My Story, Women's Health

An Update on Life with One Ovary

One of the topics readers most frequently contact me about is the time I had to have emergency surgery to remove my right ovary.

In case you aren’t familiar with the story, I had had abdominal pain throughout most of my twenties.  Doctors had told me it was nothing to worry about– just digestive issues.

Well, in February 2013– just a few days before my 28th birthday– the pain in my right side, and nausea, became so severe that I went to the emergency room.

There, an ultrasound revealed that I was suffering from ovarian torsion— something had caused my right ovary to rotate, with the Fallopian tube wrapped around it in such a way that its blood supply was being cut off.

The doctors rushed me in to surgery in an attempt to reverse this process and restore blood flow, but it was too late.  The ovary had to be removed.

For months, after this– I’d say a year, really– I suffered from both physical and emotional fall out.  And actually, a lot of what I experienced me is what my readers say they also go through.

I decided it’s high time I give everyone an update on this situation, and I’m here to tell you that, three years later, everything is alright.

***

Physical Symptoms:

I was in pretty significant pain for about two weeks following my surgery.  I really relied on narcotic painkillers.  They masked the pain so well that I’d think I was better and didn’t need them anymore.  Then my last dose would wear off and I’d feel like my world was coming to an end.  Other people (mainly my parents) would have to remind me that I was due for another Percoset, and then I’d come back into my rational mind again.  (By the way, I am a FIRM believer in the usefulness of opioid medications.  This entire ordeal would have been much more emotionally scarring if I’d had to bear the brunt of this mind-warping pain without them) .

After about two weeks I was okay… until my next period.

This is pretty graphic, but I figure if you’re here, you’re interested.  I went back to my OB doc in agony again, like I’d just had the surgery yesterday.  He explained that basically, now that I was menstruating, blood was coming out of  the side my uterus and leaking into my abdomen, because now I had a gap where the Fallopian tube used to be.  Basically, it was a totally benign phenomenon– my body would just reabsorb it– it was just causing pain because there was fluid where fluid wasn’t supposed to be.

At the time, my doctor told me it would be like this every time I got my period, and suggested I take the birth control pill to lighten my periods and ease the pain.  I did this for a few months, but eventually as time wore on, things stopped being painful.  Now I believe that my body just hadn’t fully healed from the surgery.  It’s also possible, as one nurse practitioner suggested, that my nervous system had become sensitized to pain in that area (gee, that sounds familiar!).

What I do know, for sure, is that three years later, I am having normal periods without agonizing pain.  I sometimes do notice that during my period, I’m a little sore on the right side, but it’s something I am pretty much able to ignore.

Mood/Emotions/How Do I Feel?

I feel totally and completely normal.  What all of the doctors told me is true– when you lose one ovary, the other one completely takes over.  You don’t really need two.  (In fact, there’s a reason why we have two).

My left ovary is a magical little powerhouse and it has taken over completely, doing everything I need it to do.  I feel the same.

Blame/Doubt

It took me a really, really long time to work through some of the emotions that came from this.

I am still mad at the doctors who so easily brushed my concerns aside.  To be fair, they were gastroenterologists, not ob-gyns.  But still.  One of them literally even wrote a book on digestive disorders in women.  (I don’t hate her enough to name her here– in fact, she is still my doctor because I think she’s a good gastroenterologist).

But still, on this, she did brush me aside and tell me it was irritable bowel syndrome.  Seeing that I am a woman of child-bearing age, I wish she had thought to tell me to consult an OB-GYN.

I also still think that the gluten-free craze is just a fad, and that it has power to do just as much harm as it does good.  (This doctor’s advice to me, the last time I saw her before this happened, was to try switching to a gluten-free diet to see if I felt better).

But I’m no longer mad at myself.  I did the best I could with the information I had at the time.

I try not to judge myself for the way I handle things.  There have been times I’ve under-reacted, and there have been times I’ve overreacted.  Nobody is perfect.  We do what we can.  Pragmatism is my goal.

Fear of it happening again

And this. This is really the number one thing women write to me about– the fear that the same thing will happen to your good ovary.

I can’t promise you that nothing will, but I can tell you that so far, nothing has happened to mine.  It is just fine.

