How I developed central sensitization: Part 2

Continued from Part 1

My doctor said I had what was called “glass back” syndrome.  Every muscle, from my neck to my lower back, was locked in spasm.  Even the smallest movement could set off a domino effect, each muscle triggering the next, until my entire back would feel like a blaze of pain.  I was so sensitive to movement, it’s as if I was made of glass.

The only time of day when things didn’t hurt was when I first woke up in the morning.  For those few seconds before I moved, I would feel okay.  Then, when I turned to roll out of bed, bam!  The blaze of pain would return.

I learned to keep my bottle of painkillers next to me when I slept.  That way, when I woke up, I didn’t have to reach very far for a pill.  I would gingerly edge my fingers along the mattress, grab the bottle and open it.

That would be it– the only motion I’d perform.  Reach over, take out a pill, put it in my mouth, swallow.  And then wait until I felt it set in; everything would become dull, and a little less horrible.  I was a little farther inside myself, but at least I was also farther away from the pain.

Tramadol, Tylenol, Advil, and a muscle relaxer.  And Bengay cream.  And heating pad at night.  These were all the things I needed to make it through– if you can call it that.

***

Part of what made it worse is that I was treating my back pain like it was a running injury.  That was the only type of injury I’d had before, and with all of those injuries, the important thing was to rest.

I later learned that with a back issue such as this (it wouldn’t be accurate to call it an injury) it’s actually really important to move, and strengthen the back muscles.  To an extent, you have to keep moving in spite of the pain, because if your muscles get weak, things only get worse.

But I was young, and I didn’t know.  In fact, I was tough; I was an athlete.  I’d never had “injuries” before that hadn’t been caused by a serious amount of force travelling through my body, my feet pounding into the pavement at sub-6-minute mile pace.

I was not at all familiar with this kind of pain– the kind of pain that kept spiraling beyond my grasp, beyond my wildest efforts to control it.  The kind of pain that seemed to be caused by almost nothing.

So, I thought, I needed to rest.  That’s what I’d done for all my previous injuries.  I didn’t want to strain anything, or break anything.  With this amount of pain, rest.

***

In the midst of this, I was due to start at the new school I had transferred to; a small liberal arts college in Western Massachusetts.  I contemplated not going, but ultimately I decided to take the plunge. I didn’t want to miss out on yet another experience.

Luckily, I could physically make it to class– the campus was walkable, and my legs had healed completely from the surgery.

But a lot of the time, I couldn’t concentrate.  I remember being in class knowing I was feeling the exact moment when my last dose of tramadol wore off, counting down the minutes until I could go back to my dorm room and take another.

And then, once I was safely back in my room, I’d briefly fall asleep.  Not from the tramadol (my body got used to it after a while) but from the sheer exhaustion of trying to stay awake through something so excruciating.  It was as though my conscious mind needed a break from experiencing this much pain, and sleep was the only way out.  So I’d fall asleep, and leave reality behind for a little while.

***

The way out, as I learned in physical therapy, was to get out of bed and keep moving as much as possible.  I started going for walks– long walks, which I might have once thought impossible before my leg surgery.  This, as my PT explained, helped to increase blood flow, flushing out some of the pain-producing chemicals in muscles, and also “acting like a giant heating pack from the inside,” helping the muscle to relax.

Additionally, I started doing specific exercises to strengthen my back muscles.

And you know what else?  I took my painkillers.

***

Contrary to what you might expect, my doctor at school totally understood what I was going through and encouraged me to actually take the full amount of tramadol she had prescribed (up to 6 pills a day), if it would help me move more.

From her, I had my first real experience with understanding pain science.  She explained that, with “glass back syndrome,” the pain sort of became its own cycle.  As the muscles would spasm and create pain, this would actually cause all of the other nearby muscles to tighten up as well, to protect the area.

The painkillers, it turned out, were actually helpful in reducing those pain signals telling the muscles to spasm.  When I took them, I was able to go for walks, and do my exercises, and get stronger.

(This experience is one reason why I will always believe in the power of prescription pain medication to help chronic pain patients.  Without it, I truly believe my recovery would have taken much longer).

***

Eventually, my back got stronger, and the all-encompassing muscle spasms finally stopped.  I found I no longer needed the tramadol, and I stopped that too.

