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

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.

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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.

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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.

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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.

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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.

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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.

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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.

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

Shedding light on central sensitization

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).

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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!

Creative Writing, My Story, Treatment Approaches

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.

Central Sensitization, Chronic Pain, Favorites, Pain Neurophysiology Education, Pain Science, physical therapy, Treatment Approaches

The core message of pain neurophysiology education

In the traditional model of physical therapy, the physical therapist prescribes stretches and exercises for the patient in order to improve function in one part of his or her body.

For example, if you have back pain, your PT will probably give you strengthening exercises to build up the muscles in your back and your core.  If you have a knee injury, she’ll  probably give you exercises to strengthen the muscles around the knee.  This is why when most of us picture physical therapy, we imagine a patient grunting and sweating in a gym while the therapist looks on.

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Pain neurophysiology education, however, draws from a different treatment model.  This model is not based on the idea that the patient’s pain is coming an injury in one specific part of the body.  Instead, it targets the sensitized nervous system directly as a source of pain.

The best way I can try to describe this is with graphs.  The first graph below shows the way most people imagine pain to work.  It also shows what most physical therapists are imagining when they prescribe stretches and exercises to improve a patient’s function:

acute pain graph

You can see how, as the intensity of the injury diminishes (represented by the black line) the intensity of the pain diminishes as well (represented by the red line).  This matches our experience of pain in most minor situations: getting a tooth drilled, pulling out a splinter.  When the stimulus goes away, the pain goes away.

However, in situations involving chronic pain (generally defined as a painful experience that lasts for at least two to three months) the pain response works differently.  Prolonged exposure to a painful stimulus actually produces changes in how a person’s nervous system works.  It’s as if it sets off a feedback loop in which pain signals continue to be produced independently of the level of injury.  For this reason, pain persists even after the initial injury has healed:

chronic pain graph 2

This second graph is an accurate representation of the state I was in when I was first introduced to pain neurophysiology education by my physical therapist Tim.  I had a very high level of pain, but it was not correlated with a high level of injury in my body.  This is why I hadn’t seen much improvement with any of my past physical therapists– my pain was coming from my nervous system, not from a specific injury in my body.

“If pain is the patient’s primary symptom, then pain relief should be the primary goal of treatment.”

I once read something along those lines in a blog comment section, and it really stuck with me.

Most physical therapy programs are designed to improve function of a certain part of the body.  But when your pain isn’t coming from a problem with a certain part of your body, you can stretch and strengthen until the cows come home.  It still won’t change your level of pain.

This is why none of the physical therapists I had seen before had been able to help me.  They were all stuck on the idea that I needed to strengthen my back; strengthen my abs; strengthen everything.  Of course, in some ways they were right.  I wasn’t in the greatest shape.

But what Tim was able to identify is that there was a common denominator behind all of the pain I was experiencing in different parts of my body.  Rather than looking at each one as unrelated, he recognized them as the symptoms of an overactive nervous system, or, as he taught me, body alarm system.

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The goal of PNE is basically to help the patient’s body “remember” what an accurate pain response is supposed to be.  There are a few ways to accomplish this, and I will be discussing them in upcoming posts.  But the general goal of these various techniques is to help the patient’s nervous system get back in touch with with the reality of what’s happening in his or her body.

This graph shows the general goal of treatment:

input to nervous systemThe blue arrows represent the input you want to give to your nervous system.  You’re basically saying to it, “Hey.  Hey you.  You are freaking out for no reason.  This is reality, and it’s over there.”

The role of the physical therapist is basically to help the patient’s nervous system realize it doesn’t need to be on high alert all the time, and to slowly help it calm down.  The idea is that as time goes on, the discrepancy between what the person’s nervous system feels and the actual level of dysfunction in his or her body will slowly shrink.

Now, to be honest, I’m not sure you will ever be able to fully reverse the process of central sensitization.  It’s probably possible, but it hasn’t happened yet for me.  That’s why I didn’t draw the red line going all the way back down to the bottom.  An overactive pain response will always probably be somewhat of a factor for me, but it is a million times better for me now than it used to be.  I’d much rather have the red line close to zero than soaring way up high, totally out of touch with my physical reality.

