The story of my wrist, and the pot of boiling water (Finally, my own pain science metaphor!).

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Using metaphors to explain how pain works

One of the original reasons I started this blog was to get the word out about the various pain scientists and educators whose work has touched my life (including, but not limited to, Neil Pearson and Lorimer Moseley).

From them, I’ve learned that pain isn’t here to make us suffer (although it seems like it sometimes).  Ultimately, it’s here to keep us safe.

It’s a protective mechanism, and sometimes it can try a little too hard to keep us safe.  A sensitive nervous system is like an overactive alarm system, or an overprotective friend.

It can “zoom in” or “turn up the volume” on pain signals it thinks you need to pay more attention to.   This is what I call the “up” dial.

Your body can also turn down the volume on pain.

There may come a time when your nervous system decides it’s more important to “turn down the volume” on pain– or even block out pain signals completely.

Normally, this “down dial” isn’t something we are able to access consciously.  It’s something our body can do automatically, in times of great danger, if those pain signals are distracting us from getting out of a dangerous situation.

Neil Pearson, for example, tells the story of a patient he once treated who had been hit by a drunk driver on the way to work.  He woke up upside down in his burning car, and realized he had lost an arm in the accident.

The man managed to extricate himself from the car, collect his missing arm, and walk back up to the side of the highway all without feeling any pain.  This is because, in that moment, his body knew that feeling pain would take away from his chances of survival– the most important thing was his getting to safety.  Once he was safely in an ambulance in his way to the hospital, then the pain set in.

Your body has the ability to adjust the level of pain you perceive.

This is a survival mechanism that normally kicks in under emergency circumstances.

However, it is something we can also learn to do consciously with practice, using various techniques to tell our body to “turn down the volume” on pain.  That is the focus of pain neurophysiology education, the approach to pain management that changed my life.

My own metaphor

The really good news about this approach is that you don’t actually have to be a neuroscientist, or even have a huge scientific background, to learn how to do it.

Somehow, once you start to switch over from viewing pain as an enemy to a friend or a guardian, it can start to make an immediate difference in how you perceive it.

That’s why I’ve been so determined to spread the word about some of the metaphors that have helped me.  However, I’ve felt a bit limited in doing this, since I’m also interested in not plagiarizing other’s work.

So today at long last, I got my own metaphor. 

It’s not particularly wild or dramatic.  In fact, it’s pretty subtle (and also makes me not sound terribly coordinated).  However, I think it does a great job of explaining in a down-to-earth way exactly how the nervous system can choose to turn pain signals out, if it benefits your survival to do so.

It’s a small thing, really.  (And actually, it illustrates to you how absent-minded I can be at times, but that’s another matter!).

I was cooking dinner, boiling some ravioli.  They looked about done, and I was starving.  So, without really thinking, I lifted the pot off of the burner with one hand, and started taking it over to the sink to drain.

Halfway to the sink, I realized the pot was much heavier than I’d anticipated.  I realized I hadn’t really been paying attention, and it had been a mistake to pick it up.   Now I felt like my wrist was about to give out, and I was already halfway to the sink.

I quickly thought through my options.  I wanted to put it down instantly, but there wasn’t a clear space on the counter.  I wanted to put another hand up to steady the pot, but the handle was too small and I would have needed a potholder.

My wrist was really starting to hurt, and for a second I considered just dropping the pot altogether.

But no.  I had a vision of scalding water splashing everywhere, including on me, burning my skin.

And just like that– that very second– all the pain in my wrist disappeared.  Nope, my body said.  We are NOT dropping a pot of boiling water on ourselves today.  

My nervous system made an executive decision, in that instant, to block all the pain out.  Ultimately, the prospect of spilling boiling water all over myself was more of a threat to my survival than the pain in my wrist.

I was able to get the pot of water all the way over to the sink without incident.  About 30 seconds after I put it down, that’s when the pain came back.

Like Neil Pearson’s patient making it safely into an ambulance, my nervous system had blocked the pain out just long enough for me to safely put the pot of water down.  Once that was over, the pain came back, to remind me that indeed, I had put my wrist through something strenuous.

It’s been a few hours and my wrist is just a little bit sore.  I know it will go away– it wasn’t a permanent injury or anything.  I just strained it a little bit by trying to carry something it wasn’t strong enough for.  (This is a good reminder that I need to pay more attention in the kitchen, even if I am spaced out and hungry!).

But I wanted to share this with you because I think it provides a good example of how pain isn’t always a clear-cut indicator of what, exactly, is going on in our body. 