However, though my “glass back syndrome” eventually subsided, the pain would never fully go away.

To be continued in Part 3!

Introducing the Sunlight in Winter Youtube Channel

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Ever have one of those days where you want to keep working/thinking/being productive, but your body just wants you to lie down with a heating pad?

That, unfortunately, has been happening to me quite a bit recently.   I’ve been wanting to sit at my computer and either study or work on my blog, but my neck and shoulders have just not been on board.

Trying to look on the bright side, I remembered that there were a ton of pain science-related videos on Youtube that I’ve been meaning to check out.  So I decided to use my “lying-down” time to catch up.  I started saving my favorites to playlists, so that I could just lie down and listen, and not have to worry about getting up and selecting the next video.

And then it occurred to me—maybe other people would enjoy these playlists too.   It’s a lot more relaxing to just start a playlist and let it run, instead of having to get up and go to the computer every time you want to start a new video.   It also makes taking a break a lot less frustrating, since you can keep your mind going with something productive.

So, check out my channel!  So far I’ve broken things down into a few separate playlists, some based on topic and some by speaker.  I’ll be adding to it as time goes by.  Let me know if you have any comments or recommendations for videos I should add.

To go directly to some of my favorite videos:

Lorimer Moseley: Why things hurt

Elliot Krane: The mystery of chronic pain

The evidence for physical therapy for chronic pain

Hope you enjoy!

Photo credit: Dan Barbus

Pain Neurotags– Human AntiGravity Suit

A pain neurotag has to do with our brains’ representations of pain.  Individual people process pain differently, and many different factors affect how our brains process and store memories of painful events.

I thought this was a great post from Human AntiGravity Suit on how two professional athletes might experience and store memories of injuries differently.  The injury that appears more “serious” to the outside world might not be the injury that is the more devastating in the long run.

Someday there could be a test for fibromyalgia

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One of the reasons I am so optimistic about the future is that someday I believe we will have a way for doctors to see just how much pain a person is in.  It won’t be a matter of taking the patient’s word for it (though that should be enough) or wondering whether or not a patient is faking it.  Instead, there will objective results right on the screen.

What I am talking about is functional magnetic resonance imaging, or fMRI.  An fMRI is slightly different from what most people think of as an MRI.

A regular MRI takes “snapshots” of what is going on in the body.  Your doctor might send you for an MRI of your spine if you are suffering from back pain.  Sometimes women have breast MRI’s if something odd shows up on a mammogram.  An MRI shows you what is happening in the body at a particular moment in time.

An fMRI, on the other hand, is a way of looking at blood flow in the brain.  It shows which parts of the brain are more active than others.  Because the more active parts of the brain require more oxygen, an fMRI will show increased blood flow to those areas.

Researchers working with fMRI have been able to identify distinct patterns of brain activity in the brains of chronic pain sufferers.  These patterns of activity set chronic pain sufferers apart from normal, healthy individuals.  These distinct patterns are unique to people with chronic pain and are sometimes referred to as a “pain phenotype.”

I have heard of several research groups in the US who are investigating whether or not pain sufferers can learn to “rewire” their brains using the information given in an fMRI.  This is done by using a form of biofeedback.   There is evidence to suggest this can be done.   (If you would like to know more about biofeedback, check out these great explanations by Christopher DeCharms and Dr. Sean Mackey).

I’ll be writing more on the idea of biofeedback in a later post.  For now, the fact that an fMRI can even show pain activity is exciting to me.  In a world where chronic pain/fibromyalgia patients are routinely pushed aside, dismissed, and belittled, fMRI offers us all hope.

People who really understand pain know that it can be a disease in its own right.   Once a person’s nervous system gets wound-up enough (yes, “wind-up” is actually one of the scientific terms that refers to this process), the pain can be out of control, and no longer in proportion to whatever physical injury might have originated it.

With brain imaging, this phenomenon will become more clear.  Perhaps someday, pictures of the “pain phenotype” will  appear in everyone’s medical school textbooks.  A sympathetic doctor won’t be something we have to travel far and wide for, like the pot of gold at the end of the rainbow.  Pain will be understood as a disease in its own right, and perhaps then adequate pain medication can actually be given.