P.S. I adapted this post from Part 3 of my series on my own patient experience with pain neurophysiology education, entitled “How a physical therapist helped me through my lowest point.”  I’m experimenting with different ways to present information, to find out what works best for people.  Definitely check out that series if you’d like to know more!  I would love to hear any comments or questions you might have.

Photo Credits:

  • Strength training equipment pic: colonnade
  • Balance training equipment pic: kbrookes
Central Sensitization, Chronic Pain, Pain Neurophysiology Education, Pain Science, physical therapy, Treatment Approaches

What is pain neurophysiology education?

In a nutshell, pain neurophysiology education is the type of treatment for chronic pain that changed my life and inspired me to become a physical therapist.

I’ve mentioned it in passing on this blog, but I decided it’s high time I give the topic its own post.

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In my series “How a physical therapist helped me through my lowest point,” you can read the story of how my life had ground to a halt because of chronic pain, until I finally met Tim, a physical therapist who had studied with Neil Pearson.

Tim treated my pain in an entirely different manner than all the physical therapists and doctors I’d seen previously.

He explained to me that after all my body had been through– running 45 miles a week, only to develop compartment syndrome and barely be able to stand, to live like that for two years, and then to undergo surgery– my nervous system had gotten confused.

All the pain doctors hadn’t been able to explain– it wasn’t because I was crazy.

In fact, the reason I was feeling all this pain was because my body was trying to protect me.

My nervous system had decided the world was a dangerous place.  It was tired of me taking chances– it didn’t want to have to deal with another injury.  So it was making everything hurt.  It was making me feel as though I were made of glass.

But I wasn’t made of glass, Tim assured me.  My body was strong; it was capable.  And this attempt on the part of my nervous system to protect me had over-served its purpose.

Tim explained that the surgery I’d had for compartment syndrome had been successful, and despite how much my legs might hurt at times, I wasn’t going to be able to bring it back just by walking down the street.

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The pain neurophysiology approach worked when nothing else had, because it gave me a real explanation for the pain that actually made sense.

Before that, all the physical therapists I’d seen (and I’d seen a lot) had taken one of two approaches:

A) You have some underlying soft tissue problem or scar tissue or whatnot that we have to fix with a special treatment, or

B) I can’t really find anything wrong with you, so the pain must be in your head and you should probably see a psychologist.

Neither of these approaches ever made a difference for me.  The “special treatments” for the hidden, subtle issues in approach A never fixed anything or reduced my pain (except temporarily, because I felt like I was doing something).  And approach B never fixed anything, because ultimately these problems were not reflective of my overall mental health.

Instead, I learned, my pain was the result of a specific phenomenon that occurs within the nervous system: central sensitization.  Basically, the underlying principle here is that the more practice the nervous system gets at sending signals, the better it will get at sending those signals.  And that is true of pain signals, along with everything else.

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Tim didn’t really use the words “pain neurophysiology education” while I was seeing him for treatment.  Instead, I first found this phrase while I was looking through Neil Pearson‘s website, as Tim had urged me to do.

From there, I discovered the names of other physical therapists and researchers who had contributed to developing pain neurophysiology education, or PNE as I’ll be referring to it in the future.

Names such as David Butler of the Neuro Orthopedic Institute, and Lorimer Moseley of the research group Body in Mind.

From there I have discovered so many interesting resources, and articles, and interesting people doing work on the subject.

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For 2017, I’m trying to get back to my roots on this blog.  I started blogging to educate people on the science of chronic pain, and I really enjoy doing that.  So I’m planning to start channeling more energy towards that again.

So I’m going to start fleshing out this section of the blog again.  I’ll be providing a lot more explanations, linking to great resources, and also quoting excerpts from articles that I think explain things really well.

And I’ll be telling my own story, when it comes to my struggle to understand my body, and learning to deal with central sensitization.