They told me what happened to me was about as rare as getting hit by a bus, or being struck by lightning.  The odds are like one in a million.  The odds of it happening again? Almost minuscule.

Still, there have been a number of times that I’ve freaked out and rushed into the doctor’s office for an emergency same-day ultrasound.  (When you’ve already been that one in a million, it doesn’t really make you feel like taking chances).  But my ovary has never been twisted.

I’ll tell you the truth, in the past three years, I think I’ve had six of these.  I know that’s a lot.  But I know that it won’t seem like a lot to any of the women who’ve emailed me.

The majority of the times, the doctors were able to decipher what had happened to cause me pain.  That I had ovulated, or was about to ovulate (normal ovulation causes the formation of a little cyst, which then releases the egg).

Some of these cysts, they said, wouldn’t be enough to cause pain in every woman, but for whatever reason, in me– probably now that I’m hyper-focused to that area– I notice it.

And there were a few times I was really scared, when it hurt a lot.  But I learned that, in some women, normal ovulation can be really painful– even more painful than what I was reporting.  So I would just have to trust in the ultrasound, when it showed my ovary just doing its same normal healthy thing.

So, that is where I’m at right now.

I still hope to have kids someday, and as far as I know, there is no real reason why I won’t be able to.

Now that I write this, I can’t believe how sane and calm I sound.

Believe me, it wasn’t always this way.  I was the same as those of you who end up sending me ten panicked emails (it’s okay, I say this affectionately).  Really, I was.   But I had no one to email.  And now, for me, things are okay.  And there is every reason to think that, eventually, they will be for you too.

My two previous posts on my surgery:

So… I lost an ovary

Beware the Red Herring (follow-up post)

Central Sensitization, Chronic Pain, Pain Science, Quotes, Resources

Christopher deCharms: A look inside the brain in real time

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

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

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

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

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

deCharms explains,

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

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

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

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

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

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

As deCharms explains in this additional interview:

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

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

***

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

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

Hope you’ll check it out!

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.

***

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.

Central Sensitization, Nervous System, Pain Science, Quotes, Scientific Articles

Let’s give this a whirl: explaining a scientific article in plain English

Tonight, I’m going to try out a type of post I’ve been wanting to write for a while: taking a scientific journal article on central sensitization, and translating it into plain English for my readers.

I got the idea from Paul Ingraham of PainScience.com.  He has a fantastic “jargon-to-English” article on central sensitization on his site (a translation of a paper by renowned pain researcher Clifford Woolf), which I really love.

There is no reason why you, as a patient and chronic pain sufferer, should not be able to know a little bit about the scientific research being done on your condition.  You are going to need to be able to advocate for yourself, stand up for yourself, and remember there is a legitimate explanation for your pain, even if other people don’t always see it that way.  Knowing there is research to back you up helps.

Ever since I first learned of the term “central sensitization” back in 2011, I found so much comfort in reading these articles.  Even if I didn’t understand every word, just knowing there were people out there who would believe me about my pain, if I met them, provided me with the sense that I wasn’t alone.

These changes to our nervous systems are real, even if some of the people in our lives don’t always understand.

***

So anyway.  The article that I want to take a stab at tonight is “Central Sensitization: A Generator of Pain Hypersensitivity by Central Neural Plasticity” by Alban Latremoliere and Clifford J. Woolf.  (In the interest of keeping things manageable, I am just going to outline the abstract, which is basically a summary of the article).

The article discusses central sensitization, which is the name of the process through which our nervous systems learn to become more sensitive to pain.

Let’s look at it in bits and pieces:

“Central sensitization represents an enhancement in the function of neurons and circuits in nociceptive pathways caused by increases in membrane excitability and synaptic efficacy as well as to reduced inhibition…”

This basically means that the parts of the nervous system responsible for sending pain signals become more active than they were before.

“Increases in membrane excitability” means that it will take less stimulation for nerves to send a pain signal.

An increase in “synaptic efficacy” means that the nerve is going to learn to be more efficient with the neurotransmitters that it has.  So, even though the nervous system still has the same chemicals floating around in it, it is going to learn to start sending stronger and stronger pain signals with those same chemicals.

