Why I fired my primary care doctor after 10+ years.

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I’m still weird about putting too many pictures of myself online… here’s a nice sunglasses selfie!

Sometimes I just can’t believe the personal details I put online.  To be honest, I think that’s why I don’t work on this blog as often as My Sacroiliac Joint Saga.  It’s super easy to provide people with factual information, with only a few personal tidbits thrown in.

This blog, though?  This is the one I almost don’t want anyone to read. (Except not really, so keep reading!).

But I also know that what I put out there can help people– and it helps me, to know that I’m helping others.

So I thought I’d share with you why I decided to “fire” my primary care doctor, who I’ve been seeing for over ten years. This also means I’ll be leaving the medical practice I’ve literally been a patient at for my entire life (my Mom took me there when I was a baby).

***

As some of you know, I recently ended up in the emergency room fearing I had nerve damage, following what should have been a routine adjustment at the chiropractor.  I’m lucky that it did not turn out to be permanent.  However, the entire thing was incredibly stressful for me– I was in and out of two emergency rooms.  I cried, I hyperventilated, I thought I was going to faint.  I mean… imagine wondering if you were going to be walking like a drunk person for your entire life?  My heart goes out to the people for whom this is permanent.  I’d had no idea what it was like.

As you can imagine, this entire thing was incredibly stressful on my body.  Normally my resting heart rate is fairly low (once a long-distance runner, always a long-distance runner!).  But the stress and fear kept it soaring all weekend long.  At one point, one of the nurses strongly suggested I take the anxiety medication they were offering me because, medically speaking, they wouldn’t be able to discharge me with my heart rate as high as it was.

And then, 24 hours after that, when I was still walking funny and not totally convinced I was going to recover, my period came.

And it wasn’t a normal period for me.  I know that it’s common for some women to experience spotting or early periods due to stress, but it has literally never happened to  me before.  It didn’t feel like a normal period– this felt less like a gently flowing river, and more like an avalanche. I had cramps I’d never experienced before.

In retrospect, it probably would have made more sense for me to follow up with my OB-gyn’s office about this.  But I was still sort of in panic mode, and not thinking clearly.  So I went to my default option and called my primary doctor’s office.  After all, that’s what my discharge instructions from the emergency room said to do.

And I could not believe how rude she was to me.  

Normally, this doctor is very polite.  She and I haven’t always seen eye to eye over the years, when it comes to things like fibromyalgia and central sensitization.  My impression is that she doesn’t really know what central sensitization is– like many doctors I’ve met, it seems to be hard-wired into her brain that any symptoms of this sort have to be connected to mental health.

So she has said some things over the years that really irked me, or sounded skeptical when I described sacroiliac joint dysfunction.

However, at the same time, she never turned me down when I asked for a referral to see a specialist, or a physical therapist.   My requests were always processed promptly, so I felt like our difference in perspectives wasn’t necessarily affecting the outcome of my care.  (Because really, a primary care doctor isn’t the one I’d expect to have answers about central sensitization or SI joint dysfunction anyway).

But that day, I saw how our difference in philosophy could have life-altering implications. 

Because we weren’t talking about musculoskeletal pain, we were actually talking about my reproductive system.

And she was totally dismissive.  It turned out later she’d tried to send me a message telling me I should follow up with my OB-gyn, but at the same time, her staff members were calling me to try to set up a same-day appointment with her.  So, reasonably, I expected that she wanted me to come in.

So I got into the room with her and told her I was concerned about this strange early period, as it was totally abnormal for me.  I wanted to make sure that between the chiropractic adjustment and the potential nerve damage (which had not officially been ruled out) nothing weird was going on with my uterus.

And she looked at me like I had two heads.  “You know your insurance is going to charge you a lot if I do a pelvic exam on you, right?  Those are expensive.”

Her tone and her expression, though, were not out of concern. Instead, they seemed to be out of annoyance.

“The hospital discharged you for a reason.  And you’re still worried?”

In my head, I thought Why is this woman not just examining me?

She continued, “You know, a pelvic exam isn’t really going to rule out everything that could be wrong with your uterus.  For that, you really need an ultrasound” (which they weren’t going to be able to perform at her office).

We sort of stared at each other for a few seconds and finally, the ten years of being dismissed got to me.

I said, “You know, I have to be honest.  I don’t really feel like you’re taking this seriously.  I’m starting to feel like I shouldn’t have come here… why did you let me come here?  You should have just told me to go straight to the OB-gyn for an ultrasound.”

That’s when she paused, and gulped.  “I did tell you that… I sent you a message online telling you I thought that’s where you should follow up.”

