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:

How I developed central sensitization: Part 1

Here’s a post I’ve been meaning to write for a long time: the story of how I personally developed central sensitization.

If you’ve been reading my blog for a while, you’re probably aware that central sensitization occurs as the result of some sort of insult to the central nervous system.  Basically, if the body gets enough practice sending pain signals, it gets “better” at it– meaning you start experiencing pain more intensely, with less provocation.

So.  How did it happen to me?

As I’ve touched up in previous posts, my high school years were pretty rough.  Basically, a bunch of bad things happened in my life, too close together for me to know how to deal with.  When I look back on that time, it’s like my thoughts and emotions were tangled up in one big knot– a knot it would take me years to untie.

At the time, one of the ways I coped was with exercise.  I struggled with depression, and the endorphins I got from exercise were one of the only things that made me feel normal.  That one- or two- hour window each day after my workout was the only time I felt like the clouds lifted, and I could think clearly.

The other way I coped was by restricting my calories and keeping my body at an unhealthily low weight.  I’d perceived myself as being a little bit chubby at the time the bad things started to happen, and being skinny was part of the new me.  Paradoxically, with each ounce of flesh I was able to strip off from my bones, I felt I was adding a kind of layer of “protection” around me, ensuring that things couldn’t go back to the way they had been.

So, I was starving myself, and running an average of 40 miles a week.

***

I ran for my school’s cross-country and track teams, and before I go on, let me say that I loved running for its own sake.  And I was good at it.

But I took it too far.  For a while, my body’s natural ability allowed me to excel even as I got skinnier and skinnier.   I was hitting faster and faster times– winning medals, even– as more of my skeleton became visible.

Obviously, this was a recipe for disaster, and eventually I developed compartment syndrome in my lower legs.  It’s a condition that’s somewhat similar to carpal tunnel– basically, I had a lot of fluid being trapped inside of my lower legs.  I’ll write more about compartment syndrome later, but for now, let’s just say that it got worse and worse until I’d gone from almost being able to run a five-minute mile to barely being able to walk.

I suffered from compartment syndrome for the next two years before finally deciding to have surgery, and wow– I really wish I could take that decision back.  I wish I’d just had surgery sooner, because it really solved the problem almost immediately.

However, at the time, my orthopedist had suggested I try more conservative forms of treatment.  None of them really worked, but on some level, I was lost in my own inertia.

I had been trying, and trying, and trying for so long– forcing myself up at 5 am to work out, when I’d barely been able to sleep the night before because I was so hungry.  I was just done.

***

Those two years, from age 17-19, are somewhat of a blur.  I was still struggling with depression, although things improved dramatically after I graduated from high school.  I actually tried to work out in a pool but wasn’t really feeling it– ironic, because all these years later, the pool has become my second home.  But at the time, I was just too depressed to think or function clearly.

So I waited those two years, sometimes trying conservative treatment methods, sometimes going to physical therapy, sometimes working out in a pool.

The compartment syndrome was not so much excruciating as it was frustrating.  I knew where the limits were pretty clearly– how much I could push myself before the feeling of pressure built up in my lower legs, and my feet started tingling.

But it was still a constant buzz in the background, like an annoying mosquito buzzing around my ear for those two years.  I couldn’t forget about it– couldn’t even stand in line at the movies.  Whoever I went with had to stand in line while I waited on a bench.

***

I tried to go to college like all of my friends.  I actually went to a large Division I school, thinking somehow I’d get back into running.  But really, things were getting worse, and it was becoming harder and harder to walk.  There wasn’t adequate public transportation around campus, and I’d have to decide whether I wanted to walk to the library that day to get my books for class, or if I wanted to actually go to class.  My body couldn’t do both.

That’s when I realized this couldn’t go on, and decided to come home and have surgery.

***

The surgery itself was not very invasive at all.  The place where my orthopedist had to make a few incisions was very superficial (aka close to the surface) so he didn’t have to dig around too much.  I came home from the hospital that same day, and although I spent the following day completely knocked out with narcotic painkillers, by the second day I wasn’t even using my crutches (although I still had casts).

Everything seemed normal right after the surgery, although from what people have told me, surgery like that can be a big trauma to the body.

I didn’t notice anything right away– in fact, I was healing pretty well.  But, as I later learned, it’s possible that everything my nervous system had already been through– the constant bombardment from the compartment syndrome, as well as the surgery- would have a delayed effect.

***

As luck would have it, I had developed acid reflux right around then.  My doctor suggested I try sleeping propped up by pillows at night, so gravity could keep the acid down.

