My Story, Sacroiliac Joint

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

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.

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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 four 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.

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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 a foam roller. 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.

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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 did not seem that most physical therapists did not know 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.

 

 

 

 

 

 

 

Favorites, Inspiration, Interesting Articles, mindfulness

Amy Cuddy on Personal Power, Posture, & Body Language

Here is an amazing talk, given by social psychologist Amy Cuddy, on how the way we feel about ourselves can affect our physical experience of our bodies.   I first stumbled upon it a few years ago, and every time I watch it, I find it’s still relevant to my own life.

Dr. Cuddy’s main argument is that our sense of self directly influences both our body language and our internal biochemistry.   When we feel powerful, we tend to carry our bodies in a way that signals to others that we are in-control and confident.  We stand up tall; we make eye contact.

Conversely, when we don’t feel powerful– when instead, we are experiencing self-doubt– we try to shrink.  We hunch forward, cross our arms, and look down at the floor.

Dr. Cuddy explains that these non-verbal cues send powerful messages to others about how we are feeling, and can directly influence the judgements they make about us.

While that probably won’t come as much of a surprise to most of my readers, what’s really surprising is that, as Dr. Cuddy explains, our own body language can also have a direct affect on how we see ourselves.

Basically, when we hunch over, trying to make ourselves small, our brains recognizes that we are feeling powerless, and our internal chemical state then matches that feeling.  (To get into the nitty-gritty, this means that our brains release more of the stress hormone cortisol).

Conversely, when we take on what Dr. Cuddy refers to as a “power pose,” our brains (male and female) release more testosterone– the “power” hormone.

So, Dr. Cuddy explains, we can actually directly affect our brain chemistry with our own body language.   If we are feeling scared and powerless, we can give ourselves a confidence boost by taking on a power pose.  By assuming the body language of someone who is confident and strong, we send the signal to our brain that it should create an internal chemical state to match that body language.

Of course, it isn’t a magic bullet– nothing ever is– but I’ve tried this out myself, many times, and I do find that “power posing” can have an effect.

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While Dr. Cuddy’s talk is aimed at a general audience, I find an additional layer of relevance within it to my own experience with chronic pain.

Many of the same physical cues we exhibit when we are feeling fearful are also a response to pain and illness.  When I am in pain, or feeling nauseous due to my digestive issues, what do I do?  I hunch over; I round my shoulders forward.  Every classic marker of bad posture becomes exaggerated when I don’t feel well.

Although for me the cycle of “powerless” body language starts as a response to not feeling well. I have to wonder if it becomes part of a self-perpetuating cycle.  I don’t feel well, so I hunch over, which in turn sends the signal to my brain that I’m not feeling great about myself or my abilities.  In general, I tend to feel pretty good about myself, and confident in my ability to accomplish things, but when I am in a lot of pain, that all (temporarily) goes out the window.

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Since first discovering Dr. Cuddy’s talk, I pay way more attention to my posture.  Am I standing up straight, or am I hunching over?  And, if my posture isn’t great– am I in pain?  Or is something in this situation making me uncomfortable?

It’s kind of like the chicken and the egg– there are a lot of factors that can influence our experience of pain, and our posture; how we carry our bodies, what our alignment is like.

But paying attention to our own feelings of power vs. powerlessness can be one piece of the puzzle.   Even if our hunched-over, low-power poses are caused by physical factors such as muscle weakness/spending too much time slumped over our desks/being out of shape/being in pain, there’s no reason why paying attention to our own sense of power can’t contribute to our healing.

Now, when I’m in the locker room at the gym, I stop and check out my posture in the mirror before heading out to exercise.  Am I standing up tall, or and am I slumped?

And I just take a minute to check in with myself, and my goals.  Why am I here right now?  What are my goals; what is motivating me?

I find that just remembering to pause and re-center myself can make a big difference.  I might have a lot of issues going on with my back that I haven’t quite sorted out yet, but not having a sense of confidence doesn’t have to be one of them.

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P.S. For my other absolute favorite TED talk– Kelly McGonigal on Stress and Chasing Meaning, click here!

Creative Writing, Inspiration

One foot in the real world…

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And one foot pointing toward my dreams…

I haven’t been able to write as much as I’d like recently, because I’ve been busy focusing on my real-world exploits: specifically, earning money for grad school.

