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.

***

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 best TED talk ever: Elliot Krane on the Mystery of Chronic pain

Tonight I’m throwing it back to this amazing 2011 lecture on chronic pain given by Dr. Elliot Krane of Stanford University.

I found his talk around the time I was first starting this blog, back in 2012, and it really inspired me to try to tell my own story with complex pain problems.

Dr. Krane is a pediatrician and an anesthesiologist.  He specializes in treating children with chronic pain disorders at the Lucile Packard Children’s Hospital at Stanford University.

In this talk, Dr. Krane outlines the case of a young girl who developed CRPS following a wrist sprain, and was successfully treated at his hospital.

He has some really great quotes and soundbites about chronic pain– things I want to remember, and things I think will be useful in trying to explain the multi-layered nature of pain to people who don’t quite get it (yet).

So here, I’m just going to take a few notes so I (and you, if you’re interested) can come back and remember some key points really quickly:

***

Most of the time, we think of pain as a symptom of a disease– the result of an infection or a tumor, an inflammation or an operation.  But about 10% of the time, after a patient recovers from one of those events, the pain persists for months or even years.  In those cases, pain can become its own disease.

Chronic pain is “a positive feedback loop…. It’s almost as if somebody came into your home and rewired yours walls so that the next time you turned on the light switch, the toilet flushed three doors down, or your dishwasher went on, or your computer monitor turned off.  It sounds crazy, but that’s what happens with chronic pain.”

Glial cells (a particular type of cell found in the nervous system) were once thought to be unimportant.  When I learned about them in my PT prerequisite classes, we thought of them as the supportive “glue” that provides a safe environment for neurons, the more interesting cells that were actually responsible for sending messages.

But, Dr. Krane explains, it turns out that glial cells can play a vital role in the “modulation, amplification and, in the case of pain, the distortion of sensory experiences.”  Once glial cells are triggered by chronic pain, they become overactive and help initiate that the positive feedback loop he mentioned.

Some other quotes:

“The nervous system has plasticity.  It changes, and it morphs in response to stimuli.”

On treatment:

“We treat these patients in a rather crude fashion at this point in time. ”

Dr. Krane describes the treatment protocol for CRPS patients at his center:

  • symptom modifying drugs (painkillers) “which are frankly, not very effective for this type of pain”
  • “We take nerves that are noisy and active that should be quiet, and we put them to sleep with local anesthetics.”
  • “Most importantly… we use a rigorous and often uncomfortable process of physical therapy and occupational therapy to retrain the nervous system to respond normally to the activities and sensory experiences that are part of everyday life.

The future is actually even brighter:

“…the future holds the promise that new drugs will be developed that are not symptom-modifying drugs that simply mask the problem, as we have now, but that will be disease-modifying drugs, that will actually go right to the root of the problem and attack those glial cells….that spill over and cause this central nervous system wind-up…”

***

It’s really interesting for me to look back on this talk, now, and see how my perspective has changed since I first watched it in 2011.  Back then, the point about glial cells largely went over my head (probably because I wasn’t invested at all in knowing what they were).

Now that I’ve taken anatomy & physiology as well as an undergraduate neuroscience course, I can actually see how groundbreaking this really is, to identify glial cells as a potential source of the problem.

It’s as though you’re looking at a telephone pole, and you realize that the wooden pole itself was sending signals, instead of just being there to hold up the electrical wires.  (If that metaphor makes sense).

Anyway, I really hope Dr. Krane is right, that we can begin to develop drugs that will target this mechanism for chronic pain.

Hope you enjoyed this talk!

Out with the old: Saying goodbye to 90’s nutrition advice

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In the spirit of New Year’s resolutions and goals, I thought I’d share this really great article I found recently on nutrition “myths.”  

Fitness Magazine interviewed registered dietitians on how their perspectives on healthy eating have changed over time.  These RD’s talk about some of the conventional wisdom regarding nutrition coming out of recent decades, how it influenced them, and how a lot of it turned out to be wrong.

***

As a teenager struggling with body image issues in the late 90’s and early 2000’s, I encountered much of these same nutrition trends myself from magazines and books, as well as from the nutritionist I saw for help with my eating disorder.

I remember– I was terrified of fat.  When I went out to eat, I insisted that I found mayonnaise and salad dressing “gross,” because I had read that cutting those things out was the best way to cut calories.