Reduced inhibition.   Your body has many intricate systems of checks and balances within it.  It is how our bodies maintain control over our internal environment.

One way our body maintains control is by “inhibiting” some of the signals our nervous system sends.  This serves a really practical purpose– we do not need to be bombarded with reminders that our socks are a little bit itchy at all times.  Your nervous system chooses to block out certain signals when they are not useful, or in emergency situations (which is why people can feel no pain when they are in shock).

But in the case of central sensitization, our body’s ability to “block out” or “turn the volume down” on pain signals is reduced, meaning we ultimately experience more pain.

“Central sensitization is responsible for many of the temporal, spatial, and threshold changes in pain sensibility…”.

There are several ways in which these changes to our nervous systems manifest themselves.

We may find that, when something happens that we find painful, we end up experiencing it as painful in a larger part of our body than we might have otherwise.

I’ve really found this to be true with back pain.  When my back pain was at its absolute worst (before I discovered pain neurophysiology education) one tight muscle or muscle knot could make my entire back hurt.

“Because central sensitization results from changes in the properties of neurons in the central nervous system, the pain is no longer coupled, as acute nociceptive pain is, to the presence, intensity, or duration of noxious peripheral stimuli.”

This means that, in a sensitized nervous system, pain is no longer an accurate measure of the presence of an injury, or the degree to which our tissues may have been damaged by an injury.  The central nervous system is now doing its own thing, and you can’t really go by the pain to know what’s wrong.

“Instead, central sensitization produces pain hypersensitivity by changing the sensory response elicited by normal inputs, including those that usually evoke innocuous sensations.”

This means that we now start to feel pain in response to things that are not harmful, and which would have felt painful to us before.

To give you an example, I once knew someone who also suffered from chronic pain, and she said there were days she simply could not bear the feeling of clothing against her skin.  Just the feeling of a lightweight sweater against the skin of her chest made it burn and throb.

This person wasn’t crazy.  She knew her clothes weren’t “hurting” her.  But her nervous system was reacting as though those clothes were somehow damaging her skin.  There was a disconnect between her rational mind, which knew it was only clothing, and the parts of her nervous system which were contributing to her pain hypersensitivity.

(So… lest I end the post on a gloomy note, not to worry.  That’s where pain neurophysiology education comes in, to try to fix this disconnect).

***

Phew.  Okay.  That was not quite as easy as I thought it would be, all the times I thought about writing this post.  But hopefully you made it through!

Everything I write on this subject is meant to be a trial, of sorts.  I’m experimenting with what types of stories and explanations make the most sense, because I really have it in my heart of hearts to develop a set of educational materials on these nervous system changes.

So I want to see what works– what makes sense, what resonates.  (And what doesn’t).

I suffered for so long, thinking I was crazy, when the whole time there were answers out there.  And there was no good reason for it, except that most people (including many medical professionals) still do not know anything about central sensitization.

So I, and my blog, and my future potential physical therapy practice, are hopefully going to be doing something about that.

Please let me know if you have any questions, or any feedback on what sorts of things would be helpful in the future!  I do take requests!

Central Sensitization, Pain Neurophysiology Education, Pain Science

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

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

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

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

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

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

That brings us to our first quote:

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

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

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

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

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

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

Pain is like learning

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

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

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

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

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

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

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

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

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

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

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

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

Further Reading

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

Anything and everything by Neil Pearson

Lorimer Moseley & Body in Mind

The nervous system and chronic pain

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

What is pain neurophysiology education?

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

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

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!

Central Sensitization, Interesting Articles

Can music block pain signals? Music-induced analgesia

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I, personally, have known for a long time that music could help reduce my pain levels.  It’s just something that I always knew intuitively. Listen to music (good music, of course) –> feel better.

That’s why I was so intrigued when I found the following post from my friend Jo Malby on some of the science behind how music can lessen our experience of pain.  (I’m sharing it here with her permission, of course!).

Jo writes:

“The joy we derive from listening to music we love, much like anything that brings us joy, is always beneficial in helping us cope with chronic illness and pain. According to ongoing studies, researchers have found that there are many reasons for pain patients to listen to music they love.

