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

Follow my blog with Bloglovin

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 bod.  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 took my side, poking her head into the room and gently reminding Dr. V. that my appointment was actually supposed to be an 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!

Seeing things clearly, without that added layer of judgement on top

I struggled with what to say on my blog this week, but I finally landed upon this idea as the thing that resonated with me at the current moment.

Something I’ve been realizing, more and more every day, is how much time I’ve spent judging myself for the problems I’ve had.  Not actively trying to solve them… just judging.

On some level I didn’t trust myself.  After all all of my difficulties in getting diagnosed and treated… at some point, I developed the belief that whatever health issues I was having, no one would really be able to help me.  My issues would probably always be too complex for any one person to truly understand.

From there, it became a self-fulfilling prophecy that played out from one issue to another.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.   I didn’t really believe there were answers out there, so I didn’t try that hard to look.  I gave up before the fight was over (until things got so bad that I finally didn’t).

Now I realize that, just because other people doubted me, I didn’t have to doubt myself.  And maybe, just maybe, I didn’t have to wait for things to get so bad before I took action.

In a way, my issues are too complex for any one person to understand, other than me.   I did have to step up, do my own research, and keep track of so many things myself.  But now I see that that’s a reflection on our health care system, not on me.

Everyone is rushed; insurance companies don’t pay for long enough visits, let enough adequate treatments.  (I personally feel that most of these efforts to reduce costs on the front end ultimately end up driving up costs on the back end, as people develop more serious conditions that could have been monitored or treated before they became more serious.  But I digress).

There was never any real reason for me to lose faith in myself.  My problems were real, and they had real answers.  (And you know what?  Even if they were in my head, mental health concerns deserve to be addressed too).

It’s like that quote from Eleanor Roosevelt:

“No one can make you feel inferior without your consent.”

For so long I gave so much of my power away… why?

There are so many bigger things happening in the world.  Why am I wasting time judging myself and holding back, when I could actually be contributing to something larger than myself?

For anyone who’s been struggling to make sense of what’s been going on in the world, I stumbled upon another amazing quote today, that was just exactly what I needed:

22195474_1582684825088140_2310980932586532929_n.jpg

I love this, so much.  Do justly.  Love mercy,  Walk humbly.  Nowhere in there does it say “second-guess yourself for trying to heal and then do nothing.”

I’m done trying to see things through the lens of “perfect” or how things “should be.”  I want to see things clearly (both in terms of the way I see others, and myself).

Judging yourself is really just a waste of time.

I want to have compassion for others, and maybe, for the first time in my life, also for myself.  I guess right now I’m learning what that means.

***

This post isn’t supposed to be about just me (although it kind of seems like it, now that I read it over).  It’s actually supposed to be about getting “me” out of the way.  To stop getting caught up in a cycle where I judge myself instead of doing things, for myself or for others.

If you’re reading this, I hope you know what I mean, and that maybe this post was helpful to you, too.

What’s in my chronic pain toolkit?

IMG_0917 (2)

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.

IMG_4191 (1).JPG

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.

Healing our bodies, and the things that ripple across generations

IMG_3999

A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

***

Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

***

I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

***

I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

***

Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

IMG_4091

 

 

Being okay with uncertainty

IMG_3940

When I first started this blog, I was angry.  I never wrote about it, because I didn’t want to bring people down, but I was sick and tired of trying to explain my health issues to the people in my life, and feeling like they didn’t believe me.

Maybe you can’t see the anger, because you aren’t me.  But when I look back and read my earlier posts, I see the it in between the lines, in the way I wrote.  How sure I wanted to be of things; how determined I was to prove that things were, in fact, the way I understood them to be.

The funny thing is that now that I’ve taken more and more science classes, my perspective has changed.  The more I know, the more there is I realize I don’t know.  And the more I’m actually okay with that.

***

For example, one of the things I’ve written about from time to time is how researchers are beginning to use brain imaging to study chronic pain, and even to develop new treatments for it.  This is, of course, super promising research, and I’m really excited about it.