Then she realized her mistake.  She’d assumed that I’d seen her message, and decided to come in to her office anyway, like some paranoid hypochondriac who wanted to be seen in two places, when one would suffice.  That’s why she was being so dismissive.

I felt the anger welling up inside me, but I’m proud of myself because I kept it classy.   I said, “So, without the ultrasound, we don’t really know what’s wrong?  So we can’t really say there’s nothing wrong with my uterus, can we?”

Embarrassed, she shook her head no.

And I’m telling you– I am so proud of myself for the way I handled this.  I kept it polite, but we both knew how much in the wrong she was.  I said, “I don’t mean to be rude, but I’m going to call my OB-gyn right now, before they go home for the day.  Because this is still potentially an emergency.”

And I literally took out my phone and called them right there, with her sitting in the exam room.

To be fair, although the doctor didn’t outright admit her mistake, she did apologize for “looking as though she wasn’t taking it seriously.”   She did nod her head in agreement as I told the person at the OB-gyn’s office that this was potentially an emergency.

But I will be switching primary care doctors now, because this was just too much for me.  A difference in philosophical outlook is one thing– but when it affects how my case is handled in a potential emergency situation, it’s time to move on.

End note:

After all this, I did end up speaking with the OB doctor who was on call that day– the same one who performed my surgery, actually– and she reassured me that there was nothing to worry about.  That it was just due to stress, and that I wasn’t in enough pain for it to sound concerning.  I ended up having an ultrasound anyway, in a non-emergency setting, and it turned out normal.  So, everything did turn out okay.

But I will still be switching, because enough is enough.  It’s taken me a long time, over the years, to believe in myself, and that I am worthy of respect.  Ten years ago, I don’t know that I would have been brave enough, or composed enough, to handle this situation the way I did.

So, like so many things to come out of that horrible weekend, at least everything turned out alright in the end, and now I can see it as a learning experience.   In a way, I suppose I am grateful for this, too.

Too much of a good thing: when people don’t really *get* pain science

I wanted to share a really important post with you all this morning, from the author of Chronically Undiagnosed.

She’s a therapist who is dealing with chronic illness.  Recently, she wrote about her experience attending a chronic pain support group that incorporated some of the theories of modern pain science… but did so very badly.

As someone who fervently believes in what pain science has to offer — it’s what originally inspired me to become a physical therapist– I have often felt many of her same frustrations, when people try to stretch pain science beyond the limits of its intended applications, or when they lump in their own personal beliefs about pain which have nothing to do with the actual scientific literature on the subject.

Reading her post, it sounds as though the social worker leading the class did have a basic understanding of pain science.

(By modern pain science, I mean the school of thought that says that pain is a function of our brains that’s meant to protect us, and as a protective mechanism, it doesn’t always work perfectly, or give us an accurate way to gauge what’s actually happening in our bodies. People can experience devastating injuries and feel no pain, or they can experience excruciating pain from injuries that are technically “minor.”  Pain scientists believe this knowledge can help us develop new treatment approaches, once we begin to tap into the fact that pain is here to protect us.  Some of the original proponents of this approach include David Butler and Lorimer Moseley).

It sounds as though Chronically Undiagnosed’s group leader did present some of these anecdotes, to prove that pain can be subjective.  But she did so in a way that was alienating to the group participants.

Chronically Undiagnosed writes:

“The instructors have cited reports of individuals who have either been injured and experienced no pain, or individuals who thought they were injured (but were not) and experienced extreme pain. One example was of a roofer who landed on a 6-inch nail that went through his steel toed boot who presented in the E.R with reports of excruciating pain. He was medicated for pain and the boot removed where it was discovered that the nail had gone through his shoe but between his toes, resulting in zero tissue damage. Additionally pictures of MRI’s were shown where a person had visible spine damage but no pain.

As someone with an advanced degree who has studied and taught research and statistics, I find fault with their examples. In a scientifically based research study, extreme results such as these are considered “outliers” and are not considered statistically significant. And as someone who has both counseled patients with chronic pain and experienced it daily for over 5 years, I find their assumptions to be not only scientifically incorrect but harmful to people experiencing chronic pain.

And now here come the people touting “modern pain science” as a breakthrough in treating pain. If pain is simply a perception created by the brain, then if we change our brains the pain should go away. When I expressed my concerns to the leader of the group she suggested that leading medical institutions in our country (such as Stanford, where I received “injections” that helped me) are “behind” in understanding pain.”

Reading about her experience made me really frustrated and sad, because I had a totally opposite experience when first presented with this information.

However, when I first came across it (under the guidance of my physical therapist Tim, and through watching physiotherapist Neil Pearson‘s lectures) I understood these stories– which ARE statistical outliers– to simply be examples illustrating how pain works.