Each day, I only ate a certain number of calories at set times, and carefully adjusting the amount depending on the number of calories I had burned through exercise.  My treat at the end of the day would be some kind of “low-fat” dessert or “snack pack” of cookies.  Most of the food I ate was low fat– Healthy Choice ham for my sandwich at lunch, with low fat cheese.  Lean Cuisines for dinner.

It is so strange, now, to realize that so many of the “rules” I based my life around were, in fact, actually all wrong.

One of the quotes I related to the most in the article came from Lauren Harris-Pincus, M.S., R.D.N., owner of Nutrition Starring You.  She says:

“When I became a dietitian in the mid 1990s, we were in the middle of the fat-free craze. Bagels, fat-free frozen yogurt, and Snackwell cookies were all the rage. Our hospital diet materials recommended limiting nuts because of their fat content and limiting shellfish because of their cholesterol. Now, we know much more about the health benefits of fats derived from nuts and seeds, and we’ve also learned that high-sugar, fat-free foods are not nutritious choices. Unfortunately, people have long memories and to this day, so many of my patients are afraid to eat shrimp if they have elevated cholesterol. It’s exciting to work in a field with ever-evolving research.”

Yes– it absolutely was a fat-free craze.  Fat-free dressing, fat-free cheese.  Sometimes I’d even come across bread that was labeled fat free.  I always thought I was doing something great for myself when I reached for that label, not understanding that my body actually needed fat in order to function.  

I also really related to this quote from Emily Cope, M.S., R.D.N., Owner & Consulting Dietitian at Emily Kyle Nutrition:

“When I was in college, I remember being obsessed with those ‘100-calorie packs’ of cookies and crackers. I thought they were a great option—less than 100 calories for all of those tiny wafers!! Little did I know those calories were being replaced with chemicals and unnatural ingredients. These days, now that I am older and wiser, I am less concerned with calories and more concerned with the quality of my food—whole fruit and nuts are my current go-to snacks!”

Yes.  Unfortunately, that was so me as well.  I felt comfortable with pre-packaged, processed foods because they were marketed for weight-loss, and it was easy to know how many calories were in them.

***

These days, I have come so far in terms of my outlook to food that sometimes I almost forget that I ever had a problem.  (After all, I’ve had to deal with so much else with my body over the intervening years!).

I will talk more about how I overcame my eating and body image issues in future posts.  But for now, let me say that these days I think I live and eat pretty holistically.  I don’t get caught up on the idea of depriving myself of something if I really want it; I don’t count calories.  

And the funny thing is, now that I allow myself to eat whatever I want, I find that most of the time, I generally tend to crave pretty healthy choices.  Now that I’m actually well-nourished, I find myself more in touch with how my body responds to different foods, and I tend to gravitate towards the foods that make me feel best.

I’m sharing this with you for a few reasons:  

A) There’s some really good advice contained in this article, and

B) It serves as a reminder to me– and maybe to you– that things can get better.  Even if you have a problem that goes on for years; if you feel trapped and you truly seem stuck, things can change when you don’t expect it.

I truly hope this post was helpful to you.  Happy New Year!

The end of my SI joint problems is officially in sight.

Update, Jan. 2018: Hi everyone– I’ve learned a ton since I wrote this post.  Be sure to check out my other site, My Sacroiliac Joint Saga

And now, the original post:

I’ve held off on writing this post until I was absolutely sure, but the time has come for me to make my official pronouncement.

In my post at the end of this past June, I explained how my SI joints were unexpectedly doing better following my 3 weeks in California. At first, I had thought it was something different about my routine, or being distracted by being around friends. However, once I got home and attempted to resume my regular chiropractic visits, I found myself feeling less stable. Maybe it wasn’t Boston, it wasn’t the East Coast weather, it wasn’t my routine… it was the chiropractor.

****

Now, let me back up. When I first developed my SI joint problem 5 years ago (God, has it really been that long?) my chiropractor was literally the only medical professional who could even begin to explain what was going on, much less free my leg when one side of my pelvis locked-up.

I saw several medical professionals, including two physiatrists and an orthopedist. I also saw a total of seven different physical therapists. No one could tell me with any clarity what was wrong.

I saw one misguided physical therapist who specialized in “manual therapy,” meaning she actually put her hands on my hips and lower back and tried to use pressure to re-align me. This resulted in absolutely no change.

The ONLY person who seemed to be able to help me at all was my chiropractor. I walked into his office with my pelvis completely locked up, feeling as though someone had tied a belt around my legs– that’s about how well I could move them– on the verge of tears. “Oh,” he said calmly. “It’s your sacroiliac joint.”