Outside of the times when pain is too fierce or your body too sensitized and flared-up for sound or vibration, music can be a useful coping tool, though not only for the joy and escape music brings you.

With real physiological changes in the brain, listening to your favourite music can have a significant, positive impact on perception of chronic pain, as well as the pain itself, with some studies even finding music resulted in less intense pain levels.

Music also reduces anxiety and depression, both often natural consequences of unpredictable debilitating chronic illness and pain, and both difficult to manage and treat. Though it’s often under used as an natural anti-depressant.

Research has drawn its theories on how nerve impulses in the central nervous system are affected by music. Anything that distracts us from pain may reduce the extent to which we focus on it; music helps us shift our attention from the pain but it’s also emotionally engaging, especially if the piece has memories or associations.

With even the rarest of tunes now online — from YouTube to Spotify to Soundcloud to more exclusive sites — search for some of your favourite sounds or create playlists with songs that specifically help you through particularly difficult times or when pain is especially severe, and you need to calm it and your state of mind.

Personally, nothing gives my mood a lift like a little Billy Holiday, Dusty Springfield or Aretha; if feeling frustrated, Chavela Vegas (anger’s better in Spanish). More recently, Mozart’s been on repeat. I love music. (Almost) every genre. Find what you love. Play it. See if it helps you cope, lifts your mood, or offers a momentary sonic escape from the complexities that come with pain and chronic illness.

Scientists now know that listening to music involves a huge portion of the brain — auditory areas, of course, but also motor (movement) areas, the limbic system (involved in emotions), and areas of the brain believed to be responsible for increased creative thought.

Anything that lights up areas in the brain other than pain may also be helpful to reduce that pain.  ((Sidenote from Christy: this reminds me of some of the really cool resources I’ve linked to from Neil Pearson!)).

These effects may not be powerful enough in isolation but added to your pain management toolkit, using music when you are feeling frustrated or sad, depressed or angry, lost or alone, all can help you cope, feel better emotionally, and even lessen a tiny bit of pain.

A study conducted by Peter Vuust, of the Center for Functionally Integrative Neuroscience (CFIN) at Aarhus University, Denmark, found that fibromyalgia patients experienced less chronic pain after listening to their favourite music.

Additionally, recent studies on music therapy and chronic pain conditions found that music reduces anxiety, depression and pain— just from listening to music.

The effect is often referred to as ‘music-induced analgesia‘, and though that analgesia may be more subtle than profound, anything that helps you must be embraced.”

Some additional links:

Science Nordic: Music can relieve chronic pain

The Conversation: How music can relieve chronic pain

BBC News: How music can reduce chronic pain

Prevention.com: More music, less pain?

Study: Emotional valence contributes to music-induced analgesia

Body in Mind: Music modulation of pain perception

And for more from Jo:

Jo Malby is an amazing writer living with and sharing her experience of complex regional pain syndrome (CRPS) on her site The Princess in the Tower.

She also runs the site Inspire Portal, where she shares resources to provide creative inspiration to writers (and other artists!).

Definitely check out more of what she has to say!

Sacroiliac Joint

Could my frequent chiropractor visits be making my SI joint problem worse?

Normally, I tend not to share work-in-progress type posts. I don’t like to take up everyone’s time talking about something I’m not sure about.

I’ve just been through SO much– filled so many notebooks with my scribbles, had so many “epiphanies” thinking I’d figured it all out– only to find out that so many of the things I discovered turned out not to be true.

Now I tend to hold off on making pronouncements– much less asking other people to read about them– until I know I’m not barking up the wrong tree.

But there was one very interesting issue that came out of my trip from San Francisco, and I have a feeling it might be relevant to other people, too.

I think my frequent chiropractic adjustments may have been making my sacroiliac joint problem worse.

Since I developed my SI joint issues in the fall of 2011, I’ve gone to the chiropractor, on average, once a week. (Let’s not even talk about how much money I’ve spent).

When my SI joints first locked up, my chiropractor, Dr. K., was the only one who could even explain to me what was happening. I saw several different physical therapists, as well as a back specialist, and none of them were able to offer any type of diagnosis.