They are extreme examples, but they demonstrate the fact that pain does not always provide an accurate indication of what is wrong in our bodies.  These stories are meant to educate, not to give people the impression that they ought to be able to magically “turn off” the pain in their brains tomorrow.

Following this, it sounds as though the social worker leading the group made another key mistake, one that I absolutely can’t stand:

She lumped her own personal beliefs about pain in with the theories of modern pain science, without making any distinction in between the two.

I’ve personally seen this before.  The first doctor who ever told me I had a heightened sensitivity to pain never actually told me about any of the neuroscience research behind this phenomenon (central sensitization).  Instead, she told me I was probably suffering from some form of psychological trauma, and that the only way for me to get better was through psychotherapy.

Years later, when I had finally discovered pain neurophysiology education, I found that the people actually researching modern pain science never talked about childhood trauma (or any other kind of psychological trauma).  They didn’t need to– the theory of pain as an imperfect protective mechanism was enough to explain so many of the things that could sometimes go wrong with it.

That’s not to say that no one, ever, experiences physical pain as a result of emotional trauma.  That’s not what I’m trying to say either.  But it’s wrong to be leading a group where you’re presenting people with the theories of modern pain science, and lump in your own personal beliefs about pain without making a distinction.

She did actually lump in other grains of truth.

Some of the other information Chronically Undiagnosed’s social worker presented is, technically, legitimate.

It is true that MRI’s are not always the best predictors of who will actually experience back pain.  There’s a great book, Back Sense, that talks about this.

In a nutshell, if you were to take 100 people off the street and take an MRI of everyone’s spine, you wouldn’t necessarily be able to tell, just by looking at the MRI’s, who was actually experiencing back pain.

We all experience some degeneration to our spines over time, but sometimes this degeneration can be symptom-less.

However, this information should never be used to tell a group of chronic pain patients they shouldn’t be experiencing any pain!

All of these bits of knowledge, which can be helpful– whether it’s pain science, or Back Sense– are meant to be one piece of the puzzle!

And they are meant to help illuminate aspects of patients’ experience.  They are meant to educate.  

They are not meant to blame people, or make them feel responsible for experiencing pain they shouldn’t be feeling!

I see this far too often in the field of pain science.

As a (hopeful) future physical therapist, I’ve followed a number of physical therapists, writers, and researchers on various social media platforms, hoping to learn more about how the field of pain science is evolving.

Unfortunately, I’ve had to go back and actually “unfollow” a bunch of people, because I see the same thing over and over again.  People will get annoyed and actually downright snarky about patients and fellow medical professionals trying to treat certain conditions which are the subject of controversy– the sort of “gray areas.”

One of these areas, in particular, is the sacroiliac joint.  There are a lot of physical therapists out there who don’t believe sacroiliac joint dysfunction is a real thing.

So I’ll sign on to Twitter, and find that someone I respected and followed to learn more about pain science is tweeting out some kind of derogatory commentary about how “the sacroiliac joint doesn’t really move” and what a “sham” it is that people are trying to treat it.

I suppose the evidence for sacroiliac joint dysfunction is really a topic for another post, however to me it’s just another example of people trying to take pain science too far.

Ultimately, I believe these physical therapists’ anger stems from a good place.  From their perspective, they’re probably tired of seeing other medical professionals “waste” patients’ time by treating them for musculoskeletal causes of pain, when they should be focusing on the nervous system.

But really, there are two sides of the same coin.

Yes, pain originates in our brains.  And our brains can shut pain off, in emergency situations.  

But that doesn’t mean patients’ pain isn’t valid.  That doesn’t mean that, once you put them in a 3-hour class where they hear about extreme examples of people not experiencing pain, they should automatically be able to “turn off” their own pain.

No approach will work if you don’t listen to people.  No approach will work if you aren’t kind.  That’s really the bottom line.

Pain science should be used to educate– not to deny the other potential reasons someone could be experiencing pain.

Just as MRI’s aren’t always accurate indicators of who will have back pain, it doesn’t mean that someone in excruciating pain shouldn’t have an MRI.

All of these things represent aspects of the truth, but no one piece should ever be a substitute for looking at the whole picture.

P.S. Please don’t worry, there are plenty of ways to learn about pain science from people who actually do get it!  

For more, you can check out my Resources section.

I also highly recommend Todd Hargrove’s article Seven Things You Should Know About Pain Science.

 

The doctor who *almost* helped me (How I developed central sensitization, Part 6)

Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong.  It’s not really necessary to the story, and I don’t want you to get bogged down in negativity.  The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist.  Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else.  Their approach is generally thought to be more holistic.  They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well.  It’s a pretty cool specialty.