And with a few clicks of his “activator” tool, my legs and I were free.

****

I wanted to give you this backstory so that you can see how, at one point in time, I was so grateful for the help of my chiropractor. He truly helped me at a time when no one else was able to; when all anyone else gave me were strange looks and exercises I was unable to do– followed by more strange looks when I tried to explain that it’s not that I didn’t want to do the exercises, it’s not even that pain was stopping meit’s that I literally did not have control over my legs. When my hips were stuck, my legs were stuck.

My chiropractor was able to explain to me the anatomy of the joint, and how this mysterious pain on the sides of my lower back could actually be related to me being unable to move my legs. He made me feel that I wasn’t a freak– he told me that this problem was actually quite common– and on top of that– he could make the problem (temporarily) go away.

It’s also my chiropractor who convinced me to finally work out in a pool. Despite all of my hesitations, and insistence that I really just wanted to work out on land… he repeatedly did his best to convince me that this problem was probably going to be permanent unless I found a way to strengthen my muscles without putting more stress on the joint. The adjustments were only going to be a temporary fix, he explained, until I created more muscle strength to hold the joints in place.

He was right about that, too. I didn’t really start to get better at all until I finally joined a pool. Up until that point, my land exercises just seemed to make things worse. (The pool was turning point #1).

I got even better, still, when I truly began to follow a thorough stretching routine. For a while I didn’t know how to stretch because the simple act of getting down on the floor was enough to throw my SI joints out of whack. Undoing my entire chiropractic adjustment just for the sake of stretching seemed backwards; like undoing the foundation of the building in order to adjust something on the roof.

However, I eventually found this really awesome stretching table on Amazon, and honestly– it changed my life. Finally I was able to lie down and do all of my stretches in a way that didn’t impact my hips. So that was turning point #2.

That was my life for a few years: pool, stretching, chiropractor. My life revolved around this problem, because there didn’t seem to be much of an alternative. Once my hips locked up, all else ground to a halt. As I said before, when my hips were really locked, it was as though my whole body was in chains. It honestly felt as though someone had tied a belt around my upper thighs; it was sometimes really difficult to put one foot in front of another.

But it wasn’t a permanent disability either. It made no sense to just give up, accept that I couldn’t walk, and sit in a wheelchair. Because I could walk, when my hips were aligned. During those first few moments after I left the chiropractor, I felt totally perfect and free. It’s just that things never stayed that way.

So I did my best, doggedly. I was afraid to drive– afraid that if something went wrong and I had to slam my foot on the break, I’d hurt my hip. So I had my parents drive me to the pool at the gym. Almost every night, I’d go just before closing, trying to find a time when the water wasn’t so choppy. I was so weak and out of shape when I first started going that everything hurt, if I went at at time when there were tons of lap swimmers.

So I’d try to go right before closing, when most people had already gotten out to shower. I’d stay in until the very end and then more or less have to rush outside, with my hair still wet.

There are a lot of pictures of me taken during that time period, of me out with my friends in downtown Boston. All of them are dressed up– high heels, makeup, straightened hair. And there I am– my outfit is cute, but my hair is still wet. (It sounds like a small thing, but honestly– I think my inability to keep up appearances actually affected some of my “friendships,” which I later realized weren’t really friendships.  More on that later).

I was willing to make sacrifices for the sake of getting over this problem. But now I am so frustrated, looking back, because the whole thing seems so pointless.

Turning point #3 came when one of my physical therapists finally showed me how to adjust my SI joints myself using the Muscle Energy Technique. As I’ve mentioned in previous posts, this was also life-changing, because now I did not need to depend on my chiropractor. When my leg got stuck, I was able to free it myself.

That brings me up to where I was in February, when I wrote my post about how I was doing better and things were feeling more stable. I had a feeling the end was sort of in sight, because I was starting to be able to do more and more. But I wasn’t out of the woods yet; I still had to check my SI joint and do my self-adjustments several times a day.

Then, this summer I realized that, after going all of June without having a chiropractic adjustment to my SI joints, I was actually doing better. I decided to experiment with not having any further adjustments to the area, to see what happens.

Here it is: turning point #4.

I can honestly tell you that my SI joints have not locked up once all summer. Things have not necessarily felt perfect, but I can tell it’s just muscle imbalance; it’s not the joint.

That same horrible dull ache at the intersection of my spine and pelvis? Gone. Just a memory at this point.