Or… who knows.  Maybe pain patients won’t need as much medication because instead, we will be able to learn to control the pain-processing parts of our brains using biofeedback.

Either way, I am optimistic!

For more information, you can check out a new page in my Resources section called “Brain Imaging for Chronic Pain.”

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**Ok, so this photo is actually a picture of someone’s heart, but it looks a lot like the fMRI’s I’ve seen in documentaries.  I know there are better pictures out there, but I get nervous about that whole copyright infringement thing, so for now I’m sticking to what I can find in Creative Commons.  Thank you to Glyn Nelson.**

Above rainbow picture courtesy of SugarBear1956 on Flickr

The Nervous System and Chronic Pain

Sometimes, pain can persist even after the original injury or disease that caused it has healed.

There are several different factors that can cause this.  The one that’s played the largest role in my own life involves the concept of neuroplasticity— the idea that the nervous system can change over time, and that in chronic pain sufferers, it can actually become more sensitive to pain.

In this post I”ll be sharing what I’ve learned about neuroplasticity, as well as some of the other potential causes for chronic, persistent pain.

Neuroplasticity, or Practice Makes Perfect

They say practice makes perfect— in scientific terms, this is known as neuroplasticity, or the idea that the nervous system can be molded and changed by different experiences.  The more chances you give your nervous system to perform a task, the better it becomes at it.  In most cases this is a good thing—neuroplasticity allows you to learn how to walk, how to ride a bike, how to play the piano.  This ability of our nervous systems to learn new information and adapt to different life circumstances has been a fundamental part of our evolutionary history.

But sometimes this tendency of our nervous systems to become better at things with practice is a bad thing.  If you give your nervous system enough “practice” experiencing pain, it will become better and better at it.  The pathways between your nerves and your brain involved in sensing pain will become more and more developed.  It’s as though you’ve turned up the volume dial in your head, and now you hear everything, even the quiet parts, at an incredibly high volume.  For some people, even a tap on the shoulder or the feeling of clothing on their skin can be excruciating.

There are a few scientific terms to describe this phenomenon, but the one that seems to be the most widely used is central sensitization.

Central sensitization

“Central” refers to the central nervous system (the brain and spinal cord) and “sensitization” means, well, the process of becoming more sensitive.

People who go through an extremely painful physical experience may find later that they suffer from central sensitization.  It could be a car accident, a severe injury, or even surgery.  Anything that is traumatic to the body can begin this snowball effect in which the constant pain signals traveling through your nervous system cause it to be more and more sensitive to them.  The exact reasons why it happens to one person versus another are not known.

I developed my chronic pain disorder a few months after my surgery for compartment syndrome in 2004.  It’s possible that the surgery itself triggered the changes in my nervous system– as one physical therapist explained it to me, being cut open is very traumatic for the body, whether or not you are awake to experience it. The other possibility is that it was triggered when I threw my back out a few months later.  That was the point at which the chronic pain began and never really left me.  I’ll never really know for sure which it was, because many people have told me that it can take some time for a chronic pain problem to manifest itself even after the precipitating event.  In all likelihood, it was a combination of the two things.

Pain Alarm System

Neil Pearson and other pain scientists describe pain as the body’s “alarm system.” This alarm system allows your body to communicate with you either that physical damage to your tissues has already occurred, or that physical damage might occur.  Pain is a protective mechanism; it alerts you when you need to take action, or to stop doing something that could damage your body.

In people with chronic pain, the pain alarm system has gone into overdrive, and it has begun to warn you about things that, in reality, do not really pose a danger to your body.  Of course, you have no way of knowing that– the changes to your nervous system occur completely outside of your conscious control, and all of the pain you feel is real.  Just because sometimes pain does not correspond to actual physical injury does not mean it feels any different to the brain.  All pain is 100% real, whether it stems from any sort of damage to your body, or from sensitization of the nervous system.  This is when you end up like me, going to the doctor’s office all the time only to be told they have no idea what’s wrong with you.

I find a lot of comfort in remembering that pain is an alarm system.  Our bodies developed the ability to experience pain not to torture us (though it definitely feels like it sometimes) but to help protect us.  Pain is what tells you to take your hand off of a hot burner, and not to walk on a broken leg.  It’s what tells you not to take that stretch so far that you tear any muscle fibers, and not to try to lift that heavy weight again.