And I was pretty much seeing the best one.  I loved Dr. V. the first time I saw her.  She’d won all kinds of awards for going above and beyond to help her patients.  And she was just so… nice.  She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.”  My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long.  I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed.  I just needed a place to go where someone could tell me whether or not I had an injury or not.  I didn’t always need to be referred to physical therapy, or start some new treatment.  Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it.  (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy.  She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years.  I would go and see them, but nothing ever really “clicked.”  Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain.  As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive.  It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured.  This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself.  A new part of my body would hurt (or an old one would start hurting again) and it would feel real.  It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V.  To be examined by an actual doctor and be told nothing was wrong.  It helped my nervous system feel “safe” again.  Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended.  Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my body.  The pain would be able to fade into the background.

And I was okay with this pattern.  It wasn’t ideal, but it was better than anything I’d found yet.  We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing.  I was okay with the holding pattern, but Dr. V. was not.  Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes.  And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment.  I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed.  Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day.  That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me.  And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that.  I started to cry and attempted to explain myself, but it didn’t matter.  Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment.   Her secretary, who I’d sort of become friends with, overheard the whole thing and poked her head into the room, gently reminding Dr. V. that my appointment was actually supposed to be for a whole hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference.  It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels.  This is why I like to remind people that central sensitization was actually discovered in rats.  It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist.  A lot of people are like that, actually.  They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her.  I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses.  It was #1: central sensitization.

That whole time– she could have just told me the name for it.  I didn’t even know there was one.  I could have learned about it myself– I could have Googled it.  It was discovered in 1983.  There was more information out there than I was given.

But no.  Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking.  I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what?  I think I’m sort of proud of myself for getting as far as I did, on my own.  After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson.  This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works.  It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!

Hope this was helpful!

What’s in my chronic pain toolkit?

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As I try to get braver about sharing this blog with the people in my everyday life (it’s been relatively secret up until now), I want to be sure I’m clear about the fact that there are absolutely still days when I’m in pain.

The purpose of my blog is not to tell you I’ve got it all figured out, or that there’s a truly easy solution.  I know that pain, on some level, is always going to be a part of my life.

The reason I write is to share with you what I’ve learned– and what I’m still learning.

One of the most important lessons for me has been that pain isn’t a sign that you’re crazy.  It’s actually your body’s way of trying to protect you.  Unfortunately it’s not a perfect system, and when pain gets out of control, its effects can be devastating– whether you’re experiencing pain from central sensitization or another cause, such as an illness, injury, or disease.

This is why I am such a vocal advocate for pain neurophysiology education (PNE).  This type of chronic pain treatment taught me to see my pain not as an enemy, but as one of my body’s protective mechanisms.  It was almost like an overprotective friend.

This shift in perspective made all the difference for me in going forward–  I learned that, just as my pain has an “up” dial, it also has a “down” dial that I had some control over.

***

However, I have other things in my pain toolkit, as well.

One of the things  I really swear by (which I’m sure most of you know by now!) is aquatic exercise.  Being in the water lets me get my heart rate up like nothing else, without having to worry about the risk of injury.

I have certain stretches that make up part of my daily routine.

I’ve learned to trust my love of music, finding that taking the time to listen to music I love  actually helps drive away my pain.

I’ve learned that if I stay hydrated, that makes a big difference in my pain, as well.

***

I’ve learned that actually, many of the joints in my body are hypermobile, not just my sacroiliac joints.  And this is another reason why so many parts of my body hurt.  So I have to be careful with my joints– my knees, my elbows, fingers, and wrists, in particular.   I have to keep my muscles strong and pay attention to the way I do things as I go about my day.

***

I’ve learned to tell when certain muscles in my body are becoming tight, and whether it’s an issue I can probably fix with stretching, or if I need to go back to my one and only trusted massage therapist.

It took me a long time to find someone who was able to use the techniques that were right for my body, and didn’t put too much stress on my hypermobile joints.  Now that I’ve found her, I appreciate her so much (thank you Lynn!).

***

And I have, at times, taken pain medication (Tylenol and Advil never could cut it for me).   I have written briefly about the time I took tramadol for back pain.  Contrary to so many of the articles you’ll read, it a) genuinely helped me, and b) I stopped it when I needed to.  I did not become addicted.

***

So my blog is about learning all that you can do to control your pain.  It’s also about learning to live with the knowledge that, despite your best efforts, you won’t always be able to control it.

