Central Sensitization, Chronic Pain, Creative Writing, My Story

How I developed central sensitization, Part 4

I began to wonder if something about the compartment syndrome and the leg surgery could have changed something in my chemical makeup, weakening my body and depleting its healing response.

After all, pain was supposed to be my body’s way of telling me that I was injured.  Something was broken; something was wrong.

Time and time again, I’d go to see a doctor, and they wouldn’t be able to find anything wrong.  My elbow was fine; my wrists were fine.  One of my shoulder muscles had a knot the size of a pea, but according to the pain specialist I saw, it  “shouldn’t be causing this much pain.”

It was honestly so, so frustrating.  I really started to think there was something wrong with me that doctors just couldn’t find.  Something wrong in my tissues; maybe some kind of problem with inflammation.

***

My primary care doctor back home started to think there was something wrong with me psychologically; that maybe this was depression, or anxiety.

But her suggestions just didn’t resonate with me.  I’d been depressed before.  I knew what it felt like, and this wasn’t it.  As much physical pain as I was in, I was still in so much less pain, emotionally, than I’d been in as a teenager.

After all, I’d been through a time when it felt like daggers just to breathe; when I was so exhausted from trying to make it through the day that the walk from my parents’ driveway into the house seemed so far I might not make it, and I had to rest in my car.

I’d been through all that, and it hadn’t resulted in physical pain like this.  In fact, my body had been at its peak, running faster and faster.

Now I’d come out of all of that– the clouds had finally lifted, and for the first time, I felt like knew what I wanted out of life.  I was enjoying my classes, and the fact that I was meeting so many like-minded people.  I felt like we were all going to graduate and change the world together.  Finally knew what it felt like to be happy, when before it had been just a word.

How could depression be causing this debilitating pain now, when it never had before?   Apart from the pain itself, I was actually happy with my life now.  It didn’t make any sense.

To be continued in Part 5.

To start from the beginning of this series:

 

Creative Writing, Favorites, My Story, psychology

The way I wish I could write: Natalie Breuer, “On Depression”

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I haven’t written much yet on my struggles with depression in my teens/early 20’s. Those are perhaps my most real memories.  They made me who I am; they prepared me for what came next.  (After all, if I could make it through some of those dark times, I could definitely make it through physical pain).

Those memories are, of course, the hardest to write about publicly.

That is why I’ve been so struck by this amazing post from Natalie Breuer at Natalie’s Lovely Blog.  Ever since I first read it last month, I just can’t get it out of my mind.

I was just so struck by the way Natalie put her experiences into words.  Of course, my story is different than hers, but I noticed a lot of parallels and her writing really just took my breath away.

Because I love good writing, and am trying to become a better writer, I’m making it a goal for 2017 to really pay attention when people use language well.

So here are two excerpts from Natalie’s post which I really loved, and want to remember:

When things got really bad, I attempted to detach myself from reality. I hardly spoke to anybody, and when I did, my words were heavy and cruel. I drove spaces between myself and the people who cared about me and felt no remorse as I did. I grew my hair until it reached my hips, I stopped wearing shoes, and I scrubbed my hands nine, ten times a day. Somehow, they felt unclean no matter what I did. I only took cold showers, and I ran every morning until the only thing I felt was the ache of my body and a heartbeat in my left ear. I figured the more worn out I was, the easier it would be to sleep again.

And yet the most important thing I’ve learned over the past couple of years is that it is possible to love a place or a person, but also know that they aren’t the right fit in any sort of permanent way. I have also learned that it is possible to know a lot of different things about a person but nothing about what they are actually like. I do not know if I will ever get used to it — having to quietly get rid of someone, having to leave some place — but I do know that it is the only thing I can do to help myself sometimes. It is the most difficult and important thing to understand that just because you need something to end in order to move on, doesn’t mean it wasn’t once the most significant, beautiful part of your life.

I feel like I could say more here, but honestly, those quotes are really all you need.

I hope you will check out the rest of Natalie’s post, and her blog in general!

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

Useful chronic pain terms to know

In my blog, I talk a lot about central sensitization, which describes the changes that can take place in a person’s nervous system and make her more sensitive to pain. However, there are many other pain-related terms you will most likely come across, whether you’re doing your own research or simply trying to understand your medical records.

So here is a list of some of the most common terms I have come across in my own reading.  I hope you find it helpful.

Pain Amplification: means pretty much the same thing as central sensitization– that your nervous system is “amplifying” pain signals.

Allodynia: When the nervous system perceives what should be harmless physical sensations as extremely painful.  A friend once told me there were times she couldn’t stand to feel the fabric of shirt she was wearing against her chest.  Tears came to her eyes just describing it to me.  The fabric was not damaging her skin in any way, but her nervous system processed the touch sensations as though it was. 

Hyperalgesia: When the nervous system perceives what would be a harmful stimulus to anyone, but in an exaggerated way.  It’s as though it “turns up the volume” on the pain signal (or gets a little “hyper” with it).

For a really interesting explanation of allodynia and hyperalgesia from a scientific researcher, check it out  Juniorprof’s site.

Chronic Neuropathic Pain.  Neuropathic means having to do with the nerves, originating from the nervous system.  This word also describes nerve pain from other causes than central sensitization, such as nerve damage or pinched nerves.

Idiopathic Pain, Chronic Idiopathic Pain Syndrome.  Idiopathic has to be one of my least favorite words, but it simply means that the cause of a particular health issue is unknown.

Not-so-helpful terms for chronic pain:

The following are terms that convey a more psychological, or even psychoanalytical, meaning for pain.  At least one of these diagnoses stems directly from Freud, whose other theories have been almost unanimously discredited.  If your doctor goes straight to these quasi-explanations for pain without discussing the role of central sensitization of the nervous system at all, you need a second opinion, STAT.