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For now, I want to leave you with two posts I wrote on some of the main concepts I learned through my experience with PNE:

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

These posts tie in a couple of anecdotes from Neil Pearson and Lorimer Moseley that I found particularly helpful.  (Let me say, once again, that I am so, so grateful for their work!).

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I hope you find this post, and the related articles I linked to, to be helpful!  I’m really excited about the things I plan to write about in the future, and I hope you stay tuned!

Treatment Approaches

Breaking up muscle knots, without completely breaking your budget

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Sometimes, there’s nothing like a good massage.  Exercise and stretching are incredibly important, but sometimes you really just need someone to dismantle the knots that have taken over your muscles, and give your body a “reset.”

Unfortunately, if you’re dealing with a chronic condition, the cost of things like massage, acupuncture, and other bodywork can add up quickly.   How you can you pay for these things without completely ruining your budget?

Here are some of the best strategies I’ve learned over the years for using your money as effectively as possible to get the help you need.

*Before booking anywhere, look the place up on Yelp to see if other people had a good experience there.  This is especially true if you’re following my next tip:

*Check websites like Groupon and Living Social.  Many massage therapists post deals on these sites to try to bring in new clients.  I’ve saved a lot of money and met some interesting, helpful people this way.   I’ve also seen people start to post deals for other types of therapies, such as acupuncture and chiropractic.

*Check the massage therapist’s or business’s own website.  A lot of places offer a discount to first-time customers, or a monthly special.  (Many also offer a discount for people who book multiple appointments, but leave that until after you’ve had at least one massage there).

*Check to see if your insurance company will help you pay for massage.   Some companies, at least in the US, will pay for about 15% of the cost of your massage, if you go to someone that’s in-network.

*Ask if there is a sliding scale.  Sometimes people in the helping professions offer a “sliding scale” to those with financial difficulty.  It isn’t something they always advertise, however, since they (quite understandably) don’t want to be taken advantage of.

This is sometimes an awkward conversation, but if it’s the difference between you getting help or not, it can be worth asking.

*Try to find a massage school near you that runs a student clinic.

Massage students have to perform a certain number of hours of massage before they can be licensed.  Most massage schools operate a student clinic where members of the public can come and get a discounted massage performed by a student.

This probably won’t be a spa-like experience.  You might end up sharing a room that has multiple massage tables in it with other people.   But it is a way to get a low-priced massage, without having to book too far in advance.  (Thanks to Jezzybel for this suggestion!).

*See if you can find a physical therapist who specializes in massage. 

Unfortunately, not all physical therapists consider massage to be an important part of treatment.   Some PT’s haven’t had very much training in it.  Others are discouraged from performing massage on patients by the companies they work for because insurance companies do not reimburse as much for massage.  But once in a while, you’ll find a PT who considers massage to be an important part of treatment, and whose place of employment allows him or her to perform it.

I am currently seeing a physical therapist who specializes in massage, and it’s incredibly helpful, convenient, and cost-effective, as my insurance company pays for most of it.  But it took me forever to find her.

Unfortunately, there is no obvious way to find a physical therapist like this.  I would suggest looking for someone who mentions manual therapy or soft tissue release among their techniques.

*Check out Community-Oriented Businesses

I’ve come across a few really awesome places over the years which follow a slightly different model than the traditional spa or health center.

Many of them have had the word “community” in their name, and they place an emphasis on being affordable and accessible to everyone.   These types of places generally offer a sliding scale upfront—everyone pays what they can.

I make it a policy not to post the names of businesses I currently frequent.  (Maybe I’m being paranoid, but the internet freaks me out).

I am, however, comfortable posting the names of businesses in places I no longer live, so here is a place I went for acupuncture when I was in college.  You can check this out as an example of a community-oriented business, and see how it’s a little bit different from other places.

http://amherstcommunityacupuncture.com/welcome.html

Many businesses that follow the community model offer other services, such as massage, counseling, and nutrition therapy.

*Self-Help Techniques for Muscles

Of course, there are plenty of things you can do for yourself to help ease muscle pain and prolong the length of time you are comfortable between appointments (for example: ice packs, heating pads, and self massage with a tennis ball and other tools).  However, there is so much to say about this that it will have to wait for another post!

