Tag: invisible illness

Central Sensitization, My Story

How I developed central sensitization: Part 5

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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:

Central Sensitization, Chronic Pain, Creative Writing, Inspiration, Nervous System, Pain Neurophysiology Education, Pain Science, Treatment Approaches

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!

 

 

Central Sensitization, Favorites, Inspiration, Interesting Articles, My Story, Nervous System, Pain Science, Treatment Approaches

What I really want you to know

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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!

 

 

Central Sensitization, Chronic Pain, Creative Writing, My Story

How I developed central sensitization, Part 4

sunlight in winter

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:

 

Central Sensitization, Chronic Pain, Creative Writing, My Story

How I developed central sensitization: Part 3

sunlight in winter

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:

Central Sensitization, Interesting Articles, My Story, Pain Neurophysiology Education, Pain Science, Treatment Approaches

Shedding light on central sensitization

sunlight in winter

Hi everyone!  Hope you’re all having a great summer.

I just wanted to let you know that I recently added a new section to my blog, to focus on central sensitization.

When I began this blog in late 2012, I started out writing about the topics of chronic pain and fibromyalgia, terms which most of my readers are more familiar with.

However, over time, it became more and more important to me to focus on some of the scientific research that’s been shedding light on the nervous system phenomena behind chronic, persistent pain.

Central sensitization has had a huge impact on my own life, one that’s stretched far beyond the initial injuries that caused me to develop it in the first place.  (Basically, central sensitization occurs as a response to some sort of trauma to the body, leaving the person with a heightened sensitivity to pain long after any physical injuries have healed).

I’ve recently begun to tell the story of “How I developed central sensitization.”  It’s a series posts about how, after years of abusing my body as a high school athlete with an eating disorder, I finally stretched my nervous system to the breaking point.

I’ve also written a series on my experience with pain neurophysiology education, an approach to physical therapy that taught me to better manage my condition.

These stories are incredibly personal to me, yet I really believe that central sensitization is an under-recognized problem, and I’m determined to raise awareness.  It took me years of suffering before I even knew the name of my condition (or was able to get help treating it), and it shouldn’t have to be that way.

So on my blog, I’ll be telling stories from my own personal experience, well as highlighting some of the articles, research and researchers that I find inspiring and noteworthy.

I’ll still be writing about chronic pain and fibromyalgia, recognizing that there are many factors that contribute to each patient’s experience with these conditions.

Ultimately, I believe that the more we know as patients, the better we can advocate for ourselves.  That is why I believe so strongly in raising awareness of this issue, both in terms of the scientific discoveries being made, as well as sharing the impact it’s had on my own life.

Here are some of the posts I’ve written on central sensitization so far:

What is central sensitization?

The nervous system and chronic pain

How I developed central sensitization: Part 1

How I developed central sensitization: Part 2

How Clifford Woolf discovered central sensitization (and why you shouldn’t blame yourself for chronic pain)

Central Sensitivity Syndromes

Todd Hargrove: Seven Things You Should Know About about Pain Science

Let’s give this a whirl: explaining a scientific article in plain English

All of these, of course, are listed on my new “Central Sensitization” page.

Other great links:

Central sensitization in chronic pain (from Paul Ingraham at PainScience.com)

Dr. Sean Mackey: An Update on Fibromyalgia (really interesting talk from a Stanford researcher on the role of central sensitization in fibromyalgia).

and a lot more within my “Resources” section (if you haven’t swung by in a while, I’ve been adding a lot to it).

***

I hope the things I write and link to are helpful to you.  As always, you’re welcome to contact me with any comments or questions.   (You can comment below or send me an email!).  Happy reading!

Central Sensitization, Chronic Pain, Creative Writing, My Story

How I developed central sensitization: Part 2

sunlight in winter

Continued from Part 1

My doctor said I had what was called “glass back” syndrome.  Every muscle, from my neck to my lower back, was locked in spasm.  Even the smallest movement could set off a domino effect, each muscle triggering the next, until my entire back would feel like a blaze of pain.  I was so sensitive to movement, it’s as if I was made of glass.

The only time of day when things didn’t hurt was when I first woke up in the morning.  For those few seconds before I moved, I would feel okay.  Then, when I turned to roll out of bed, bam!  The blaze of pain would return.