However, one of the first posts I wrote about it, I’ve since had to significantly edit.  That original post was about how I hoped that, someday, doctors would be able to use brain imaging to “test” people for pain hypersensitivity, and prove that they had central sensitization.  This, I imagined, could be used to validate patients’ disability claims, or prove that they weren’t faking it.

The more and more classes I’ve taken– and I’ve had some really great professors, who went into the ethics of research– I’ve come to realize why using brain imaging as some sort of test wouldn’t be ethical.  The body is too complex; our testing too imperfect, to allow it to be used to potentially deny someone treatment.  People with legitimate pain could still fall through the cracks.  That’s why these brain scans should probably only be used for research and developing treatment.

That’s just one example of how my perspective has changed– knowing that we may never have a definitive way of proving who is in pain or not.  I’m more comfortable with uncertainty now, because I’ve learned so much more.

I have a much better sense of where we stand now with scientific research and where we are going.  I’ve also made a lot of changes in terms of the people I choose to have in my life.

So from where I stand now, the idea of not being able to “prove” myself is no longer one of my biggest fears.

***

Something I’m learning is that you can learn a lot about people by looking at what they choose to emphasize.

For example, I once had a roommate who’d been bullied for being overweight as a child.  Of course, as an adult, this person was obsessed with clothes and makeup, and never left the house, even to make a quick run to the store, without making sure she’d done her full beauty routine.

And maybe it was the same with me– in my anger, I needed to formulate some sort of certainty about central sensitization and chronic pain, because it gave me a sense of the stability that I was lacking.   Maybe that’s why the idea of a “test” appealed to me– it offered what I wished I could provide to the people in my own life: unequivocal proof.

***

Of course, I still believe in learning about central sensitization.  No question; that is what has most empowered me.  Knowing what the problem is, and naming it: to me, that’s the first step on the road to healing.

What I’m really remarking on is the paradox: the more I know, the more I am okay with what I don’t know.

I no longer need to prove anything, so not having all the answers doesn’t scare me anymore.

 

Maybe my weaknesses aren’t weaknesses. Maybe they are strengths.

21105481_938749316908_3692232005439858376_n

When I first started this blog back in 2012, I kept it largely a secret from the people in my life.

I wanted to help people struggling with the same things I’d been through, but I was afraid of the consequences of putting so much personal information online.

After all, wasn’t putting a long list of all my health issues, and detailing my sometimes-inability to get through work or school just giving potential future employers a reason to not hire me?

But as time has gone by, I’m starting to see things differently.

***

Now, this post isn’t meant to be just about me.  I’m not trying to come on here and just brag about how great I am.

But the more I write, and read other blogs, and interact with other people sharing their own stories, the more I realize just how much courage it can take to really face the cards you’re dealt, and try to make the best of a rough situation.

And that maybe, just maybe, other people will be able to see that about you.

***

I stumbled upon a J.K. Rowling quote recently that I really loved:

“It is our choices, Harry, that show what we truly are, far more than our abilities.”

We are more than the sum of what our bodies can or can’t do.  I believe we all come into this life with certain lessons to learn and challenges to face, and physical limitations are one way in which we do that.

However, we can’t always count on others to immediately understand, or know what we are going through.

Which has led me to wonder…

What if we told our stories more, not less?

Will a future employer really look at my blog and count up the number of times I said I wasn’t feeling well?  Or will they look and see that I love to write, and that I’m doing my best to explain scientific concepts to a general audience, in the hopes that it might help others?

Will they really go through and count the number of years it’s taken me to get through all of my grad school prerequisites?  (Well, probably).  But, if they read through some of my posts, they should be able to see that, on the subject of chronic pain, I’ve basically already been to grad school.

A different kind of grad school, maybe, but I think you can certainly call what I’ve been through “Advanced Study.”

I speak from experience… I practice what I preach.

IMG_3106

I’ve been trying to get more comfortable with putting photos of myself up online… here’s a nice dark blurry one!

***

I’ve had a number of misunderstandings recently with people I care about.  The misunderstanding arose because I thought they already knew my perspective and what I was going through, and then it turned out they didn’t.

It’s led me to the realization: how can I expect people to know if I don’t tell them?