It’s hard to find the right balance. Follow your dreams and the money will come, they say. But when your dreams involve $70,000 in student loans, and three years with no income… blazing ahead with no thought of the financial risk is a little easier said than done.

For now, I just have to remind myself to slow down, and check in with the part of myself that knows exactly what my dreams are. The part that, despite whatever else is going on in my life, never truly loses sight of what I want to do.

After all, a lesson I’m learning is that it’s not just what you do as you go about your daily life– it’s also how you go about it.

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A mistake I’ve made in the past is to cut myself off completely from my dreams, focusing only on the pragmatics of what I need to get done. At times, it’s seemed easier. Safer.

But I’m realizing that was not a sustainable way to live. When you try to numb yourself to pain and doubt, and rush through life distracted trying not to feel anything… you also miss out on the good.

There is a certain pain that comes from trying to suppress your dreams. If you block it out for long enough, it will grow until you can’t ignore it anymore.

My goal right now is to remain focused on what I need to do in order to achieve my goal, without letting myself get so mired in the details that I lose sight of my original purpose.

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I’ve written a lot about helping people through chronic pain, and that’s a huge part of what I want to do as a PT. But ultimately, it’s about something bigger.

Really, it’s about providing a space for people to begin, wherever they are. To create a space where there is no judgment; where I believe my patients when they tell me how bad it really is, without giving them any reason to feel ashamed, or to censor themselves.

And then, using that as our starting place, we’ll work together to find answers. I know how hopeless things can seem at times, because I’ve been there myself.

Sometimes it can take years to find the right answer– or answers. Sometimes you don’t discover everything you need at once– you discover what you need in stages.

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I want to create a space for people to be in touch with their bodies, in whatever way works for them. To show my patients that you don’t have to wait until you are completely “better,” by some objective measure, to begin to create a sense of peace in your body.

You can actually begin the process right away– before you do anything else, before you’ve spent weeks in PT exercising.  It can actually be the very first thing you begin to work on. Sometimes, you just need to have the right person to show you the way.

I know, because I’ve been lucky enough to find those right people in my own life. And I hope, someday, to give back what I’ve learned, and be that person for others.

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I’ve come so far since the days when I was a terrified teenager with compartment syndrome and an eating disorder.  I may not have gone back to running 40 miles a week, but on the inside, I am millions of miles away from where I was.

There is so much that has gone into changing my perspective, and I hope to share it all with you.  I hope you’ll come along for the ride.

Central Sensitization, Chronic Pain, Favorites, Pain Science

What is central sensitization?

Central sensitization: the back story to just about every story I tell on this blog. I’ve written the phrase a million times, but always in passing, always with a link to an article somewhere else. I think it’s high time the topic gets its own post.

Practice Makes Perfect

We’ve all heard the phrase “practice makes perfect,” right? When you want to get better at something, you practice. Want to learn how to play the piano? Practice. Want to learn how to ride a bike? Practice.

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Photo: t.spang

Our nervous systems are always changing and growing, in response to the things we do. Our brains form new connections all the time.

This is how we learn how to control our fingers, and move them more quickly and in more complicated patterns, when we practice the piano. It’s how we learn to balance when riding a bike. It becomes second nature.

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Photo: Alan Levine

Unfortunately, the same thing can happen when you give your nervous system enough changes to “practice” sending pain signals.

It sounds crazy, but basically, our nervous systems get better at sending these signals. It doesn’t happen automatically– you won’t develop central sensitization if you stub your toe, or get stung by a bee.

But it can happen if the pain goes on for long enough. For example, central sensitization can happen to someone who’s hurt their back, and has been in pain for a few months. The nervous system has been sending these pain signals over and over again, and now– just as if the person had been practicing the piano for a few months– the task has gotten easier.

Central sensitization can also occur in someone who has suffered a larger degree of trauma in a shorter time period. For example, it can happen to someone who’s had surgery– even if he or she was under anesthesia at the time.

This is because central sensitization involves nerves, your spinal cord, and the parts of your brain that process pain without conscious thought. They are still learning how to process all those pain signals, even if you are under anesthesia. (Of course, I’m not saying this will happen to everyone who has surgery. It is, however, a possibility).

