sensitized nervous system.

**The picture above is actually of a blood sample taken from a dog. How cool is that?  Thank you to Nottingham Vet School for putting it on Flickr.