Maybe keeping quiet and assuming people will be able to read between the lines isn’t the right thing.  I generally try not to complain… but I’m starting to realize that maybe I’ve taken it too far, into not actually sharing my reality with others (funny, because I CERTAINLY share it online!).

My new goal, going forward, is going to be to speak my truth, honestly and compassionately.  And if chronic pain is part of my truth, then I will not filter it out. If people are truly going to understand me and where I’m coming from, maybe they actually need to know.

***

Part of what’s helped me get to this point is that I’ve recently discovered so many great writers/bloggers/poets, who have put into words not just what I’m feeling, but a place, emotionally, where I feel I ought to be going, if that makes sense.  I didn’t know it was my goal, or what lay ahead, but when I saw someone else put it into words, I recognized it.  My next lesson; my next place.

I had so many quotes I wanted to share with you in this post, however I’ve settled on this one from the amazing writer/poet Bianca Sparacino.  I discovered this quote from her a few months ago and it’s had a profound impact on me ever since:

bianca sparacino express.jpg

 

I want my communication to be clear, focused, and kind.  I want my words to reflect the truth.

Those of us struggling with chronic pain don’t want to complain.  We don’t want to overwhelm others with negativity.   However, we also need to remember that the people in our lives are not mind-readers.

If you really want to share your story with people, you can’t edit parts out.  It might be a temporary solution, but it only lasts for so long, before your longing to be understood will re-surface.

So instead of telling the truth by accident, or when we feel we have no other choice, why not just… say it?

 

 

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:

What I really want you to know

I never know quite what to call the posts in which I share a video.

Every title I think of sounds either click-baity or boring.  Like for this one: “Mayo Clinic doctor explains central sensitization.”  “Awesome video on central sensitization,” etc. etc.

In this day and age… what do you call something that truly is a “must-watch?”  The term is so overused.

But I really, really want everyone to watch this.

***

Have you ever held something in for so long that, when someone finally validates the way you feel, you end up crying?

That was kind of how it was for me, with this.  This video was so great it actually made me cry.

I know a lot about central sensitization, but, honestly, most of that is from my own research.  (You can check out the articles and researchers I cite in my Resources section, particularly under “Scientific Articles”).

Of course, I’m grateful to have access to these articles, and of course, to the scientists who wrote them.  (Not to mention the education that allows me to understand them– big shout out to my neuroscience professor!).

But when it comes to understanding central sensitization as a scientific concept, there have been many times when I’ve felt pretty alone.

Maybe I shouldn’t feel this way, because, largely, I’ve found the answers I need– my life is so much better since I discovered pain neurophysiology education and the work of Neil Pearson (thank you again, Neil!).

But what I’m talking about is the emotional aftermath of what I went through in all the years before; all the time I spent feeling misunderstood.  All the conflicts and arguments with friends and family over the “weird” symptoms no one could understand… I have sometimes felt very, very alone in trying to articulate exactly what’s happened to me.

***

That’s a big part of why this video blew me out of the water.

Here, Dr. Christopher Sletten, who runs the Pain Rehabilitation Center at the Mayo Clinic in Florida, describes, in patient-friendly language, exactly how central sensitization can happen, and the myriad ways it can affect a person.

***

On my blog, I talk mainly about pain.  That’s been my main symptom, and in some ways it’s the clearest and easiest to write about.

But central sensitization can cause all sorts of bodily sensations to become amplified.

As Dr. Sletten explains, it can make lights seem brighter, and sounds seem louder.  It can make you dizzy.  It can cause digestive upset.

It can really affect all of the sensory input that is meant to help you protect your body and guide you through the world.

And this, of course, will make you look crazy to those who don’t understand.  It can even make you look crazy to yourself.

***

So I love, love, LOVED the part around the 7:20 mark where Dr. Sletten asks, “So how much of this is psychological?  NONE.”  Bam.

“The emotions are a symptom, not a cause.”  YES.

How I wish the people in my life had believed this, all the times I tried to explain it to them ten years ago.

I knew I wasn’t crazy; knew it wasn’t all “in my head.”  But I could never find the right words to convey my reality; to convince people who’d already made up their minds.