Big mistake.  I woke up after one night in absolute agony.  I had completely thrown my back out– the whole thing felt like one giant muscle spasm.

I had never had such a silly, simple little thing cause so much pain before.  The only injuries I’d had before had been serious running injuries, that came from pounding my legs into pavement 40 miles a week.  But this silly, little simple thing actually had me in excruciating pain.

And this– THIS.  After everything I’d been through, this is how my chronic pain problem started.

Looking back, I can see that it probably wasn’t just the issue of throwing my back out.  Instead, it was probably a combination of factors– everything my body had been through, coming together to create an overwhelming effect all at one time.  My nervous system had just had too much.

Of course, I didn’t know what it was at a time.  I had never heard of such a thing as central sensitization, and in fact, I wouldn’t– not for another six years.  I had a long road ahead of me.

To be continued in Part 2.

Reasons why I write

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Every once in a while, I freak out.  Why in the world am I putting all this personal stuff about my life online?

I woke up this morning feeling like I needed to update my blogging “Mission Statement.”  I wasn’t sure if I was going to share it or not, but now I feel like it belongs here.  So, here are the reasons why I write:

To share what I’ve learned.

To prepare for my future career and crystallize my thoughts.

I’ve had to learn so much and go pretty in-depth on certain topics just to heal myself.  Now, I think it’s pretty clear what my future specialties will be as a physical therapist, and I want to make sure I remember exactly where I’m coming from and what motivates me.

I don’t believe the traditional (insurance-based) physical therapy model is the best.

Honestly, in an ideal world, I wouldn’t have had to learn all this stuff.  Sure, I’m interested in it, but I also had to learn to take things into my own hands.

Even the times I found someone to really help me, it was never quite enough.  They were always under pressure from insurance companies, or company they worked for, to get results and demonstrate that I was progressing by certain markable bench lines each week.

In real life things are not always that clear, especially when you are dealing with a chronic condition.  People have setbacks– it doesn’t necessarily mean that their treatment isn’t helping.  It’s just the way things go.  External factors occur in our lives; our individual health fluctuates.

I recognize there are gaps in our current system, and I see how those gaps have failed me.  

I am putting this information out there so other people don’t have to spend the same amount of time looking for it that I did.

There is no good reason why things took me this long.  Honestly.  It took me years –and appointments with more medical professionals than I care to recall right now– to find the answers I needed, both for chronic pain and my SI joints.

There was no real reason, other than the first few doctors/PT’s I saw didn’t know what they didn’t know, so to speak.  So they left me with the impression nothing more could be done, when that was far from the case.

So now, I put my answers out there, for anyone who is desperately Googling the same things I used to.  

I don’t want it to take you that long.  It’s the best way for me to fight against that sense of pointlessness; to think that at least, maybe my experience can spare someone else what I went through.

I want to turn my experiences into something good.  

For a while, I tried to block out the enormity of my experience, and not acknowledge the big picture of how much things sucked at times.  It was the only way I could get through it at the time; to tell myself things weren’t that bad, to block some of it out.  To ignore how much I was missing out on.

But now that I’m a little bit older and wiser, my outlook has changed.  I try to accept what’s happened, and even try to find the good in it; the lessons learned.

There is good in it.

Luckily, through all of this, I discovered I truly do love learning about the human body.  I had never really thought of myself as much of a science person when I was younger.  In school, I gravitated towards the humanities and social sciences because I felt so passionately about social issues (and I still do).  And when you’re that age, I think you sometimes feel pressure to put yourself into a certain category.  I was a “humanities” person– I didn’t know I could also be a science person.

Educating myself– and others– on the science of the human body allows me to see how far I’ve come.

I haven’t written much about this yet, but when I was younger I put my body through the ringer.  I had an eating disorder and I exercised way too much.  Refusing to listen to my body caused me to develop the injuries that set off this spiral of chronic pain.  So it’s fulfilling for me now– almost meditative– to learn about the body from a scientific perspective, and to help other people find their way to a healthier life.

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So I write:

To gather and clarify my thoughts;

To record the useful information I’ve already learned;

To share things that you might find helpful, some of which took me years to find;

and to let others know that, despite all of what I’ve been through, it’s actually possible to come out on the other side.

I hope what I write is helpful for you.

An Update on Life with One Ovary

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

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

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

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

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

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

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

***

Physical Symptoms:

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

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

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

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

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

Mood/Emotions/How Do I Feel?