In a nutshell, central sensitization means the central nervous system becomes more sensitive.

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Photo: Maryl Gonzalez

There are many different ways in which central sensitization can manifest itself– the symptoms are not always the same from person to person.

The differences have to do with the person’s individual genetic makeup, what the original illness or injury was, and other health issues the person may have. (And yes– the person’s beliefs and perspective on pain can have an impact on how they respond to central sensitization, but they do not cause it. More on this later– I have very strong feelings on the subject!).

Invisible Illness

Scientific research has shown that central sensitization tends to be present in patients suffering from many of the conditions people generally refer to when they talk about “invisible illness.” These conditions include fibromyalgia, chronic regional pain syndrome, migraine, temporal-mandibular joint disorder, chronic pelvic pain, and irritable bowel syndrome.

Sometimes central sensitization is the root of the problem: for example, researchers now generally believe it to be the cause of fibromyalgia (please, please don’t believe the other things you read!).

In other cases, central sensitization is one of several contributing factors (still playing an important role, however). This is more likely to be the case in conditions such as irritable bowel syndrome, which can also be influenced by food intolerances/imbalances in gut bacteria, and temporal-mandibular joint disorder, which involves the physical pathology of the joint. In these cases, central sensitization perpetuates the problem and causes additional pain and discomfort, but is not necessarily the primary cause.

The Common Link

Because central sensitization is the common cause, it makes sense that so many patients with fibromyalgia also suffer from other “invisible illnesses.” For example, studies have shown that significant numbers of fibromyalgia sufferers also have irritable bowel syndrome.

I have so much more to say on this topic– more research to tell you about, the history of how it was discovered, as well as my own personal stories.

But…. as I have to keep reminding myself, I’m writing a blog, not a textbook… so all of that will have to come in future posts!

Citations:

I think it’s important to always post links to scientifically-valid articles when I talk about scientific/medical concepts.

Here is a great plain-English overview on central sensitization, written by Christina Lasich, M.D., for HealthCentral.net.

Next, an incredible overview of the science on central sensitization from Paul Ingraham of PainScience.com, which is an amazing website.

Ingraham’s article is actually a “jargon-to-English” summary of this important review of the scientific literature on central sensitization written by Clifford Woolf, the researcher who first discovered central sensitization back in 1983.

Finally, check out this equally important article from Muhammad Yunus, who has done vital work exploring the common links between central sensitization and the invisible illnesses (he calls them central sensitivity syndromes in this article).

I realize that the average reader might not be able to understand all of the scientific terms in these articles (I know I struggle), but I want you to know that legitimate and credible information is out there, and this is what it looks like.

A Note to My Readers:

I am always happy to answer any questions that you might have.  I think that all of this information is so important for us to be aware of as chronic pain sufferers!  It can really be life-changing, once you start to truly understand the roots of your condition.

I am always so curious to know what you think! Did you already know that central sensitization is believed to be the cause of fibromyalgia?  Does the common link between fibro and other invisible illnesses make sense to you? Let me know!

Inspiration

More Inspiration

At the risk of turning my blog into yet another Shakira fan site, I love this video.

I have been having a lot of trouble with my hips over the past few months. It started when I hurt my knee (yes, my knee) last summer. I was limping around putting too much stress onto my good leg, and before I knew it, the problem had spread to my hips.
I know it’s going to get better— it’s just going to take time, and a lot of exercise in the pool.

In the meantime, I love to plan ahead to when my hips are better. Research has shown that visualization actually can help you maintain your physical ability better during periods of injury. Every time you imagine moving, you activate the motor neurons that would be responsible for that movement. On an almost imperceptible level, your muscles begin to prepare, as if they really are about to move. Visualization basically helps “keep the machine oiled.”

Of course, this is no substitute for real exercise… but it is a great excuse to watch Shakira videos!

P.S. Normally I try to provide citations for all the things I say… but I learned this from my anatomy and physiology professor and couldn’t find a good link. So if it turns out to be wrong, blame him :)

Inspiration

Appreciating our anatomy

i fucking love science photo

Hope this picture doesn’t gross anyone out– I thought it was stunning.  I’m all about cultivating a sense of appreciation for how amazingly intricate our bodies are.  I also love creative works that convey this sense of wonder in an artistic way.