That awful, painstaking feeling of not being able to move my legs, of having a belt wrapped around my upper thighs?  Gone.  I’m almost starting to forget what it felt ike.

****

It is at once exhilarating and frustrating to realize that I think the very thing which got me started on my road to healing– the chiropractic adjustments– actually became detrimental in the end.

I have seen at least one bad chiropractor who I don’t trust, and would never for a million dollars allow to touch me again.

I don’t see my chiropractor that way.

I think he was, actually, able to correctly diagnose the problem, and I also do think his adjustments were putting my joints into proper alignment.

It’s just that, to an extent, I think my body also needed to be able to find an equilibrium.

The adjustments became too much, somehow.  Perhaps they were too much force for my ligaments, or perhaps they overly disrupted the pattern my muscles were used to holding everything in.

I definitely don’t feel that I was permanently injured by them, or anything like that.

It’s just that, at some point, my body just wanted to be able to locate some sort of homeostasis.  For my muscles and nervous system to have a chance to adapt to the way things were– even if, alignment-wise, it wasn’t “perfect.”

Now, I am certainly not suggesting that I would have gotten better if I had just left my SI joints alone, and allowed them to stay “stuck.”  That absolutely 100% would have failed.  When I think back to that horrible, dull, aching, grinding sensation, of two parts of the joint rubbing together in a way they were never meant to rub together… no.  Absolutely not.  There was no way any form of healing could have come out of that.  You can’t build muscle and get stronger when you can’t even move one of your legs.

But the chiropractic adjustments were just too rough.

I wish I had been shown how to do the self-adjustments from the beginning.  As I’ve learned in all of my PT prerequisite classes, your body has built-in reflexes that keep you from injuring yourself during normal movement.  When you perform a self-adjustment for the SI joint (which involves contracting certain muscles around the joint in a particular way), your nervous system will use these special reflexes to ensure that you don’t injure yourself, or put unhealthy levels of strain on the joint.  There is a level of precision here that no chiropractic adjustment can re-create.

Now, to be fair: I don’t know that I would have been able to develop the skills necessary to identify which way I needed to actually adjust my SI joints, without all of the feedback I’d gotten in my chiropractic visits over the years.  Compared to my PT, I actually think my chiropractor is better at diagnosing exactly what’s happening in the joint.

It’s just that his actual method of fixing that problem ends up backfiring.

Now that I know what I know, I have a lot of ideas for how someone like me could have been helped out of this situation a lot more quickly.

For example, having a PT who really took the time to teach about the SI joint, rather than just prescribing exercises.

Not just about the anatomy of the joint, but how to self-diagnose which way your pelvis is rotated, as in my experience, the self-adjustments have been the way to all healing.

Of course, as I write this,  I also reflect back on the fact that I was lucky to find a PT who knew about the SI joint at all.  Back in 2011, it didn’t seem that most physical therapists were aware that it could cause problems (although thankfully, that seems to be changing).

I am going to continue to talk about the SI joint– both in terms of chronicling my own healing, as well as just to hopefully raise awareness.

I’m also now working on a second site, My Sacroiliac Joint Saga, where I will be talking about everything I’ve learned.

Looking back, all of the tools exist that would have allowed me not to suffer for so long.  It was only ever a matter of finding them.

 

 

 

 

 

 

 

Could my frequent chiropractor visits be making my SI joint problem worse?

Update, Jan. 2018: Hi everyone– I’ve learned a ton since I wrote this post.  Be sure to check out my other site, My Sacroiliac Joint Saga

And now, the original post:

Normally, I tend not to share work-in-progress type posts. I don’t like to take up everyone’s time talking about something I’m not sure about.

I’ve just been through SO much– filled so many notebooks with my scribbles, had so many “epiphanies” thinking I’d figured it all out– only to find out that so many of the things I discovered turned out not to be true.

Now I tend to hold off on making pronouncements– much less asking other people to read about them– until I know I’m not barking up the wrong tree.

But there was one very interesting issue that came out of my trip from San Francisco, and I have a feeling it might be relevant to other people, too.

I think my frequent chiropractic adjustments may have been making my sacroiliac joint problem worse.

Since I developed my SI joint issues in the fall of 2011, I’ve gone to the chiropractor, on average, once a week. (Let’s not even talk about how much money I’ve spent).

When my SI joints first locked up, my chiropractor, Dr. K., was the only one who could even explain to me what was happening. I saw several different physical therapists, as well as a back specialist, and none of them were able to offer any type of diagnosis.