Instead, it represents our body’s “safety monitoring system,” warning us about potential threats to our survival, and making sure we choose the course of action that’s most likely to keep us safe.

Of course, if you have chronic pain day in and day out, it can be hard to see pain as a protective mechanism. 

I said it was a protective mechanism– I never said it always perfectly.

Sometimes in the case of chronic pain, the “up” dial can get stuck on.

That’s why, again, it is so important to know that your pain also has a “down” dial, and that, with practice, you can learn to access it.

I hope you found this post helpful!

For more on the metaphors which can help you understand pain, I recommend you check out my posts:

As well as:

That’s all for now!  

Any questions, leave a comment below or email me at sunlightinwinter12@gmail.com!

What’s in my chronic pain toolkit?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Which has led me to wonder…

What if we told our stories more, not less?

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

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

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

I speak from experience… I practice what I preach.

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

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

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

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

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

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

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

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

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

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

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

 

 

Christopher deCharms: A look inside the brain in real time

I’ve been writing about some heavy stuff recently, so I thought it would be a good time to share something that makes me feel really hopeful:

Christopher deCharms is a neuroscientist and entrepreneur who, along with other prominent researchers such as Dr. Sean Mackey, is paving the way towards using brain imaging to study and treat chronic pain.

deCharms founded a company, Omneuron, which has developed something called rtfMRI, or “real-time functional MRI.” 

In studies of chronic pain patients, this new technology allows researchers to see exactly which area’s of a patient’s brain are the most active, and how this activity can change from moment to moment, depending on what the patient is instructed to do.

We know that the brains and nervous systems of chronic pain sufferers function differently from people who aren’t in pain– now this technology allows us to see how.

deCharms explains,

There have (historically) been three ways to try to impact the brain: the therapist’s couch, pills and the knife. This is a fourth alternative that you are soon going to have.

We all know that as we form thoughts, they form deep channels in our minds and in our brains. Chronic pain is an example. If you burn yourself, you pull your hand away. But if you’re still in pain in six months’ or six years’ time, it’s because these circuits are producing pain that’s no longer helping you.

If we can look at the activation in the brain that’s producing the pain, we can form 3D models and watch in real time the brain process information, and then we can select the areas that produce the pain.

Just as there are parts of the brain which can produce the experience of pain, there are also parts of the brain which can “turn down the volume” on pain, so to speak.

There are a few mechanisms by which the brain can inhibit pain signals.  One powerful way is through the production of our own endogenous opiates– chemicals which our own brain produces to block pain.  (These chemicals are what opiate medications such as Percoset and Oxycontin are trying to mimic).

Omneuron is researching ways which patients can learn to “turn up the volume” on the parts of their brain which inhibit the sending of pain signals.

As deCharms explains in this additional interview:

There is a built-in dial in the brain, that, when you turn it up… pain goes away.  So we hope that when we can teach people to control these systems, to control this dial in the brain, they can make the brain go down.

He explains that many of his patients report feeling empowered simply by seeing images of the pain activity in their brains on the screen.  For so long, they had felt as though the people in their lives didn’t believe them about how much pain they were in, and there, on the screen, was proof.

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I really find this topic to be so fascinating, not to mention inspiring.

If you’d like to know more, I actually have a whole section within my “Resources” page on how fMRI is being used to study and treat chronic pain.  (I have links to a bunch more articles, as well as some interesting talks by other prominent researchers).

Hope you’ll check it out!

The things I don’t have easy answers for

My friend C. once wrote that vulnerability does not always have to mean a state of weakness:

In order to function in my everyday life, I have to be vulnerable and explain why my body “doesn’t show up” when it needs to and that sometimes exposes me to feelings of powerlessness. At the same time, it exposes me to my own courage, resiliency, and even to these words.

Think about that. Isn’t that something radical and beautiful? Being vulnerable is a state that I am placed into because of my body but it is also a position of boldness.  It is the same condition that allows you to love, explore and seek out meaning in your life, and relate to each other’s humanity. That’s not weakness; rather, that’s power.

Can being forced to rely on others actually be a good thing– something that forces you to connect?

This question struck a chord within me, after a lot of the things that have happened in the past few years.

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You may have noticed that I say much more about science than personal stuff on this blog.  Partly, of course, that’s because it’s public, and to say too much about my life would be terrifying.

But at the same time– despite how complicated it is, and how many classes I had to take to get to this point– the science is actually much simpler to me, compared to trying to manage relationships when you have chronic pain.

During the five years that I struggled with sacroiliac joint dysfunction, I lost friends.