I found this picture at the Facebook group I fucking love science… I really enjoy the things they post.

Chronic Pain, Treatment Approaches

Why you should learn a little anatomy

Fellow pain sufferers, as well as anyone who likes to learn about the body, I can’t stress enough how learning about anatomy and physiology has helped me.

First of all, it makes such a big difference when you can begin to understand medical terminology.  Once you start studying anatomy, you’ll see that medical terminology, with all of its Latin routes, is kind of like a second language.  But it’s a fun second language and it’s not as hard as it looks, because many words share the same Latin roots.  It really ends up being the roots that you memorize, and the rest comes naturally after that.  For example, the suffix -itis indicates inflammation, whether this is tonsilitis (inflammation of the tonsils), tendinitis (inflammation of a tendon), or appendicitis (inflammation of the appendix).  So you know any word that ends in -itis refers to some kind of inflammation.

It doesn’t take that much to learn these terms, and once you do you’ll find you can actually hold your medical records in your hands and understand about 50% more than what you previously would have been able to.  I’m not saying you have to be your own doctor, but at least for me, understanding these words greatly contributed to my own sense of confidence.  Also, a little background knowledge can make little boring things like having a cold slightly more interesting.  You can think to yourself, “oh, the white blood cells are doing this…” etc. etc.

Secondly, a basic background in anatomy will help protect you from falling prey to healthcare scams and misinformation.  Anyone who’s suffered from chronic illness knows how desperate we can get at times for answers, and this is where a lot of enterprising people try to swoop in and sell you supplements, health counseling, and God knows what else.  There are so many ridiculous, snake-oil cures for sale on the Internet, I can’t even bring myself to do a Google search right now.

As I wrote in a previous post, a lot of people with chronic pain believe they have a problem with inflammation.  I used to think this too, and I was always reading about all of these New Age cures that could supposedly fix the problem (herbs, special diets, etc.)

When I took an anatomy class, I learned about how the inflammatory response works, and I also learned about the various blood tests doctors can order to check and see if a patient has an inflammation problem.  (Examples are sedimentation rate and complete blood count).  Then I went home and looked at my medical records and realized my doctor had actually ordered those tests multiple times over the years.  My results had been normal every time.  Suddenly I realized why she had never seemed to take my concerns about having a problem with inflammation seriously.  I mean, it certainly would have been nice if she could have taken the time to explain all of this to me, but I guess after you spend all that time in medical school you forget how foreign those concepts are to someone who’s never heard of them.

In addition, I have found a huge amount of value in developing an understanding of the part of my body that hurts.  Pain is basically your body’s alarm system, and it’s there to keep you from doing things that your body thinks is dangerous.  Of course this is a totally unconscious process.  But I have found that when I can learn more about a part of the body that’s hurting me, and get to a point where I feel I have an accurate and precise mental model of that area, my pain level actually starts to decrease.  Nobody likes uncertainty, and the more you can develop a sense of certainty about what’s going on, the better you are likely to feel.

Of course, this is not true in every situation with every injury.  I really hate when people take these mind-over-matter theories too far.  You can’t use one theory to explain everything that can happen to people.  But I’ve been able to reduce the level of pain I feel many times by using this technique.

Lastly, a basic knowledge of anatomy will help you to protect yourself from future injury because you will start to know a little bit more about how the body is supposed to work, and you will be less likely to perform your exercises with bad form.

Now I realize that not everybody is able to just sign up for a high-school or college course.  The good news is that there are some ways to get this information on the cheap.

A few suggestions:

  • Try auditing a class.  It’s cheaper than taking it for credit.
  • ExRx.net also has some interesting anatomy information.  Check out this list of muscles.

I know I talk a big talk, but the truth is that it was a lot easier to learn all of this stuff when I was enrolled in a class.  I had some really great instructors and I was buoyed up by their enthusiasm, as well as that of my classmates.  So if you have the opportunity to take a class, I do recommend it.  Knowing you have a test coming up is a great way to force yourself to cram this information in, and assuming you have a good teacher, you will probably learn more that way.  I always check Ratemyprofessor.com before enrolling in anything.

But if you can’t, then definitely check out the resources I suggested.  I definitely think it’s one of the best things you can do for yourself, one that might end up saving you time and money in the end.  Good luck!