Neil Pearson likens an overactive pain alarm system to an overprotective friend: your friend is worried about you, and really wants you to stop doing whatever he or she thinks you’re doing that is so dangerous.  His advice on how to deal with this “overprotective friend” has helped me more than anything else on this chronic pain journey.

Myofascial Pain Syndrome

Here is where things get a bit complicated.  Although myofascial pain syndrome and central sensitization syndrome are technically not the same thing, I am not convinced it’s fair to think of them as completely separate disorders. I have symptoms of both, as I think most chronic pain sufferers do.

I generally defer to the Mayo Clinic website when I want a definitive answer on such matters.  According to them, “In myofascial pain syndrome, pressure on sensitive points in your muscles (trigger points) causes pain in seemingly unrelated parts of your body. This is called referred pain.”

A diagnosis of myofascial pain syndrome is generally based on whether or not the patient has these painful trigger points.  The Mayo Clinic says that this condition “…typically occurs after a muscle has been contracted repetitively. This can be caused by repetitive motions used in jobs or hobbies or by stress-related muscle tension.”

I don’t know about you, but to me that last part about muscle knots forming due to “stress-related muscle tension” starts to sound similar to what someone who has gone through central sensitization would experience.  At least, it does when you consider that one of the theories for the cause of trigger points is that that they form near a nerve that is constantly freaking out due to chronic pain.  The idea is that when you have pain signals flooding your nervous system day in and day out, your body reacts as though its been damaged.  Your muscles spasm up as a protective mechanism, to keep you from using the “damaged” part of your body until it heals.  This is why I find it hard to view myofascial pain syndrome as entirely separate from the idea of central sensitization.

Other Potential Factors in Chronic Pain:

Sleep Deprivation

Studies have shown that when you take generally healthy people and deprive them of sleep, they begin to exhibit the same symptoms reported by people with fibromyalgia (read this and this).  This is not to say that sleep-deprivation has been found to trigger chronic pain all on its own, but its certainly interesting, especially for someone like me who has had life-long difficulty sleeping.  Personally, I think it’s very possible that my perpetual difficulties sleeping contributed to my developing a problem with chronic pain.

Depression

Numerous studies have demonstrated a relationship between depression and chronic pain.  I’m sure I will surprise no one when I say that chronic pain patients have been shown to suffer from depression at higher rates than the general population.

On the flip side, depression has been shown to cause physical symptoms such as back pain or headache.

What came first– the pain or the depression?– can seem like somewhat of a chicken vs. the egg question.  If you suspect depression might be playing a role in your pain, I would definitely seek professional help and investigate further.

However, I personally had the opposite experience, where I came to feel that many of the doctors I saw were too quick to attribute my pain to depression, even though I insisted repeatedly, and with absolute certainty, that I wasn’t depressed.  If you are being treated by someone who gives you the impression that they think your pain is being caused entirely by depression, and you disagree, I would definitely look for a second opinion.

Anti-depressants have been shown to help with chronic pain, but that doesn’t necessarily mean the pain was caused by depression.  It does mean that depression and chronic pain are likely to share similar physical pathways in the brain, however.  Studies have demonstrated that much lower doses of anti-depressants have been found to be helpful for chronic pain than are normally needed for depression.

Maybe Your Doctors Have Missed Something

Yes: in my book, this counts as an official cause of chronic pain.  If your doctor doesn’t understand why you are in pain, he or she will probably tell you that you have an increased sensitivity to pain.  This is not always a safe assumption.  People don’t always undergo central sensitization after an injury (I certainly had my share of running injuries in high school, but up until I developed compartment syndrome, I always recovered from these and was eventually pain-free).

Doctors miss things all the time.  Perhaps you have scar tissue in your knee that’s getting in the way from an old injury or surgery.   Perhaps one of your legs is almost imperceptibly longer than the other and you need orthotics and a lift in one shoe.  Don’t let a diagnosis of chronic pain make you stop looking for other answers.  You may indeed have a problem with central sensitization, but you might find there are very real orthopedic interventions you can make to cut down on your level of pain.  At the very least, don’t give up looking for other answers before you have an X-ray or MRI of the afflicted part of your body.