You must develop your personal chronic pain “tool kit,” but you should also be prepared for the possibility that the pain may return, at times.  Because it can.  Despite what you know, when it comes back, it can wash over you like a wave, making it hard to remember what’s even in your toolkit.

But at those times, if you’ve already assembled your toolkit, if you’ve already taken the time to figure out what goes in it, you can remember it again; you can come back.  You won’t be lost; you won’t slide back to zero.  You’ve dealt with this once, and you can deal with it again.

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I read the most amazing article recently by author and vulnerability researcher Brene Brown.   It’s about staying true to yourself and charting your own way as an individual.

My favorite sentence, however, just happens to perfectly sums up what I’m trying to say about my experience with chronic pain:

“I’m an experienced mapmaker, but I can be as much of a lost and stumbling traveler as anyone else.”

So the reason I write here is to share my map with you.  I think that, at this point, I’m a pretty experienced mapmaker as well.  But it doesn’t mean I never get lost.

But I have my pain toolkit.   I’ve assembled it and I know it will always be there.  Sometimes, when I’m doing well, I begin to forget the memory of the pain.  But, if and when it returns, I know I can always circle back to the things I learned.

So I’m not trying to tell you that my life is perfect now– far from it.

I just think some of the things I’ve learned might help you, too.

Learning about central sensitization: the power of naming, and the future of pain treatment

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Whew.

I have really enjoyed writing my more personal posts recently– I love to tell a good story, and to feel as though my past experiences have some meaning.  (And I’ve really appreciated all your kind words, comments, and shares!).

But also, wow– some of those posts were very emotional for me.  Right now I’m kind of feeling the need to come up for some air.

So let me back up for just for a minute, and talk about some of the things I’m optimistic about, in terms of the big picture in treating chronic pain.

The more we know about central sensitization and the way pain works:

It gives us the power to name things.  

This is something I’ve been thinking a lot about recently.  Sometimes, there is a healing power that comes just from being able to put a name to something; to receive a diagnosis, and know that you aren’t the only one.

As I explained in my last post, when I finally learned the term central sensitization, it helped me to feel validated, and so much less alone.

Sometimes healing can come not from completely “fixing” your condition, but from being able to make meaning out of it for yourself; constructing a coherent narrative that makes sense.

And of course, it’s much easier to make sense out of something when you actually know what it is.

Having an actual diagnosis can help us explain ourselves to others

At least, I assume it does.

As I have mentioned in past posts, the truth is that I have often struggled to articulate what’s happened to me in the people in my life.

Of course, it didn’t help that I didn’t really have an explanation that made sense for it myself, for most of the time, or that even now that I have an explanation, it’s a condition that’s still fairly unknown.

This is why I am doing my best to raise awareness and get the word out.

The more we, as a society, understand about pain, the more treatments we can develop.

There is just so much to say here.  The more I learn about pain, the more and more I realize I don’t know.  It’s really such a fascinating subject.  I try to talk about some of the highlights on my blog, just to give you a sense of how broad the subject really is.

But in a nutshell, our growing scientific understanding of pain can lead us to all sorts of new treatments, such as:

New pharmacological approaches: I’ve recently discovered Gracie Gean’s Youtube channel, and her story about receiving ketamine infusions to treat CRPS.  I totally recommend checking it out!

Brain imaging and biofeedback: I’ve written before about the work of Christopher deCharms and others at Stanford University, who use functional MRI to teach patients to mentally “turn the volume down” on their pain.

Pain neurophysiology education

And of course, once you understand that pain is one of your body’s protective responses– it’s actually there to keep you safe, not make you miserable– this can help you learn to work with it, not against it.

This is the premise of pain neurophysiology education, which I talk about in the “Calming Your Nervous System” section of my blog.

When I was in the midst of my struggle, I happened to find a physical therapist who had taken a PNE course with Neil Pearson, and that was the moment things really changed for me.

I learned to view my pain not as an automatic indicator that something was wrong or broken in my body, but as my body’s attempts to protect me.  And, each time something hurt, it was possible my body was overreacting, like a jumpy alarm system, or an overprotective friend.

This helped me to mentally take a step back when things began to hurt, and re-evaluate what I intellectually thought the pain was likely to mean.  And even just realizing that I had the ability to do this– that pain didn’t always have to mean something was wrong– helped me to begin to end the cycle I’d been caught in.

So, that’s all for now.

I’ve got a bunch of posts planned for the next few weeks that I’m really excited about.

I’ve also recorded a podcast interview with Matthew Villegas for The Capable Body Podcast about my experience with pain neurophysiology education.  Although I was afraid I sounded super awkward, Matt assures me the episode will be good!  It should be coming out sometime in September– I’ll be sure to let you know when it does.

Stay tuned!