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

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

Blame/Doubt

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

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

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

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

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

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

Fear of it happening again

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

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

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

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

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

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

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

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

So, that is where I’m at right now.

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

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

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

My two previous posts on my surgery:

So… I lost an ovary

Beware the Red Herring (follow-up post)

The piece that didn’t fit

When I was young, all I wanted was to fit in, to be perfect.  To do what adults expected of me.  I never had a single cavity, I never missed the school bus.   I was always teacher’s pet.

Then, when I hit adolescence, the reverse.  My depression; my eating disorder; I couldn’t function, couldn’t fit in to any kind of mold.  I missed school; my grades suffered.   A few teachers saw who I really was, but in general, I don’t think anyone would have considered me teacher’s pet.

I (mostly) came to terms with these issues…. right around the time my health issues began.  So, really, I have always had trouble fitting in to some kind of external mold; to meeting the expectations of those who’ve never known what it’s like to physically suffer.

Even as a patient, I have come up against the feeling that somehow, I am not meeting someone else’s expectations.  My once-favorite doctor once grew frustrated with me for still saying I was in so much pain, and told me she had patients with much worse problems than me, and basically told me not to come back to her office.

(I have been meaning to write more about this doctor, because it’s from reading copies of her office visit notes that I first came across the term “central sensitization.”  Yet she never actually said the phrase to me– instead, she was one of the people who told me there were psychological explanations for my pain, and kept telling me to go see a therapist.  It’s so strange–she knew the term, but didn’t seem to fully understand what it meant).

I had a similar experience when I was “lucky” enough to become a patient at a well-respected pain management clinic run by a major Boston hospital.  I ran into conflict, right off the bat, with the physical therapist who ran the exercise sessions, because she didn’t agree with my rational for wanting to do a warm-up before exercising.

This is something my high school running coaches– in fact, even my gym teachers, all through school– had always drilled into my head.  Do a warm-up, or you’re much more likely to get injured.  Yet here I was, at a place for the already-injured, having someone tell me that I was “causing problems,” simply for wanting to take care of my body.  (There wasn’t enough time for me to do a warm-up and get through all of my exercises… which I later came to understand that she probably needed me to do, in order to get reimbursed by my insurance company).

So basically, from the age of 14 on, I have been familiar with the feeling of not meeting other people’s expectations… of not even fitting into any kind of mold they can understand.

But you know what?  I’m okay with it.  Because it’s this constant feeling of not fitting in, of being forced to look outside of what’s conventional, that has driven me to discover new things.

How long would it have taken me to discover the term “central sensitization” on my own, if I hadn’t decided to take matters into my own hands and request copies of my records?  I have no idea.  I do know it never came up in any of my science classes, except for about a 5-second mention in one of my neuroscience lectures.  (And if I wasn’t already familiar with the term, I might have missed it).

I do believe that I will have the power to help people someday as a physical therapist, and I think my specialty, if you can call it that, will be to help the “hard cases.”  The people who couldn’t be easily helped, and who, like me, didn’t fit easily into some kind of mold.

And it’s my experiences of not fitting in, of being forced to look “outside of the box” for answers, that will allow me to empathize and help them the most.

…my seeming failures were really just weird-ass portals to something beautiful… all I had to do was give voice to the story.

I am including this amazing talk by the writer Lidia Yuknavitch above, because ever since I discovered it the other night, I haven’t been able to stop listening to it, and she really inspired me to get my thoughts down into this post.

In her talk, Lidia describes how the many “failures” in her life were actually just the beginning of something new… it just took her time to begin to see them that way.  And, she says, if she had given herself permission to “belong,” to believe in herself sooner, she might have been able to recognize them for what they were sooner.

She has so many great quotes– you really have to watch it for yourself– but here, I want to make sure I record:

There’s a myth in most cultures about following your dreams. It’s called the hero’s journey. But I prefer a different myth, that’s slightly to the side of that or underneath it. It’s called the misfit’s myth. And it goes like this: even at the moment of your failure, right then, you are beautiful. You don’t know it yet, but you have the ability to reinvent yourself endlessly. That’s your beauty.

If I could, I’d go back and I’d coach myself. I’d be exactly like those over-50-year-old women who helped me. I’d teach myself how to want things, how to stand up, how to ask for them. I’d say, “You! Yeah, you! You belong in the room, too.” The radiance falls on all of us, and we are nothing without each other.

That’s it, right there:

The radiance falls on all of us, and we are nothing without each other.