Dr. K., meanwhile, told me it was my sacroiliac joint making me feel like one leg was much shorter than the other. And, more importantly, he was able to fix it (at least temporarily).

However, I always noticed that during the first few hours after an adjustment, I seemed to be extra prone to having a setback. I used to try to go for walks following my appointments, but I found that even though my pelvis was “aligned,” one misplaced foot on uneven ground could make me “lose” my adjustment and end up even worse off than if I hadn’t gone to the chiropractor at all.

So I stopped doing anything extra after my appointments. I would try to sit in the car and rest for 20 minutes before driving. Then I’d come home and move gingerly throughout the house, knowing I would be extra prone to setbacks for the next 3 or 4 hours.

I’ve been in this holding pattern with this problem for years. Things are a lot better than they were in 2011, that’s for sure. But my pelvis is still unstable; I still can’t do everything I want.

***

Before I left for San Francisco, I found an interesting comment on one of the SI joint Facebook groups I follow.

Someone wrote that her physical therapist had cautioned her against getting chiropractic adjustments for her SI joint. The reason given was that the force of the adjustments could actually cause the ligaments in the area to stretch out, while they need to “tighten” back up in order to heal.

Something about this idea resonated with me, but I was about to get on a plane in a few days, and I didn’t want to try anything new. So I put it out of my mind, and actually went to the chiropractor twice in the week before I left, hoping to get myself in as good as shape as possible. Both times, my body slid back out of alignment afterwards like butter, and I got on the plane frustrated and expecting to limp for the entire trip.

Yet, during my two and a half week trip,. I actually started to feel better.

At first I thought it was in my head. It’s a new city– I was excited. I was distracted. I had my friends with me all the time– I was happy.

But now I think a big part of it had to do with the fact that I went two and a half weeks without any chiropractic adjustments.

***

Two days days ago, I went to see my chiropractor. It was actually my neck that was really bothering me– my SI joints didn’t feel bad.

During my visit, Dr. K. confirmed that my pelvic alignment was actually pretty good. He only performed one small adjustment to the pelvis (the lumbosacral junction, to be exact) just to help move things along a little further in the right direction.

But on the drive home from that visit, I felt markedly worse. I had to drive through a lot of road construction, and felt every single bump painfully in my lower back/pelvis, whereas I hadn’t really noticed the bumps on the way there. At one point, the car “thunked” down several inches off of the smooth, finished pavement onto the rough, unfinished surface that came next. A pain started there that I still had when I got home, and when I got out of the car, I was limping.

That’s when it hit me. Maybe the adjustments are making things less stable. Why, after all, would I come home so much worse off than before I had gone?

To be clear, I wasn’t limping after the adjustment itself. When I walked back out to my car from the office, I felt like everything was fine (and my neck felt a heck of a lot better).

But the adjustment itself may have put too much stress on my ligaments (and other tissues as well?) meaning that the bumpy drive home immediately afterward turned out to be detrimental.

***

It’s been two days, and I’ve been playing it by ear, trying to see if things start to feel more stable. And, guess what, they are.

I’ve had this funny feeling all along, like something about this problem didn’t add up. After all, I’d met other people with SI joint problems and they’d recovered much more quickly than I had. Why was I the one who could barely move, who I felt as though I was addicted to chiropractic treatments just to keep things lined up?

What if part of the problem has been the chiropractic treatment itself? Is it possible the adjustments have been creating a vicious cycle where, although my joints are put into alignment, my overall stability and ability to maintain that alignment is undermined?

I don’t know for sure, but given how much better and more stable I am beginning to feel again, two days later… I think it’s pretty likely.

It’s a pretty frustrating realization to have, after all the time and money I have dedicated to this “project.” Yet it is funny to note how, again, that San Francisco trip I was terrified of ended up teaching me something I could never have come to realize otherwise.

For now, I am going to forego the chiropractic adjustments, at least on my low back and pelvis, and see how things go.

***

Update, Sept. 2016: It turned out that chiropractic adjustments were absolutely making my SI joints worse.  I’ve stopped receiving adjustments to that area, and the SI problems I had for five years are beginning to fade into the background!  To find out more, check out my follow-up post The end of my SI joint issues is officially in sight!