Psychogenic Pain:  Pain that has a psychological cause.  In my experience, there is a big difference in explanations for pain that focus on the nervous system as a pain alarm system, and explanations that focus on someone’s mood or mental state.  There is also a big difference in the types of people who use each explanation.

The peer-reviewed articles I have read that discuss psychogenic pain tend to be written by psychologists and psychiatrists, as 0pposed to the neuroscientists who write about central sensitization.  Years ago I was happy to find these articles because they represented the closest thing I had gotten to an explanation.  Now that I know about how central sensitization occurs, I consider all the time I spent reading those articles to have been wasted.  Sure, mood and stress level can affect your level of pain, but I think most people who haven’t experienced chronic pain tend to make too much of it.  There have been plenty of times where I’ve been having a great day and all of a sudden, I’ve walked too far or I’m sitting in an uncomfortable chair and it all goes to hell in a hand-basket. Try to explain that to someone who subscribes to the mood-pain theory and its like you’re suddenly speaking to them in a foreign language.

Depressive Disorder or Mood Disorder, otherwise unspecified:
This diagnosis is basically the same thing as psychogenic pain, and I have many of the same issues with it.  I believe the public’s perception that depression can cause pain is being strengthened by all the TV commercials for anti-depressants like Cymbalta and Lyrica, which can also supposedly help to reduce feelings of chronic pain.  Some anti-depressants have been shown to reduce the severity of chronic pain, but this doesn’t necessarily mean that depression causes chronic pain.  Most of the research I’ve seen finds that there is a correlation between depression and chronic pain, but as anyone who’s ever taken a statistics class knows, correlation does not imply causation.  Just because depression and chronic pain tend to occur together does not mean that depression causes chronic pain.   In many people’s cases, it’s perhaps more likely to be the other way around.

Functional Somatic Syndrome: basically, a problem with how your body functions when everything appears to be normal by all objective measures.  A classic example would be Irritable Bowel Syndrome– your intestines look fine during a colonoscopy, the doctors can’t find anything wrong, but in your actual day to day life, you’re uncomfortable.  Or let’s say you have pain in your arm, so much pain that you don’t use that arm, but the doctor can’t find anything wrong with it.  That’s what makes it functional, supposedly.

To me this is another waste of a diagnosis.  I have no patience for explanations of chronic pain that do not acknowledge the concept of neuroplasticity.  It’s like handing someone a novel that you’ve ripped the last six chapters out of.

Somatoform Disorder: If someone tells you you have this, just walk away.  Seriously.  This is the term psychologists use for someone who has physical pain in multiple parts of their bodies “with no physical cause that doctors can find.”  This is also the exact definition for someone with central sensitization syndrome.  Read this article on somatoform disorder and note how not a single mention is made of central sensitization or the nervous system in general.

Somatoform disorder is reported to be higher among victims of abuse, and I’m not trying to argue that emotions/traumatic memories/PTSD can’t lead to the experience of pain.  But I do think any explanation of chronic pain that doesn’t discuss the nervous system at all is completely worthless.

Conversion Disorder: This diagnosis stems directly from Sigmund Freud.  In a nutshell, it is used to describe someone who went through some kind of traumatic experience and now has thoughts in his or her unconscious mind that pose a “threat” to mental stability.  Supposedly these unconscious threats are so horrible that the person can’t process them in his or her conscious mind without going insane.  Instead, the person’s unconscious mind somehow transforms his or her emotional pain into physical pain, because that doesn’t have any obvious meaning to it so it isn’t a threat to mental stability.

I first learned about conversion disorder from a neurologist (Dr. B.) who told me a story about a patient he met while doing his residency in neurology.  This patient was unable to walk and used a wheelchair even though doctors couldn’t figure out any reason why.  The woman’s elderly mother was also confined to a wheelchair and when she passed away, her daughter was suddenly able to walk again.  Apparently she told Dr. B. that, after her mother passed away, she realized that a part of her had wanted to kill her mother.  She believed that her unconscious mind rendered her immobile to stop herself from actually committing the murder.

Based on anecdotes like this one, I don’t think it would be fair of me to dismiss the ideas behind conversion disorder altogether.  But again, this is a story that I heard second-hand, and that you have now heard third-hand, so please don’t read this and wonder if maybe you could be crazy, too.  I only told this anecdote to give people an idea of the kind of situation that “conversion disorder” is meant to describe, whether or not it’s actually possible.

The bottom line is that the nervous system is able to do crazy things, and we have no way of knowing if that woman’s realizing she wanted to kill her mother really did have anything to do with her regaining mobility.  Personally, I think it’s more likely that there were other things going on.  If you watch the online lectures from Neil Pearson that I talk about all over this blog, you will see that there are other possible explanations for why someone with no obvious injury would be unable to walk.

Conclusion

The fact that different disciplines offer such widely different labels for pain says to me that there is not enough cross-over between psychology/psychiatry and neuroscience.  I think what happens is, because it takes so many years for someone to earn their M.D. or Ph.D, people who become advanced in their fields don’t often talk to others outside of their own discipline.  They spend the majority of their time interacting with others in their same graduate departments, all using the same “lingo,” and work and go to conferences with others who’ve had training in the same area.  This is not something that ends up creating the best care possible care for patients because people become “experts” at a very narrow range of things.

If you see a doctor who tells you you might have conversion disorder on the very first office visit, I would take it as a sign that he or she has been reading way too much old-school Freud and not enough neuroscience.  I would urge you not to waste time wondering if you’re crazy and seek out a second opinion from someone whose views are a little less off the beaten path.

I’ve included all of the terms that I can think of right now for chronic pain, but I may have left some out.  Feel free to add any to my list!