I learned to keep my bottle of painkillers next to me when I slept.  That way, when I woke up, I didn’t have to reach very far for a pill.  I would gingerly edge my fingers along the mattress, grab the bottle and open it.

That would be it– the only motion I’d perform.  Reach over, take out a pill, put it in my mouth, swallow.  And then wait until I felt it set in; everything would become dull, and a little less horrible.  I was a little farther inside myself, but at least I was also farther away from the pain.

Tramadol, Tylenol, Advil, and a muscle relaxer.  And Bengay cream.  And heating pad at night.  These were all the things I needed to make it through– if you can call it that.

***

Part of what made it worse is that I was treating my back pain like it was a running injury.  That was the only type of injury I’d had before, and with all of those injuries, the important thing was to rest.

I later learned that with a back issue such as this (it wouldn’t be accurate to call it an injury) it’s actually really important to move, and strengthen the back muscles.  To an extent, you have to keep moving in spite of the pain, because if your muscles get weak, things only get worse.

But I was young, and I didn’t know.  In fact, I was tough; I was an athlete.  I’d never had “injuries” before that hadn’t been caused by a serious amount of force travelling through my body, my feet pounding into the pavement at sub-6-minute mile pace.

I was not at all familiar with this kind of pain– the kind of pain that kept spiraling beyond my grasp, beyond my wildest efforts to control it.  The kind of pain that seemed to be caused by almost nothing.

So, I thought, I needed to rest.  That’s what I’d done for all my previous injuries.  I didn’t want to strain anything, or break anything.  With this amount of pain, rest.

***

In the midst of this, I was due to start at the new school I had transferred to; a small liberal arts college in Western Massachusetts.  I contemplated not going, but ultimately I decided to take the plunge. I didn’t want to miss out on yet another experience.

Luckily, I could physically make it to class– the campus was walkable, and my legs had healed completely from the surgery.

But a lot of the time, I couldn’t concentrate.  I remember being in class knowing I was feeling the exact moment when my last dose of tramadol wore off, counting down the minutes until I could go back to my dorm room and take another.

And then, once I was safely back in my room, I’d briefly fall asleep.  Not from the tramadol (my body got used to it after a while) but from the sheer exhaustion of trying to stay awake through something so excruciating.  It was as though my conscious mind needed a break from experiencing this much pain, and sleep was the only way out.  So I’d fall asleep, and leave reality behind for a little while.

***

The way out, as I learned in physical therapy, was to get out of bed and keep moving as much as possible.  I started going for walks– long walks, which I might have once thought impossible before my leg surgery.  This, as my PT explained, helped to increase blood flow, flushing out some of the pain-producing chemicals in muscles, and also “acting like a giant heating pack from the inside,” helping the muscle to relax.

Additionally, I started doing specific exercises to strengthen my back muscles.

And you know what else?  I took my painkillers.

***

Contrary to what you might expect, my doctor at school totally understood what I was going through and encouraged me to actually take the full amount of tramadol she had prescribed (up to 6 pills a day), if it would help me move more.

From her, I had my first real experience with understanding pain science.  She explained that, with “glass back syndrome,” the pain sort of became its own cycle.  As the muscles would spasm and create pain, this would actually cause all of the other nearby muscles to tighten up as well, to protect the area.

The painkillers, it turned out, were actually helpful in reducing those pain signals telling the muscles to spasm.  When I took them, I was able to go for walks, and do my exercises, and get stronger.

(This experience is one reason why I will always believe in the power of prescription pain medication to help chronic pain patients.  Without it, I truly believe my recovery would have taken much longer).

***

Eventually, my back got stronger, and the all-encompassing muscle spasms finally stopped.  I found I no longer needed the tramadol, and I stopped that too.

However, though my “glass back syndrome” eventually subsided, the pain would never fully go away.

To be continued in Part 3!

Central Sensitization, Creative Writing, eating disorders, My Story

How I developed central sensitization: Part 1

sunlight in winter

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.

Creative Writing, Inspiration, mindfulness, My Story

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 PT, 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.

My Story, Women's Health

An Update on Life with One Ovary

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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)