Dr. K., on the other hand, was not only able to explain what was going on– he was able to fix it.  (At least, temporarily).

However, I always noticed that during the first few hours after an adjustment, I seemed to be extra prone to having a setback. I used to try to go for walks following my appointments, but I found that even though my pelvis was “aligned,” one misplaced foot on uneven ground could make me “lose” my adjustment and end up even worse off than if I hadn’t gone to the chiropractor at all.

So I stopped doing anything extra after my appointments. I would try to sit in the car and rest for 20 minutes before driving. Then I’d come home and move gingerly throughout the house, knowing I would be extra prone to setbacks for the next 3 or 4 hours.

I’ve been in this holding pattern with this problem for years. Things are a lot better than they were in 2011, that’s for sure. But my pelvis is still unstable; I still can’t do everything I want.

***

Before I left for San Francisco, I found an interesting comment on one of the SI joint Facebook groups I follow.

Someone wrote that her physical therapist had cautioned her against getting chiropractic adjustments for her SI joint. The reason given was that the force of the adjustments could actually cause the ligaments in the area to stretch out, while they need to “tighten” back up in order to heal.

Something about this idea resonated with me, but I was about to get on a plane in a few days, and I didn’t want to try anything new. So I put it out of my mind, and actually went to the chiropractor twice in the week before I left, hoping to get myself in as good as shape as possible. Both times, my body slid back out of alignment afterwards like butter, and I got on the plane frustrated and expecting to limp for the entire trip.

Yet, during my two and a half week trip, I actually started to feel better.

At first I thought it was my imagination.  After all, it’s a new city– I was excited.  I was distracted.  I had my friends around me all the time– I was happy.

But now that I’m back home, I think a big part of it had to do with the fact that I went two and a half weeks without any chiropractic adjustments.

***

Two days days ago, I went to see my chiropractor. It was actually my neck that was really bothering me– my SI joints actually felt okay.

During my visit, Dr. K. confirmed that my pelvic alignment was actually pretty good. He only performed one small adjustment to the pelvis (at the lumbosacral junction) just to be sure.  Why not have him correct an imbalance while I was there, right?

But on the drive home from that visit, I felt noticeably worse.  I had to drive through a bit of road construction, and although I hadn’t really noticed it on the way there, the way back was different.  I felt every single bump and dip in the road in my lower back and pelvis– little twinges of pain each time.

At one point, the car “thunked” down several inches off of the smooth, finished pavement onto the rough, unfinished surface that came next.  A pain started there that I still had when I got home, and when I got out of the car, I was limping.

That’s when it hit me. Maybe the adjustments are making things less stable. Why, after all, would I come home so much worse off than before I had gone?

To be clear, I wasn’t limping after the adjustment itself. When I walked back out to my car from the office, I felt like everything was fine.

But the adjustment itself may have put too much stress on my SI joint ligaments (and possibly other tissues as well), meaning that the bumpy drive home immediately afterward had a harmful effect.

***

It’s been two days.  Instead of going back to the chiropractor, like I used to do when things felt worse, I’ve been waiting, trying to see if things start to feel more stable.  And, guess what, they are.

I’ve had this funny feeling all along, like something about this problem didn’t add up. After all, I’d met other people with SI joint problems and they’d recovered much more quickly than I had. Why was I the one who could barely move, who I felt as though I was addicted to chiropractic treatments just to keep things lined up?

What if part of the problem has been the chiropractic treatment itself? Is it possible the adjustments have been creating a vicious cycle where, although my joints are put into alignment, my overall stability and ability to maintain that alignment is undermined?

I don’t know for sure, but given how much better and more stable I am beginning to feel again, two days later… I think it’s pretty likely.

It’s a pretty frustrating realization to have, after all the time and money I have dedicated to this “project.” Yet it is funny to note how, again, that San Francisco trip I was terrified of ended up teaching me something I could never have come to realize otherwise.

For now, I am going to forego the chiropractic adjustments, at least on my low back and pelvis, and see how things go.

***

Update #1: It turned out that chiropractic adjustments were absolutely making my SI joints worse.  I’ve stopped receiving adjustments to that area, and the SI problems I had for five years are beginning to fade into the background!  To find out more, check out my follow-up post The end of my SI joint issues is officially in sight!

Update #2: I’ve started a second blog, My Sacroiliac Joint Saga, to share what I’ve learned with others.  Please be sure to check it out!