Favorites, Inspiration, Interesting Articles, Neil Pearson, Pain Science

Neil Pearson on Building Hope and Recovery

I know I may have mentioned this once or twice before on my blog (or in like every post), but in case you missed it: Neil Pearson‘s work changed my life.

It all started when I met a physical therapist who had studied with Neil. This physical therapist opened my eyes to a relatively new approach to chronic pain treatment, called pain neurophysiology education. Ultimately, I was so inspired by what I learned that I began to consider physical therapy as a career.

I have written a lot on these experiences, and I always urge people to watch the three online lectures, given by Neil himself, that my physical therapist insisted I watch when I first began treatment with him.

For me, these lectures have always been a springboard– I come away wanting to know more.

Well, I was poking around on the Internet last night, and stumbled across this amazing webinar, Building Hope: The way through pain to self-management and recovery.  In this Neil Pearson discusses some new ideas and approaches to treatment that I hadn’t heard before.

The webinar itself is hosted by the Canadian Institute for the Relief of Pain and Disability, a really cool organization that’s worth checking out in its own right. They have a lot of great resources, and I love their compassionate, actively pro-patient stance. (Obviously, every organization tries to be “pro-patient,” but CIRPD really seems to get it right).

Here are some of the key points I’m taking away from this webinar:

1) Neuroplasticity means the nervous system can be changed, and if it can be changed one way (as in the case of chronic pain/central sensitization), it’s also possible to change it back.

2) Even just visualizing movement can help the nervous system inhibit its own pain signals. Research has established that exercise is a great way to stimulate your body’s own internal pain controls, but when the movement itself creates more pain, it can be counterproductive.

That is the beauty of just visualizing movement. As far as your brain is concerned, visualizing a movement is very, very similar to actually performing it.

As Neil explains at the 17:10 mark, visualization can actually help to stimulate the nervous system to inhibit pain. Over time, after you let your nervous system “practice” moving through visualization, you may find you have less pain when you actually go to move.

I think this is seriously SO cool. I can’t even find the words. It’s things like this that really inspire me to become a PT, and help people living with pain. (My takeaway: I want more information on this right now!!!).

3) You can help the nervous system block out pain signals by distracting it and giving it other information to process. You can use touch, or movement– even if it’s very very small movement.

4) Repetitive, rhythmic movements in particular can help to calm the nervous system by giving it something else to focus on other than pain. Rhythmic movements such as walking, breathing or even rhythmic gum chewing (what?!) have been shown to release more serotonin and help control pain.

***

I just honestly can’t even tell you how inspiring I find all this stuff.

I am fortunate that, right now, I am mostly able to move without significant pain. (Due to my SI joint concerns, I do have to be cautious).

But it’s nothing like the place I used to be in. I can remember a time in my own life when even thinking about moving was terrifying. I just felt truly stuck– like my body was a jail.

I can also think of people I’ve met– through blogging, reading stories, as well as the patients I’ve met while shadowing physical therapists– who are in equally as much pain, and seem to be trapped within their bodies.

These are people who, through no fault of their own, are in too much pain to move. It’s not that they’re lazy; it’s not that they’re depressed. It’s not that they don’t want to get better.

It’s just the way the deck was stacked; the way the cookie crumbled.

They are in too much pain; their injuries are too great; their nervous systems too sensitized. Perhaps they are obese; perhaps there are multiple health conditions going on.

Whatever the reason– it is so amazing to know that there is a way to begin to help them, without requiring them to move before they are ready.

I want to help those people. I want to be that physical therapist that comes in and helps the hard cases, the ones other medical professionals may have secretly labeled impossible. I want to sit with those people, and look them in the eye, and tell them that there is a way out of this.

***

I hope that you enjoy the video, and that you will also check out more from CIRPD and Neil Pearson. The webinar was also co-sponsored by the Canadian Pain Coalition and Pain BC— two additional groups with a lot to offer (why does Canada have all the cool organizations?). I could say more about how cool they are… but that will have to wait for another post.

I hope you are as inspired as I am! As always, don’t hesitate to let me know what you think!