Thank you to Foundry Park Inn for the use of the above photo!

Healthcare, Interesting Articles, psychology, Treatment Approaches

“Science-based” vs. “evidenced-based” medicine

Over the years, I’ve seen the words “evidence-based” used to justify a lot of concepts I find dubious.  (Trust me– I saw some pretty ridiculous things during the time I worked in a mental health group home).

This article from Paul Ingraham at PainScience.com in favor of moving from evidence-based to science-based medicine was music to my ears.  I realized that, although I hadn’t consciously thought of it in those terms, advocating for that shift has been one of my motivations for working on this blog.

A lot of the treatments for fibromyalgia sufferers might be “evidenced-based,” but that doesn’t mean they shed any real light onto its causes.  For example, an “evidenced-based” course of treatment for someone with chronic pain or fibromyalgia might be cognitive-behavioral therapy.  It’s true that multiple studies have shown CBT to be helpful for patients with these conditions.

However, I don’t believe it’s reasonable to infer that because CBT has been shown to benefit fibromyalgia patients, those patients must have had an underlying psychological problem in the first place which contributed to their fibromyalgia.

To me, that’s confounding variables.

It makes perfect sense that someone with chronic health problems is going to appreciate having a sympathetic person sit with them, listen to them, and teach them new coping strategies.  However, this does not mean that fibromyalgia or related conditions are caused by depression or anxiety.  It simply means that therapy helps patients feel better.

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What I try to do on this blog is to present the scientific evidence in favor of what I’m arguing.  That’s why I am always linking to academic articles.  Even though I know people don’t always have time to read them, it’s important to me that the citation is there.

It blows my mind that there are still practicing medical professionals out there who are unaware of all the research that has been done on the complexities of the nervous system, and how people experience pain.  In my opinion, the research that has been done on the process of central sensitization is a lot more convincing than the research that has been done on the overlap between mental health conditions such as depression and anxiety and fibromyalgia.

For one thing, it makes sense that you’re going to find a higher rate of depression and anxiety among the chronically ill.  I don’t know why anyone is surprised by this. To me, it makes perfect sense that those suffering in chronic pain and discomfort would experience an impact on their mental health.  It’s a chicken and the egg problem, and I find those studies relatively meaningless.

For another, the people who write these studies apparently don’t know anything about the process of central sensitization.  They appear to be completely unaware of the ways our nervous systems can physically change in response to chronic pain, in a way that is beyond our control.  Physical abnormalities have been found not only within the brain but within the spinal cord of chronic pain sufferers.

To say that depression and anxiety are responsible for chronic pain is to focus on only the tip of the iceberg.  If the people who published these studies would at least acknowledge the rest of the iceberg, I would be able to take them more seriously.

But it seems that academic knowledge is too compartmentalized.  Some people go into psychology and study people’s moods and thoughts.  Some people go into neurology and study the nervous system.  Even the people within neurology end up specializing.

This is why I am inspired to see people beginning to criticize the concept of “evidenced-based.”  I’m tired of people throwing those words around as though it means what they are doing is automatically great.  There is a difference between evidenced-based and science-based.   When you can see physical abnormalities in the brain of a chronic pain sufferer under a fMRI, that is science.   Assuming that people with fibromyalgia must have a problem with depression because psychotherapy makes them feel temporarily better is not. 

Anyway, that was a bit of a rant (but I’ve been told my rant-y posts are some of my best!).

Do you agree with me? Disagree? Let me know your thoughts!

Digestive Issues, Treatment Approaches, Women's Health

Beware the Red Herring

One of the reasons I sometimes take a critical tone towards alternative medicine on my blog is not always that I think these approaches have no merit.  But I do think that, too often, people are drawn to and waste their time treatments that are simply “fads.”

When I look back on everything that led up to my losing an ovary, I can’t help but feel my digestive problems are to blame.  I wasn’t sure I wanted to talk about my digestive issues on this blog, but what the heck.  I have issues with IBS and chronic constipation, made worse by the fact that I have a pelvic floor disorder.