It doesn’t mean they didn’t care.  But there’s a difference between knowing you’re cared about, and feeling truly believed and understood.  There’s quite a big difference, actually, and it can hurt to never get that second part from the people you love.  To know they’re tolerating your “craziness,” instead of seeing you for who you really are.

***

I wasn’t really planning on writing such a personal post today.  I seriously LOVE the science behind this stuff, so I was planning to take some notes on important concepts and get more into the nitty-gritty.

But I guess this is the part of my story that I needed to tell today.  More of the nitty gritty will have to come later on.

***

The one sciencey thought I wanted to leave you with right now is that this video provides some great insight into how central sensitization can lead to what are called central sensitivity syndromes.

After all, it’s not just pain.  It’s never just any one thing.  It’s the fact that the sensory information that’s supposed to give your brain cues as to how to respond to your environment is coming in way too “loud.”

This can create all sorts of different symptoms and sensations in different people.  It can lead to chronic pain; some people call it fibromyalgia.  It can cause phantom limb pain; it can cause Complex Regional Pain Syndrome (CRPS).

It can cause lead to diagnoses whose names imply more of a specific focus: chronic pelvic pain.  Temporo-mandibular joint disorder.  Irritable bowel syndrome; other digestive issues.

But they all fall under this umbrella term: central sensitivity syndromes.   Despite having seemingly very different symptoms on the surface, all of these conditions can share a common cause, at the level of the nervous system.

***

So that’s all for now.  I hope you get as much out of this video as I did.  (And if you do, I hope you spread it around– I seriously want everyone in the world to watch it!).

As always, if you have any thoughts or questions for me, you can leave a comment below or email me!

 

 

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:

 

How I developed central sensitization: Part 3

Okay, I still can’t believe I’m writing about this part of my story publicly.  But it seems like I’ve reached the point in my life where my need to say something is beginning to outweigh my fear.  So here we go:

***

I was 21.

I’d finally had leg surgery, which had successfully cured my compartment syndrome.  And now I’d just stopped needing to take painkillers for my back.  I’d completed three semesters of college, and I was excited to keep moving forward and try to live a normal life.

These posts have been pretty heavy so far, so I want to take a moment and actually reassure you that this was a really positive time in my life.  I loved my new school, and my new friends, and I loved what I was studying.  I was completely at home in the socially conscious, hippie atmosphere of Western MA–  I felt as though I was finally where I was meant to be.

But something had changed within my body.  Even though I no longer had a major injury, it seemed like every little thing I did could set off some kind of pain.

I’d open a heavy door, and my elbow would hurt afterwards, for days.

I’d do a lot of typing, and my wrists would burn so intensely that I’d start wondering if I had carpal tunnel.

I tried to get back into running, but the first time I reached a good speed, I developed a stabbing pain underneath my right shoulder blade and had to back off.

At the time, I’d had no idea this could have anything to do with the way my nervous system was functioning.  It just seemed like my body had changed; like it wasn’t able to heal from things anymore.

I actually started to wonder if there was something fundamentally wrong, deep in my tissues, and now I was somehow prone to getting injured really easily.  It seemed like every little thing I did created more pain.

***

I didn’t like this new body, and I wanted my old body back.

I remembered what it was like, before my surgery and this whole episode with “glass back syndrome”– before pain had encapsulated my whole body.

I’d had other injuries before, of course– shin splints, as well as a partial tear of my hip flexor tendon during my freshman year of high school.   But what had made these injuries different is the pain always stayed in one place, and when the injury had healed, I was strong.

Now my body was profoundly different.  I felt like it couldn’t withstand anything; couldn’t stand up to life.  Every little thing made me feel like something was broken, or that I was “injured.”

If I opened a door wrong, or carried something heavy, or went for a walk when it was super cold out— every little thing I did seemed to create a “micro-injury.”  I’d have pain, or pins and needles, or some other weird symptom, and feel like I couldn’t use that part of my body for days.

My once powerful body, that had carried me up hills, and down rocky slopes– the body that made half of the girls on my cross-country team hate me, because I was always #1– somehow, right as the rest of my life was starting to get back on track, it had turned to glass.

To be continued in Part 4.

To start from the beginning of this series: