Chronic Pain, Sacroiliac Joint

An Update on my Sacroiliac Joint Saga, Part 2

In Part 1 of this series, I explained how the learning the “muscle energy technique” from my physical therapist Paula marked a turning point for me in my SI joint journey.

Above, I’m including a Youtube video of a physical therapist demonstrating this technique.  (I actually use a few different variations on the moves she does, but the principles behind it are exactly the same).

By using this approach regularly, I’ve not only been able to keep my SI joints better aligned, I’ve also developed more of an understanding of how the pain and sensations I feel correspond to the anatomical reality of what’s actually happening down there.

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For me, this whole process has had to be very intellectual.  The movement patterns of the sacroiliac joints are some of the most complex in the body.  It wasn’t a matter of simply doing my exercises and getting stronger, because this joint is like a puzzle.

The SI joint reminds me of those old metal “tavern puzzles” they made in the Colonial days (http://www.tavernpuzzle.com/).  I don’t know if most of you would have ever seen one—I grew up in a town with a lot of Revolutionary War history, so I feel like I grew up playing with these things.

They are impossible to figure out by just looking—they’re too complex.  Instead you have to just start moving the different parts around, hoping the solution somehow becomes clear as you go along.  Half of the time, you move a piece and realize it actually just made things worse.

That’s been my experience with the SI joint.  It’s been so unpredictable, the things that will cause my SI’s to “slip” and lock. Walking on a flat, well-maintained trail at my favorite conservation land?  No big deal.  Going to a party and sitting on someone’s dilapidated old couch?  I sink in instantly, and my hips are locked again.

It doesn’t help that everyone’s SI joints are different.  Obviously we all have the same bones down there, but the shape of these bones and the way they fit together can vary widely from person to person.

For this reason, things that can work well for one person might not work at all for another.  I’ve tried techniques and exercises that other people have sworn by, and found they made me worse.

Only by learning, and developing a sense for exactly which types of motions and textures are going to create instability in my pelvis, have I been able to make sense of my own SI joints at all.

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What about mind over matter? a lot of people have asked me.  Why can’t you just push through it, even if it hurts?

What I wish they could see is that it has been mind over matter, just not in the way they think.

There’s no pushing through an SI joint that has locked.  Anyone who’s experienced this will know what I mean.  It makes about as much sense as trying to use brute strength to unlock one of those tavern puzzles.

But you can use your mind to learn about the anatomy of the joint, and solve the puzzle that way.  Technically it’s still mind over matter, but in this variation it’s about being open, receptive, and mindful, rather than trying to harness sheer force of will.

To be continued in Part 3!

 

Chronic Pain, Pain Science

The benefits of swimming in cold water

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Today, Ruby shocked me by taking her first swim of 2014.  It was awesome.

As you may remember from my previous post about her, Ruby is my family’s 14-year-old Lab mix (she’ll be fifteen in July!).  She is a spunky, spirited dog, but due to some benign tumors in her left hip, as well as arthritis, she is in pain almost constantly.

We’ve done the best we can to keep her pain in check with medication and reassurance, but you can still very easily see how much pain she in.  She limps, often keeping her back legs together and doing a “bunny-hop” to get up the front steps.  She is usually in too much pain to come upstairs at night, so every night I sit and talk to her until she falls asleep at the bottom of the stairs.

But today– well, Ruby simply had an amazing day fetching sticks and walking around the fields at our favorite spot.

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Fetching sticks out of the river… Ruby’s all-time favorite pasttime.

Of course, it helps that the weather is finally warmer (trust me, we New Englanders were starting to collectively lose our minds after this completely absurd winter!).  But what I really think made the difference for her today is the benefits that come from swimming in cold water.

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Swimming in the cold isn’t really fun, at least for humans.  Part of the reason I took so long to start working out in a pool after first hurting my knee a few years ago is that when I first tried it, I couldn’t get over how cold it was.  Here I was, trying to warm my muscles up enough for them to loosen up, and I couldn’t stop shivering.  My teeth were chattering audibly.  What the heck.

But when I finally started doing it regularly, I was amazed to find it made an incredible difference in my pain.  Here are the reasons why:

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#1: Reducing blood flow

When you immerse yourself in cold water, it causes the blood vessels in your extremities, particularly those which are the closest to the surface, to constrict.  This is because your body is trying to send as little blood as possible to the periphery of your body, and keep more blood in the center of your body, to help keep your core temperature warm.

From an evolutionary perspective, this is because if we’re trapped out in the freezing cold, or we fall into a freezing lake, it’s essential that we keep our internal organs working.  If it comes down to it, we can survive without a few fingers or toes.  We absolutely cannot survive without a liver.

Of course, when you’re simply swimming in a chilly swimming pool, you’re not anywhere near the point of developing frostbite.  But the minute your body senses that cold stimulus, it starts that process of constricting your blood vessels, which in turn limits the flow of blood to the periphery of your body.

This means that if you have a particular part of your body that’s inflamed– for example, let’s say it’s your ankle–  you can temporarily stop the cycle of inflammation by reducing the flow of blood to that area.   Your blood is what brings the ingredients for more inflammation to your ankle.  If you reduce the flow of blood, you aren’t allowing those ingredients to come and produce more swelling.  The cycle is temporarily stopped.

#2: Cold slows the rate at which your nerves send pain signals

Anyone who’s ever been outside in the winter without gloves knows this: when part of your body gets cold enough, it will start to go numb.

The pool can be a much more subtle version of this.  I know that after I’ve been in the water for about ten minutes, I’ve totally forgotten about the aches and pains that were a “6” out of “10” all day.

This is because, when your nerves are cold, they simply can’t fire as fast.  This gives your brain a little break from receiving all of the constant input it was receiving, which in turn can have a calming effect. By the time you’ve gotten out of the water, your brain is perceiving your pain differently, and it’s sending fewer messages to the nerves in the rest of your body asking for more “information” about the pain.  Needless to say, this is good.

#3: Cold causes your body to release endorphins

Over the past few years, I have heard of many studies that show our bodies release endorphins in response to cold.  (Endorphins are chemicals produced by our bodies that help relieve pain and improve mood).

I actually have a few friends who swear by taking ice cold showers to improve their mood and help them “wake up.”  Of course, I’m not asking you to go swim in ice water– I think you can get the same effects with mildly chilly water.

This phenomenon is something that is not yet completely understood, so I wanted to be sure to provide links to a few credible studies, rather than simply asking you to take my word for it.  Here is one study that looks at cold as a possible treatment for depression; here is another that examines it as a possible treatment for chronic-fatigue syndrome.  (Don’t worry, I definitely didn’t understand all of the mumbo-jumbo either!).

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I have personally found that chilly water makes a much bigger difference in my level of pain than the heated therapy pool I used to work out in.  The therapy pool was relaxing, but I still felt all of the exact same pain that I had been feeling on land.  When I switched to swimming in a regular pool (which is still heated, just not hot) I was shocked to notice that, after about ten minutes, those pains were almost completely gone.

There are many other benefits that come from working out in water.  They are equally fascinating to me, so of course I will be covering them in future posts.  But for now, I will leave you with this:

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A few minutes after she got out of the water today, Ruby sped up and started to prance.  Completely out of the blue, she was trotting, quicker than I’d seen her move in months.  I could just tell what she was thinking:

“I can move!  Wow!  I can move as fast as I want!  I can’t believe I’m not tired!”

It was true– we hadn’t gone for a walk that long in months, let alone a walk and a swim.  It was clear as day, the expression on her face.

For a moment there, we both got to see just what her body was capable of, if only we provided it with the right conditions.

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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!

Chronic Pain

How a physical therapist helped me through my lowest point, Part 6

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**If you are new to my blog and would like to start at the beginning of this series, click here.**  

Part 6: Re-adjusting my concept of what is “dangerous.”

When I was running long-distance in high school, I’d really pushed my limits.  Pain didn’t scare me as much as my irrational fear of gaining weight and not training hard enough.  I had rarely let pain stop me, and on more than one occasion, I had paid a price for that refusal.

As a freshman, I had partially torn my hip flexor off of my hip bone during a cross-country race.  I’d had some pain in the few days before the race, but one mile in, endorphins had taken over, and I felt no pain.  Then, as I sprinted down the finish line, my right leg completely gave out beneath me, and I’d had to hop across the finish line on one leg.  After that, I was on crutches for months.

Then, while training for track during my junior year, I’d developed compartment syndrome.  I’d had pain and a feeling of “deadness” in my calves for weeks, and I continued to push it.  Running was the only thing that chased the dark clouds of depression away, and I was excited about the fact that, once track started, I was going to be in amazing shape.  Instead, by the end of the season, I was barely able to walk.

After these injuries, I’d sworn I was never going to let anything like this happen again.  How could I have been stupid enough to ignore all the warning signs?  My body had tried to tell me again and again that it was a bad idea, and I hadn’t listened.  So I promised myself I’d never ignore it again.

But now, in physical therapy, Tim helped me to realize that maybe I’d gone too far in the opposite direction.  There was a big difference, he said, between pain in someone who’s running 40 miles a week, and pain in someone who is basically sedentary.

My nervous system was functioning differently now, as a result of the physical traumas I had endured.  It was as though my body was looking at pain through a magnifying glass.  A little muscle spasm that I might have been able to ignore in the past was now debilitating.

I might have the same amount of pain now, just walking down the sidewalk, as I’d had running at seventeen.  But, Tim explained, I wasn’t subjecting my body to anywhere near the same amount of forces.  I might have the same amount of pain as I’d once had running, but it didn’t represent the same amount of “danger” to my body.

From running, I had learned that the way to respond to something that was agonizing was to stop and rest.  If something hurt that much, it must be on the verge of rupturing, of tearing… tendons were about to come unattached.  Right?

Wrong.  I was doing what anyone in my situation would do—taking the information my nervous system gave me at face value.  But Tim helped me to see that, because my body had adjusted its “criteria” for causing me to feel pain, I needed to change my own “criteria” for evaluating that pain.

Things just weren’t as dangerous, Tim promised me, in someone with my level of physical activity (or lack thereof) as they were in a long-distance runner.  I might be feeling a muscle spasm that hurt just as much as a pulled muscle when I was running, but– given the fact that my nervous system was revving everything up, and that I was not subjecting my body to anywhere near the same amount of forces– it was nowhere near as dangerous.

Tim urged me to stop thinking of pain as a sign that something was ripping or falling apart.  Those types of injuries were definitely possible when I was running a 5K race, or pounding down a track at 5:30 mile pace.  But they were simply not possible in a generally-healthy twenty-five year old who went for a walk a few days a week.

It seems obvious now, but of course, pain is specifically designed not to let us ignore it.  There’s no way to tell, based on sensation alone, whether or not a painful sensation is safe to ignore.  Pain doesn’t come with labels saying “this is inflammation in your joint” and “this is an overworked muscle.”  It all just feels dangerous.

What I love about Neil Pearson’s approach is that it in no part blames the person with pain for what has happened to him or her.  Instead, he suggests that the person in pain ask him or herself, “Is this really dangerous?”

Pain is designed to draw our attention to something, to make us change our course of action.  But that doesn’t always mean that we have to stop using that part of our body completely.  Sometimes, our nervous system just wants us to focus on something; to give it the attention it deserves; to make an educated guess about what is needed.

Maybe it means we decide to only walk for five minutes, instead of ten.  Maybe it means we promise ourselves that we’ll schedule that doctor’s appointment as soon as we get home.  Maybe it means we promise our aching neck that we’ll get a massage soon.  All of these things can actually have an effect on reducing pain.

When you stop and focus on what your body needs, it stops trying so hard to get your attention.  I’m not saying that this is a miracle cure and you’ll never feel pain again.  But you might find that the pain becomes manageable.

When your body sends you pain signals, it wants you to answer the question, “Is this dangerous?”  Your body doesn’t have all the answers; something that’s painful might not always be harmful.  It just means your nervous system thinks it might be, and wants you to find out for sure.

This is why something as simple as scheduling an appointment with a doctor you trust might actually reduce your pain.  Your body wanted you to answer a question, and you took a proactive step towards getting that answer.

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Of course, I probably wouldn’t have made as much progress if I had tried to use this approach on my own.  It really helped to have someone else there with a lot of expertise who could help me make an educated guess about what was really going on in my body.  I was completely terrified by the concept of trusting my body, and it really helped to be able to ask Tim what he thought the pain meant.

I trusted him because, well, he took the time to earn my trust.  He didn’t have me in the gym trying to do exercises on my very first day.  Our first four visits were all spent talking about the information in the Neil Pearson lectures, and about my past experiences with injury and exercise.

I’d had many other physical therapists in the past who’d expected me to just get up and do all sorts of exercises right away.   Based on my diagnosis, they said, I “ought” to be able to do all sorts of things.  And when I would refuse, saying I was scared, it would turn into a conflict.  I’d either end up doing the exercises, which would of course increase my pain because I was scared, or I’d get a lecture about how I had to listen to this person if I really wanted to get better.

Tim didn’t ask me to do any exercises until the fifth visit; only after he’d spent the previous four reassuring me that there were, in fact, a lot of exercises I could do safely, and that my body was capable of handling much more than I thought.

He started out by having me walk on the treadmill.  The first day, I only did five minutes.  The next visit, I did ten.  Of course, I was apprehensive, but the important thing was that I didn’t feel like I was being forced to do something.  I knew it wouldn’t turn into some kind of huge conflict or battle of wills if I needed to stop.

From there I gradually progressed to other exercises.  I had been terrified to use the elliptical trainer, although up until the pain became debilitating it had been my favorite machine.

One day Tim convinced me to get on for just three minutes.  Just to see how it felt.  “Is this dangerous?” he asked.  “No.  No way this is dangerous for you, in just three minutes.”

Three minutes ended up feeling so great that I ended up doing ten.

To be continued in Part 7!

**Track meet picture courtesy of oscarandtara on Flickr.**

Healthcare, Interesting Articles

New York Times: The Heart Perils of Pain Relievers

An interesting look at the risks that come from taking anti-inflammatory medications.

http://well.blogs.nytimes.com/2013/06/17/the-heart-perils-of-pain-relievers/?_r=0

The article quotes one doctor as saying, “If these drugs are making your life a lot better, that may be worth the risks.  But a lot of people will tell you, ‘I can’t tell if they’re doing anything, I just take them every day anyway.'”

I think a lot of people with chronic pain are told by their doctors to take these medications.  They are considered by most doctors to be a lot safer than some of the alternatives, which carry a risk of dependency and have a potential for abuse.

But NSAIDS have never really done much for me.  They help if I’ve  strained a muscle in a very acute manner, or when I’ve had a specific injury such as an ankle sprain.  But for ongoing, chronic pain where the original injury happened a long time ago, NSAIDS don’t seem to do much.

Don’t take NSAIDS just because your doctor recommended them.  Make sure they are actually producing a reduction in pain before subjecting yourself to the risks.

Chronic Pain, Fibromyalgia

How a physical therapist helped me through my lowest point: Part Four

This is the fourth part in a series about an amazing new approach to physical therapy for chronic pain patients.  To start from the beginning, check out Part One, Two, and Three.

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For the first few visits, all Tim and I did was talk.  He didn’t have me in the gym doing exercises like all the other patients I walked by on the way in.  Instead, we sat in a quiet area and talked about what I had learned from Neil Pearson’s lectures.

What I learned is that pain is so much more complicated than we think.  When I first learned about the nervous system in high school biology, I was taught that nerve impulses travel through the spinal cord to the brain, where they are interpreted.

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This is a very simple model, and on a basic level it’s true.  That is how nerve impulses get to the brain.  But when it comes to the experience of pain, there are many additional factors.

Normally we think about the nervous system as a one way street, where signals are only travelling to the brain. But what I learned from Tim is that the experience of pain is a lot more complicated.  Our brains are constantly evaluating input from our nervous system, trying to sort out which signals are important for us to know about, and which aren’t.

Our brains are filtering our experiences all the time, determining what is and what isn’t important for us to know about.  After all, it wouldn’t make sense for us to be aware, on a conscious level, of every little thing that’s going on in our bodies.  We don’t need to feel, at all times, the sensation of clothing on our backs.  We don’t need to wake up out of a deep sleep just because there is a blanket touching our legs.  Our brains filter out information all the time, so that we can focus on more important things.

On the other side of this equation, the brain can actually “turn up the signal” on something it thinks we need to know about.  If a part of your body hurts and you try to ignore the pain and go about business as usual, your brain will make that pain louder.  It isn’t doing that to be annoying; it’s trying to protect you.

Lorimer Moseley tells a revealing story about the time he was walking in a nature preserve when a stick brushed against his ankle.  He had once been bitten by a poisonous snake in that same nature preserve, also on his ankle.  He freaked out and fell to the ground, writhing in excruciating pain.  He told his friends to call for help, thinking he needed to get to a hospital as soon as possible.

A few moments later he looked at his ankle and realized there were no bite marks.  There was, instead, a stick lying on the ground next to him with a sharp point.  He was then faced with the awkward task of telling his friends he was wrong, that there was no snake, that he’d freaked out over nothing.

This is how the nervous system works.  It is not meant to be “accurate.”  It is meant to protect us.

When Moseley’s nervous system felt the stick scrape his skin, it knew that the last time it felt those sensations, there had been great danger.  It also knew that not only was he outside, but he was walking in the exact same nature preserve where that same danger lurked.  His nervous system decided to tell him about the dangerous thing that had just happened to his ankle, and it told him about it loudly.  This is how the nervous system works; it decides how much danger we are in based not only on physical sensations but also on context.

Normally when we notice these little idiosyncracies of the nervous system, we are embarrassed.   These little errors in judgment can make it seem like we’re crazy, or overly anxious or neurotic.  But this is how the nervous system works.  It is not meant to be “accurate,” it is meant to protect us.   Even when our nervous system doesn’t have the whole story, it fills in blanks as much as possible, taking our fears and beliefs about the situation into account.

In people with chronic pain, the body’s protective response has gone haywire.  It’s as though the nervous system’s threshold for action has been lowered, and things that didn’t seem dangerous before now seem very dangerous.

It’s like we’re Lorimer Moseley walking through the nature preserve, all the time.  The difference is that Moseley’s case was a singular event based on coincidence: the stick brushed up against him in the same place that the snake had bit him, and he was walking in the exact same park where he had encountered the snake before.  While Moseley’s experience had a concrete end, every day chronic pain patients encounter “sticks” that our bodies interpret as “snake bites.”

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The good news is that, because the nervous system takes our conscious beliefs about pain into account when making judgments, we can actually affect how it reacts to various stimuli.  (I want to be very clear here: we do not cause chronic pain with our thoughts and beliefs.  This is an oversimplification, and it’s also insulting).  But the nervous system does pay attention to context when deciding how dangerous something is.

In his lectures, Neil Pearson says that when your pain starts to get worse, you should ask yourself “Is this really dangerous?”  An increase in pain is a sign that your nervous system has decided whatever you’re doing is dangerous.  But is that really the case?  If you’ve been living with pain for a long time, it might not be.

This is where your conscious thoughts and beliefs can play a role in breaking the cycle of pain.

I had lived with pain for so long that my view of what my body could and couldn’t do had gotten very warped.  I felt pain every time I tried to walk, or lift something, or go up and down stairs.  I thought my body was weak, that there was something fundamentally wrong with it, and every time I pushed myself it seemed to get worse.

Tim helped me to recognize that the pain I felt was not necessarily an accurate barometer for what was wrong in my body.  The reason I had a setback every time I exerted myself, he said, had more to do with my nervous system freaking out than the fact that I had actually pushed my healthy twenty-five year-old body to its limits.  When my body began to hurt, I was to say to myself, “There’s my nervous system again.  Freaking out.  But that doesn’t mean anything is wrong in my body.”

Tim and I talked a lot about how the body works, and how I wasn’t going to hurt my back, or my legs, or my ankle just by doing basic things.  Because one of my major complaints was back pain, we talked about the anatomy of the back, and how my MRI showed I didn’t have any serious pathology.  Tim promised me that my body was so much more capable than I thought it was, and that once I could help my nervous system calm down a little bit, I would see that.

We also talked about what kinds of things would produce pain in a person whose nervous system wasn’t freaking out.  It honestly really helped me to have a trained physical therapist to bounce ideas off of.  I trusted Tim.  If he told me the pain I felt was likely coming from my freaking-out nervous system, rather than any physical damage, I believed him.

We talked about my leg surgery several years before, and how I was afraid my compartment syndrome was going to come back if I pushed my legs too much.  We sat down and had a rational discussion about this; how unlikely it was, but what the worst case scenario really would be if it came back.  This helped to reduce some of my fear, and give back a sense of control.

We also talked about my ankle, which I had sprained a few months earlier.  It still hurt a lot of the time, and I had a lot of trouble walking and driving.  Tim explained that I wasn’t going to re-sprain my ankle just by performing normal activities.  Since it had been a few months, he said, the majority of the healing had already occurred.  As long as I kept my ankle within the normal range of motion, I wouldn’t be doing anything to make the sprain worse.

This actually made a striking difference in the amount of pain I felt in my ankle.   My nervous system had been interpreting the sensations in my ankle as very dangerous, and as a result it was very painful.  But once my brain understood that my ankle wasn’t in any real danger anymore, my nervous system no longer saw the need to tell me about it all the time. Over the course of the next few weeks, the pain in my ankle gradually melted away.

It’s almost embarrassing to admit something like this– that my ankle, which had been bothering me for months, stopped hurting as soon as someone explained to me that it wasn’t really dangerous.  But it shouldn’t be embarrassing.  This is how our nervous systems work: they take into account both physical signals as well as our mental interpretation of events.

If you’ve undergone the process of central sensitization, your nerves, spinal cord, and brain have changed in ways that cause you to be more sensitive to pain.  Scientists don’t yet know whether or not these physical changes are actually reversible.  But the good news is that whether or not you can undo the effects of central sensitization, you can still break the cycle of pain by changing how you react to pain on a conscious level.

Continued in Part 5.

**The top picture was taken in the Australian Outback, which is where many of Lorimer Moseley’s stories take place.  Published by Mark Veerhart under a Creative Commons license.**

**Mulberry sticks picture courtesy of JodiGreen**

Healthcare

Why do some hospitals get away with charging such exorbitant prices?

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The Center for Medicare and Medicaid Services published a ground-breaking report yesterday looking at the average prices charged by 3,000 U.S. hospitals for the “top 100 most frequently billed charges.”

The report shows that different hospitals appear to charge wildly different prices for the same procedures, seemingly without any rhyme or reason.  While one hospital might charge $5,304 for a hip replacement, another might charge $223,373.

While it’s true that the same types of procedures can be more or less intensive depending on whether or not the patient experiences complications, this study was based on an averaging of costs.  This means that the data is unlikely to be skewed by patients with complications.

Here are a few more choice pieces of data, as summarized by the Washington Post:

  • For heart failure with major complications, the average price ranged from $13,960 at one hospital to $75,197 at another.
  • For kidney failure with major complications, the average price ranged from $16,366 at one hospital to $80,919 at another.
  • To treat esophagitis and digestive disorders, the average price ranged from $7,107 at one hospital to $37,750 at another.
  • The prices charged by for-profit hospitals to Medicare were, on average, 29% greater than the prices charged by nonprofit or government hospitals.

Unfortunately, I wasn’t too surprised by some of these findings.  I think that, at this point, pretty much everyone knows someone who’s been screwed over by a crazy hospital bill.

One example is this story about Robert Reed, a patient who was charged $1,525 by a hospital he had not even been to.  Reed had had a procedure performed by a dermatologist who was affiliated with the hospital, but whose physical office was 1.5 miles away.  The doctor only charged $354 for her services, but the hospital charged $1,525 in fees for an “operating room” and “facility” Reed had not even been to.  This kind of price inflation is legal, and it happens all the time.

If you ask me, this is the problem with the American healthcare system.  Until now, medical institutions have been able to keep their prices a secret.

I can’t think of any other industry where it’s legal to keep the price a secret from the consumer until after he or she is legally obligated to pay it.  Buying clothes at a store?  There’s a price tag on them.  Getting your hair cut at a salon?  There’s a sign on the wall with prices on it.  Buying a car?  There’s paperwork to fill out once you and the salesperson have come to an agreement.

Now, to be fair, the prices hospitals list for various procedures are often much higher than the prices individual patients are asked to pay.  For one thing, many insurance companies have their own special “agreements” with hospital networks.  I see this on my own medical bills all the time: the first few lines represent the “actual” price which the hospital would like to charge, and the next few lines show what is called the “allowed” charge—in other words, the special deal my insurance company worked out as part of its contract with the hospital.  As the subscriber, the price I pay is based off of the “allowed” charge, not the much-higher “actual” charge.

But as you can see from the Center for Medicare and Medicaid services report, these “special agreements” don’t do much to level the playing field in the long run.  When hospitals are able to inflate their charges to Medicaid and health insurance companies by tens of thousands of dollars, we all pay in one way or another.

Regardless of where you stand on the political spectrum, it should bother you that up until now, hospitals and other medical institutions have been able to ride roughshod over the consumer.  If you’re inclined to defend these hospitals out of a belief in the “free market,” I’d like to point out to you that it’s not a free market when consumers are unable to make informed decisions.  If we are going to rely on competition to reign in cost, consumers need to be able to know the estimated cost before they undergo a medical procedure.

This report was step in the right direction, and I am cautiously optimistic about the future.  The Center for Medicare and Medicaid Services says that the report is part of an increased push for transparency in the healthcare industry on the part of the Obama administration.  I think we can all agree that the price discrepancies shown this report are totally ridiculous.  Private hospitals may have the legal right to set their own prices, but we as consumers ought to be able to know what those prices are, just as we would for any other purchase.

**Money picture published by 401 K (2013) under a Creative Commons license.

Central Sensitization, Pain Science

How to Talk About Pain: Central Hypersensitivity

girl grimacing

It’s amazing how sometimes a piece of writing that’s only a few paragraphs long can help to clarify something you’ve been thinking about for a while.

I found a great article on Body in Mind last night that I felt did a great job summarizing the concepts I’m trying to get at on this blog.

I’ve been struggling to find a catch-phrase to use on my blog, a succinct way of referring to the changes that can take place in a person’s nervous system following a traumatic event that cause her or him to be more sensitive to pain.  (If you are new to my blog, I talk more about how this process occurs here).

I knew that these changes are brought about by a process known as “central sensitization,” but I was struggling to find a way to refer to the end result of this process.  I mean, “chronic pain” and “fibromyalgia” are good terms, but there are a lot of theories floating around about what causes them.  In my blog, I focus on the pain people feel as a result of changes in the way their nervous system processes pain.  I needed a snappy term that would allow me to be very specific about this condition.

Luckily, this article provided me with just that.  The author uses the term central hypersensitivity, which makes so much sense.  (At least, it makes sense if you’re a dork like me who reads about this stuff in her spare time).

For the non-dorks, let’s take a look at this word.  In medical terminology, central pertains to the central nervous system: the brain and spinal cord.  Hypersensitivity, means, well, that something is extra sensitive.  So in central hypersensitivity, a person’s brain and spinal cord are extra sensitive.

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I also liked how this article discussed central hypersensitivity not as some freak occurrence that happens to very few people, but instead, as something that can happen to anyone.  In fact, it probably happens, to some extent, to anyone who experiences pain from a musculoskeletal injury for over six months.  Central hypersensitivity is way more common than science previously thought.

The author of this article (Tracy Paul) discusses this concept in the context of shoulder pain, but that’s because when scientists conduct studies, they have to be very, very specific, lest anyone accuse them of jumping the gun.

She writes, “People who are experiencing central hypersensitivity may continue to perceive pain even after adequate treatment for their shoulder and time to heal, which may be due to hypersensitivity not shutting off as it should in the normal situation.”

But this quote applies to just about any musculoskeletal condition that causes someone to be in pain for months on end.  Paul clarifies that central hypersensitivity has been associated with “…many other chronic conditions such as whiplash injury, fibromyalgia, low back pain, osteoarthritis and hemiplegic shoulder pain.”

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When I look back at what’s happened to me over the past decade or so, I can see how Paul’s description of central hypersensitivity describes me perfectly, if you just substitute the words “lower legs” in the place of “shoulder.”

After I had surgery for chronic exertional compartment syndrome, I still experienced strange symptoms in my lower legs.  For the first few months after surgery, especially, I felt as though my lower legs were full of water. It was a physical therapist who explained to me that these were actually nerve sensations, and that by all objective measures, my legs were ok.  For the first year or two following surgery, my lower legs and feet were extremely sensitive.  It was really hard for me to adjust to new shoes, even if those new shoes were flats.  (This may be hard for anyone who knew me in high school to believe, but I will never, ever wear heels again).

Things have gotten better now.  Some of the more crazy neurological symptoms in my legs went away over time.  I still experience central hypersensitivity, but even that is a work in progress, and I feel as though it is slowly diminishing over time.  Once I learned some of the techniques to work with the nervous system that I will be discussing more on this blog (check out this post to start) my nervous system began to calm down a bit, and I am hopeful for the future.

Interesting Articles

Know your enemy

art of war

Have you ever had a totally disappointing experience seeing a specialist for help with chronic pain/fibromyalgia?  I certainly have… many times.  Fellow pain sufferers, we are fighting an uphill battle to be taken seriously.

I found this article today written by a rheumatologist on why he doesn’t want to treat fibromyalgia patients any longer.  He basically sounds like a jerk… but a smart jerk. I’m posting the link to what he wrote because it provides a look into what some of these doctors are thinking while they’re brushing us off.

The article is by Dr. John Luetkemeyer, a rheumatologist in Florida who tries to “weed” fibromyalgia patients out of his practice as quickly as he can, unless they have proven “they are willing to do the things that might be successful in improving their quality of life.”

I’ve never met Dr. Luetkemeyer, but I might as well have.  I feel like this letter could have been written by any one of the many unsympathetic doctors I’ve seen over the years.  Unfortunately, I’ve gotten this kind of response from people in multiple specialties, including pain management, the specialty he suggests ought to be responsible for fibromyalgia patients.  He makes a good point though, that pain specialists might be more effective “if only we could get them to put their needles down long enough to actually treat the pain and the patient.”

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There is a great rebuttal at the end of the piece, written by Dr. Murray Sokolof.  I’ve obviously never met him either, but he sounds like my kind of doctor.  He writes, “I found many of Dr Luetkemeyer’s remarks and opinions quite disturbing and even offensive. He certainly does not speak for me.”  Right on, Dr. S.

The most interesting part of the whole piece, I thought, was Dr. Sokolof’s reference to opioid pain medications.  He says,

“It has occurred to me that if I were not able to use opioids in the management of fibromyalgia, then I, too, would lose interest in taking care of these patients. Opioids are to fibromyalgia what corticosteroids are to rheumatoid arthritis. We try to avoid them if possible, but when they are necessary—which is often—we should employ them. Maybe, just maybe, Dr Luetkemeyer refuses to give these patients opioids for whatever reason. If that is the case, I could understand his frustration and his decision not to treat these patients.”

Yes.  That summarizes my thoughts on opioids exactly.  They definitely have their drawbacks, but when you are in extreme pain, there is simply nothing that will compare to them, or take their place.  I do not take them on a regular basis, but they were a godsend when I hurt my back a few years ago.

The reason I am sharing this article with you is that most doctors, in my opinion, think like Dr. Leutkemeyer.  They might be a little bit nicer than him, but I think most of them think that there are simple lifestyle changes that fibromyalgia patients need to make, like exercising more or sleeping better, and that all of their symptoms will get better if they make those changes.  He writes,

“If fibromyalgia is the label to be used, it is my belief that ‘a jog around the block or 20 laps in the pool can make a dent’ in the low pain threshold and poor sleep pattern hypothesized in fibromyalgia. I also stress the importance of patients being responsible for their therapy (exercise, stress reduction) and not to rely on my prescription pad.”

I mean, exercise and adequate sleep are both great, but for many people, it is never that simple.

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I found this article interesting simply because it’s best to know what you’re up against.  Know your enemy, they say.  Don’t feel bad about yourself, or take it personally if a doctor gives you the brush off.   He had already made up his mind about fibromyalgia sufferers long before you walked in the door.

Does this article remind you of any doctors you’ve met in your own life?  Were they helpful/not helpful?  Let me know what you think!

**Update: I think some readers might be having trouble with the link.  If you’re getting stuck on a log-in screen, try Googling “Rheumatologists should not deal with fibromyalgia” (the title of the article).  Medscape is so weird sometimes, it’s like you can gain access if you come from a search engine, but not from a direct link.  Why that is, I wish I knew.

**The photo I chose for this post made me laugh.  I believe “Know Your Enemy” comes from Sun Tzu’s “The Art of War.”  Thanks to Bob Massa on Flickr for making the photo available through Creative Commons.**

Chronic Pain, Favorites, Fibromyalgia, Pain Science

Understanding pain as an overprotective friend

grand canyon

Let’s say you’re sightseeing at the Grand Canyon.  You are with a trusted friend enjoying a scenic overlook when notice your friend is walking a little bit too close to the edge of the cliff.

“Hey, watch out!” you say.  You can see that no one else is standing that close to the edge.  Your friend keeps going.

“Hey!” you shout.  “I think you’re too close!”  Your friend still keeps going.

You start to panic.  Your pulse races.  You’re starting to get a picture, in your mind, of what it would look if your friend actually fell over the edge.  “OH MY GOD WHAT ARE YOU DOING?” you scream at the top of your lungs.

This is a metaphor that my favorite pain researcher Neil Pearson uses to explain how pain works.  Pain is like a friend that’s trying to protect you, and if you ignore it, it will get louder.

grand canyon 2

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As I touched upon in a previous post, pain isn’t always an indicator that something is wrong in your body.   Sometimes, your nervous system causes you to feel pain as a warning.  For example, maybe you are performing some kind of motion or exercise that is going to hurt you—pain will prevent you from stretching a muscle or a joint past its normal range.  You feel pain before you have pushed the stretch too far and actually strained anything.

To come to terms with chronic pain, you must first understand that pain doesn’t necessarily mean that a part of your body is injured.  Instead, it means that your body is warning you about something, or that it wants you to change your course of action.

A lot of the pain scientists I cite on this blog offer anecdotes about how pain is not always correlated with a person’s level of injury.  This is important to understand, because it can help people with chronic pain and fibromyalgia not to fear the pain so much.  I find these stories fascinating, so I will be passing them on as much as I can without feeling like maybe I’m relying too much on someone else’s work (it’s hard, because I honestly just want everyone to know what these guys say!)

But it’s also important to understand that all these stories about how pain doesn’t mean you are necessarily injured do not mean you should ignore pain.  That is what I absolutely love about Neil Pearson’s approach.  Even though he is all about teaching people not to fear pain so much, he still says that you have to respect it.

grand canyon 3

Pain is like that overprotective friend.  Pain occurs when your nervous system has decided that something you are doing is dangerous.  This is true whether an injury has already occurred (for example, you sprained your ankle and now your body is telling you to get the heck off of it!) or whether your body thinks an injury might occur (for example, you’re pushing a stretch too far).

Regardless of whether or not a physical injury has already occurred, if you try to ignore pain and keep doing what you are doing, it will get louder.   When you’re doing something that your body thinks is dangerous, your nervous system becomes that friend screaming at you to stop getting so close to the edge of the Grand Canyon.  The more you keep going, the louder your nervous system gets because it’s panicking—the same way you would if you saw a beloved friend too close to the edge.

Of course, this doesn’t mean you have to be crippled by your pain, either.  There are basically two ends of the extreme in dealing with pain: one end is to try to be tough and completely ignore it, and the other end is to be terrified of it and let it dictate what you do and don’t do.

When I was a runner in high school, I was far too influenced by the people around me who placed an emphasis on “no pain, no gain.”  (There were a lot of things wrong with the running culture at my high school—a subject for another day).  The mindset that it was good to block out pain and keep going eventually led me to develop compartment syndrome, the injury that ended my running career, and left me unable to walk or stand up for prolonged amounts of time until I had surgery a few years later.

After developing this injury, I of course went all the way to the opposite end of the spectrum.  I blamed myself for not listening to my body, and felt as though my injury could have been preventable.  I freaked out every time something hurt, an approach that also ended up being counterproductive.  I mean, it’s good to be careful, but now that I understand that I have issues with central sensitization, I realize that not every pain is worth freaking out over.

There is instead a middle way, where you learn to respect your body’s pain without automatically assuming you are injured.  This means you respect the pain and don’t try to push through it, but you also know not to freak out because you recognize that your nervous system sometimes gives you false alarms.  It’s about being okay with the possibility that maybe you strained something and need to take it easy, while knowing that you probably didn’t.

I will be talking more about other techniques to work with your nervous system in the future, but this metaphor is really the cornerstone to understanding pain. For more information, check out Neil Pearson and his amazing online lectures that I am always trying to get people to watch!

Photo Credits (all from Flickr):

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