I am so used to feeling discomfort in my abdomen that I didn’t rush to the hospital the moment things began to hurt.  In retrospect, that was critical time in which my ovary was being deprived of blood supply, and although the doctors and nurses I talked to didn’t want to come right out and say it, there is a chance I could have kept my ovary had I gone to the hospital sooner.

When I look back, I can see that some of the symptoms I associated with my twisted ovary were actually building for months.  I had this weird feeling in my right side, a feeling that something was where it shouldn’t be, for almost a year.

It’s so infuriating to realize this, because I talked to two gastroenterologists about the feeling that something new was wrong on my right side, that somehow things were getting worse.  I told my most recent doctor– who actually published a book on digestive issues in women– that I felt as though the right side of my abdomen always seemed to be a bit swollen (for lack of a better word). That my right side was always aching a little bit, that it was simply bigger than my left side.

This doctor basically told me not to try too hard to diagnose myself; that I shouldn’t go by how things felt from the outside.  I tried to explain that I wasn’t, but our appointment time was over and she had mentally checked out.

I am so frustrated now, because I wish she could have pointed just out that ovarian cysts can have many of the same symptoms of IBS.  Perhaps she could have said something like “Gee, I have no idea why that area is bothering you, perhaps you should try seeing someone in a different specialty.”

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I also wish I’d tried harder to get an answer.  It’s funny because, a few days before the pain really started up in earnest, I knew things were getting worse.  I didn’t have the horrible pain in my right side yet, but the feeling that something was there, that something was stuck, was really getting on my nerves more than usual.  I remember saying to my mom “I have to deal with this problem.  I can’t keep taking no for an answer.  I have to find a new gastroenterologist.”

Almost a year had gone by since I had seen a new doctor.  The last time I saw my doctor, which was almost a year ago now, she had offered to put me on Amitiza, a medication for chronic constipation.  I was reluctant to start a medication without exhausting every other possible option, so we decided that I would try going gluten-free first to see if it helped.

My doctor had said that sometimes it can take a long time for the gluten free diet to help.  She also said that it won’t necessarily work to just reduce gluten; you might have to eliminate it completely to really see an improvement.  So I spent the past year waiting to see if this would help.  At some point over the course of that year, my right ovary began to twist, and I did not aggressively pursue answers for the new pain I was feeling.

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Now, I am sure that a gluten-free diet has helped many people.  But at the same time, gluten-free diets for non-celiac sufferers is not something that has actually been proven to have any scientific merit (as far as I’m aware).

I think it was a mistake for me to have endured so much discomfort, for so long, waiting for something with so little evidence to help me.

When I look back over the years, I can actually see how sometimes, being stoic and just enduring the pain and discomfort has not served me well.  I’m sure certain family members of mine will get a good laugh out of this statement, but I wish I had complained more, not less.

Being stoic is not always good.  And neither is being too open to new ideas.  I had a very real, very diagnosable problem in my abdomen.  But I was content with no answers, for too long, because I was waiting to see if something that is basically a fad was going to help me.

Of course, I don’t mean this in any way to be a criticism of those who are on gluten-free diets.  If it helps you, that’s great.  I might even try it again in the future if my digestive symptoms don’t improve.

But it’s about proportionality.  When I look back, it just doesn’t seem logical; the idea that I could fix extreme discomfort by no longer eating something I had eaten comfortably for most of my life.  I can see why my doctor would have recommended a gluten-free diet for a more subtle condition.  A subtle treatment for a subtle condition.

But there was no proportionality between the persistent, nagging feeling that something was stuck in my abdomen, which bothered me day in and day out, that kept me awake when I tried to fall asleep at night… and gluten.  If gluten-free diets could clear up this kind of discomfort, I’m pretty sure they would be in medical textbooks by now.

So, these were my mistakes.  The first: a lack of proportionality.

The second: being too stoic.  I waited far too long for something with very little scientific credibility to help me, instead of insisting that a doctor understand exactly how miserable I am.

Let’s not be strong all the time, people.  Sometimes, it’s really important to just let yourself complain.