Looking back now, I realize that it probably wasn’t just because of my physical issues.  It probably would have happened anyway–my health problems were just the catalyst.

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I was 25 when I first developed these problems.  I have written elsewhere about how terrified I was; how confused.  I had just gotten answers for my chronic pain problem, and now, all of a sudden, I had this pinching sensation in my low back and I could barely walk.

For a while, everything went out the window.  I couldn’t climb stairs; it hurt to climb into the shower.  At times, my physical appearance slipped.

I went to meet friends for coffee in sweatpants.  On Saturdays, I had to wait until the very end of the day to use my gym pool, because it was filled with swim lessons the whole rest of the day.  This meant I’d show up at social events late, sometimes with my hair wet.

I had to plan ahead. Sometimes it hurt so much to drive that I preferred to take public transportation.  I wasn’t always the easiest person to coordinate with; I admit it.

Some of my friends were happy to stand by me, and our relationships were unchanged.  Yet, with others, it seemed I could no longer keep up, and I stopped getting invited to things.

The most painful part of this that it wasn’t just my casual friendships that slipped away.

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Instead, some of my most cherished friendships turned into a scenario where instead of a friend, I started to feel like an unpaid therapist.  I’d be available to listen for hours, when the other person needed someone to talk to about her problems on a Sunday afternoon, or a weekday evening.   On Friday or Saturday night, I wouldn’t actually be invited out.  But sooner or later, I knew that next phone call for help would be coming.

To an extent, I think it comes down to the amount of strength people have to offer.  As the saying goes, “People cannot give you something they don’t have themselves.”

I noticed it’s the people who were the most unhappy in their own lives, the ones who felt they were under the most pressure to conform and live up to superficial standards, that were the most likely to let our friendships be affected.

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found via The Mind Unleashed

Over time I came to realize it wasn’t a reflection on me.  Yes, maybe there were a few things I could have done differently to be easier to make plans with, but my real friends took it in stride.  They stood by me, and were still willing to be seen in public with me, even if (God forbid) I was wearing flats and I wasn’t wearing makeup.

Now I understand that these things just happen.  If a friendship couldn’t withstand my having physical limitations, it wasn’t meant to be.  What it really means is that person, at that moment in time, did not feel secure with her own life, and did not feel she was in a position to have anything to give.

As my friends and I hit our late 20’s, there was just something about the age of 30 approaching.  We all felt the pressure looming over us: the end of our free, hippiesh 20’s.  The growing pressure to find a career we were going to stick to for the rest of our lives.  Find a husband.  Settle down.  Have kids.

As one friend put it, it was almost as though 28 and 29 were the age we realized for the first time that, in fact, someday we were going to die.  We’d always known it in the abstract, but now we were beginning to understand that we weren’t special; we were just like everyone else.  (Looking back now, I know this sounds a little absurd.  But somehow it was a truth that hit us all, at the same time).

In the face of this growing pressure, people changed.  I think it’s worse for women.  In fact, I know it’s worse for women.

So I don’t take it as a rejection; I take it as a sign that my friends weren’t okay with where their own lives were at.  When you’re able to be there for someone else, and put your own needs aside, it means you’re strong.  And I am grateful that, despite everything– despite my ever having dared to create the spectacle of showing up in public without makeup– I am still the kind of person who has the strength and security to be there for other people.

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Ultimately, I am the one who chose to walk away from these relationships, although it’s not like I really felt I had much of a choice.

It just got to the point where the dissolution of the friendship seemed inevitable.  I saw the writing on the wall and decided to focus my efforts on the people who were there for me; the people who had something to give.

With my extra free time, I reached out to people I’d been meaning to get to know better, but had always been too busy.

I discovered that acquaintances I’d known for years were actually amazing people, and some of them became my new best friends.

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Honestly, I was sad for a long time, and it didn’t all come together overnight.

It took a while for my new friendships to solidify.  I had to wade through a period of loneliness first; it took time to reach out to new people and build new relationships.

And sometimes I wanted to run back.  But I didn’t.  There was no going back.

Over time things came together.  I can honestly say now that for everything and everyone that I’ve lost, I ultimately found something new, and something that fit me better for this stage of my life.

But It took time.

I still have the positive memories of my old friendships.  I’ll always be grateful.

Now, I understand that life isn’t perfect, and people will usually hurt you in an attempt to heal themselves.  It’s because they feel like something is missing, and they don’t know what to do to find that missing piece.  It isn’t personal.

But it is okay.

I will always have the good memories.  I can still love the people I loved, even if I had to walk away in order to make room for something new.

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