How I developed central sensitization: Part 5

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

***

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

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

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

***

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

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

***

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

***

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

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

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

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

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

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

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

***

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

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

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

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

To be continued in Part 6!

To read this series from the beginning:

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)

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.

A successful experiment with acute stress

In my last post I outlined some ideas from Neil Pearson on how to stress our bodies in positive ways, in the hopes of re-shaping the way we process pain.

I continued my experiment at the gym last night, and I think I stumbled upon the beginnings of what something like that would feel like.

Normally, when I go to the gym, I’m pretty much there to use the pool.  It’s the one form of exercise I never have to “pay for” in any way afterwards, in terms of pain or stressing out my SI joints.  I usually just do my warm-up and cool-down in the pool as well.

So usually, I don’t hang around–  I’m just in and out.  I head straight for the pool and then make an immediate beeline to shower and leave because, well, I’m freezing.  It’s fun, but it’s also kind of rushed.  Some days I feel like kind of a robot.

With the lessons from Neil Pearson’s post in mind, I decided to switch things up a little bit.

***

Last night, instead of heading straight to the pool, I first stopped by one of the empty dance studios. I had it all to myself– a big room with a smooth, polished wooden floor and one wall that was all one big mirror.

I had my headphones on, listening to a playlist of music I really liked.  And I picked up one of the yoga balls, and just started dribbling it back and forth, to the beat of the music, like it was a basketball.

Now, if you think about this in terms of exercise, it’s not particularly hard.  It doesn’t require a ton of strength, and I wouldn’t technically call it cardio.

But, if you think about it in terms of the nervous system, it actually was a bit challenging.

I don’t play basketball.  I don’t think I’ve tried to dribble a ball in years.  It’s awkward to try to dribble a giant yoga ball… but it’s kind of fun.

However, it does require quite a bit of coordination, especially as some of the songs on my playlist had pretty different beats from each other.  With each new song, I had to completely switch up my rhythm.

I ended up getting really into it, dribbling and jamming out to my tunes for about 45 minutes.  And I think I managed to reach exactly the kind of state of “acute stress” Neil was describing in his post.

It was a difficult new activity for me, but it was fun.  It was challenging, but in a controlled way.  I felt as though I was pushing the limits of my nervous system, in terms of coordinating movement patterns that were unfamiliar to me, while at the same time limiting the overall stress to my system.  (In fact, I think I probably was reducing my overall stress at that point– it was the end of a good day, I had all the time in the world, and I really love my music).

I think this is the kind of activity that, when performed regularly, could have a positive impact on reshaping the way the nervous system regulates pain signals.  It’s “distracting,” in a healthy and fun way.

Obviously these would be topics for further research, but I think two additional components of what I did, which add to its helpfulness, are

  1. That I found the activity enjoyable, and
  2. That I was listening to music, which on its own can also reduce our perception of pain

This is what I find so fascinating about Neil’s approach to chronic pain treatment— an activity can be therapeutic not just because it makes us stronger, or increases our endurance, but because of its impact on the nervous system.

It’s okay to treat pain and the nervous system as your top priority, not just as a side effect or the means to an end of another exercise program.

***

I find the concept of treating nervous system directly to be so fascinating, and I hope you do too!  If you want to know more, I would definitely suggest checking out more of Neil Pearson’s work.  And, as always, let me know if you have any questions or comments!

 

 

 

 

 

Neil Pearson on the benefits of acute stress

I recently discovered this super thought-provoking article article from Neil Pearson on the positive effects of acute stress on the body.

We normally think of stress in as the chronic, ongoing stress that continues for weeks on end, taking a toll on our body in the process.  However, there are ways in which acute stress– that is, stress that only occurs during a short period of time, and then comes to an end– can actually benefit our bodies.

Neil writes,

If you want to make a muscle stronger, use it more.  If you want to grow more tolerant of an irritating or bothersome sensation or experience, step up to it.  Face it.  In time, it will bother you less.

Try playing a string instrument for the first time, and feel the intense pain from pushing down strings with your fingertips.  Keep doing it and your body will adapt, even creating a callous as a protective response, just like woodworkers and carpenters have on their hands and dancers have on their feet.  In other words, when you stress your body, typically it responds by being better able to tolerate that stress next time.

We are built to survive.  If there’s anything I learned in my health and science classes, it’s that our bodies are built to adapt specifically in response to the stresses we experience. If we continually perform a certain movement, the muscles that perform that movement will become stronger and better suited to the task.

If we perform a new task repeatedly, we will get better at it, until it becomes second nature.  Our nervous systems will change, and our mental map of this task will become more developed.

Our bodies crave the kind of challenge that we can rise to.  As Neil says, “acute stress is adaptive. This makes sense. When we exercise – challenging our physical abilities – we are not just improving our bodies physically; we are also making changes in our nervous systems.”

So.  How can people with chronic pain and health issues use acute stress to our advantage?

Neil suggests that we harness our body’s ability to grow and change in ways that can benefit us.  By teaching our bodies to do new things, we can give our nervous systems something to process other than pain, and try to jump-start that healthy, adaptive response.

If pain has been preventing you from exercising, Neil suggests:

Create acute stress while limiting the chronic stress of a flare-up: Make a daily plan to try an activity (or part of an activity) you want to do, but do it while you do your very best to keep your breathing even, your body tension low (only use as much as you need for the activity), and your stress level as low as possible.

So basically: we stress our bodies– our nervous systems, in particular, but also our muscles– in new ways.  But we make sure we are in the right place, mentally and physiologically, while we do it, by proactively taking steps to keep our nervous systems from going into fight or flight mode.

There’s even more in Neil’s article.  He talks about some of the positive effects of stress and exercise on the brain– how chronic pain can dim these effects, but how the techniques he suggest might present a way around that.  Definitely check it out!

***

All this talk about the positive aspects of stress reminds me of health psychologist Kelly McGonigal’s excellent TED talk on “How to Make Stress Your Friend.”  I’ve posted about it on my blog before, because it’s just really so great.

In this talk, McGonigal explains more about how stress can actually be a healthy motivator, seeking us to reach out to others and form social supports, and also spurring us on to create meaning in our lives.  She also suggests that when we learn to view stress as a potentially positive factor, it can actually limit some of the negative effects we normally assume stress will have on us.

There’s so much more to say, but for now, I think I’ll let you check these two resources out!  Happy reading/Youtubing– let me know what you think!