How to find help for Central Sensitization

Hi everyone!

I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him.  He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.

I thought his advice might be useful for many of you, so here’s what I said.

First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.

Basically, this video is so awesome, I cried the first time I watched it.  Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.

In the video, Dr. Sletten explains how central sensitization impacts our body’s ability to process certain types of information.

In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.

On my blog, I have written about this the most in terms of pain.  You can feel a light touch on your skin, and have it be excruciatingly painful.  Your nervous system is magnifying the sensation.

But there are many other types of stimuli and sensations that our nervous systems can experience more intensely.  Noise, in my experience, can be a big one.  If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day.   It’s like I just can’t block it out.

Heat, to me personally, is another one.  I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts.  It’s like… other people can sort of brush it off.  With me, it’s like it heats me up to my very core and I just can’t think clearly.  (Then I start to experience anxiety, which has been TONS of fun!).

So… back to our main topic.

This reader wanted to know if I had any suggestions for how he could look for help.  (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried).  So here is my answer, written for a general audience.

It would be really great if you could find help in one place.

For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida.  This type of a program, ideally, is geared towards helping people with complex pain problems.

If you have the option of attending such a program, I certainly recommend it!  However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper.  (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).

So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).

What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing.  Here are some examples, for symptoms that are common in people with CS:

Musculoskeletal Pain

The person who helped me the most with my chronic pain was actually a PT.  He truly changed my life.  He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.

As a result, I learned to work with my nervous system, not against it.  I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest.  PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).

There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain.  Physiatrists work in the specialty Physical Medicine and Rehabilitation.  Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.

A physiatrist may ask you about your daily life, and how your sleep is.  They may offer you medications such as Lyrica or Cymbalta (see below).  They may also offer different types of injections, such as trigger point injections, to help with muscle tightness.  In general, they can help you think of solutions you may not have thought of.

Other, non-musculoskeletal symptoms

There are definitely other symptoms and conditions that can be caused by central sensitization.  Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.

Digestive System

One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.

If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.

It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.

If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions.  There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers.  Stress, of course, is a bigger trigger and it’s important to learn how it affects you.  But keep in mind that it is not the only factor, which is why you should investigate all of your options.

Bladder

Another sensation that can be intensified is the sensation that your bladder is full.  This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.

However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.

So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.

Headaches/Fatigue/Dizziness

These are also some common symptoms of CS/fibromyalgia.  However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.

Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.

What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.

Each specialist may use slightly different terminology, or explain it to you in a different way.  A physiatrist will be talking to about pain.  A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.

But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.

So… it isn’t really possible to get help for all of your symptoms from one person.  Because you need to get the information from a specialist.  

There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc.  You have to go to someone with specialized knowledge, for each of these different types of symptoms.

So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.

You will need this person on board to direct your care, write referrals, etc.

I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.

The woman who was my doctor for over 10 years didn’t really believe fibromyalgia was a real condition, so needless to say, she didn’t treat me for it.

Fortunately, that never stopped me from seeing all the specialists I needed to.  It’s not like my doctor was going to say no, and refuse to write me a referral if I said I was having a problem.

However, I am currently in the process of seeking out a new doctor, because our knowledge base is changing all the time.  And because, of course, I’d prefer to have a doctor who actually believes me!

But I know what it’s like to struggle for answers, and not know where to go for help.  

I wrote this post for you, if you’re in the same boat.   Hopefully I’ve given you a good idea of how you can work within the framework of the health care system to get help.

For more ideas, you can check out the following post.  It’s actually an old post, but I just went back and re-worked it before I answered this reader.  It has a little more detail on various treatments:

Don’t worry!  You can still get help, even if you can’t find a doctor who treats fibromyalgia!

Okay… that’s all I have to say for now!

Wow… this was a lengthy one!

As always, if you have any questions, you can leave a comment below or email me at sunlightinwinter12@gmail.com.

Thanks!

A successful experiment with acute stress

In my last post I outlined some ideas from Neil Pearson on how to stress our bodies in positive ways, in the hopes of re-shaping the way we process pain.

I continued my experiment at the gym last night, and I think I stumbled upon the beginnings of what something like that would feel like.

Normally, when I go to the gym, I’m pretty much there to use the pool.  It’s the one form of exercise I never have to “pay for” in any way afterwards, in terms of pain or stressing out my SI joints.  I usually just do my warm-up and cool-down in the pool as well.

So usually, I don’t hang around–  I’m just in and out.  I head straight for the pool and then make an immediate beeline to shower and leave because, well, I’m freezing.  It’s fun, but it’s also kind of rushed.  Some days I feel like kind of a robot.

With the lessons from Neil Pearson’s post in mind, I decided to switch things up a little bit.

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Last night, instead of heading straight to the pool, I first stopped by one of the empty dance studios. I had it all to myself– a big room with a smooth, polished wooden floor and one wall that was all one big mirror.

I had my headphones on, listening to a playlist of music I really liked.  And I picked up one of the yoga balls, and just started dribbling it back and forth, to the beat of the music, like it was a basketball.

Now, if you think about this in terms of exercise, it’s not particularly hard.  It doesn’t require a ton of strength, and I wouldn’t technically call it cardio.

But, if you think about it in terms of the nervous system, it actually was a bit challenging.

I don’t play basketball.  I don’t think I’ve tried to dribble a ball in years.  It’s awkward to try to dribble a giant yoga ball… but it’s kind of fun.

However, it does require quite a bit of coordination, especially as some of the songs on my playlist had pretty different beats from each other.  With each new song, I had to completely switch up my rhythm.

I ended up getting really into it, dribbling and jamming out to my tunes for about 45 minutes.  And I think I managed to reach exactly the kind of state of “acute stress” Neil was describing in his post.

It was a difficult new activity for me, but it was fun.  It was challenging, but in a controlled way.  I felt as though I was pushing the limits of my nervous system, in terms of coordinating movement patterns that were unfamiliar to me, while at the same time limiting the overall stress to my system.  (In fact, I think I probably was reducing my overall stress at that point– it was the end of a good day, I had all the time in the world, and I really love my music).

I think this is the kind of activity that, when performed regularly, could have a positive impact on reshaping the way the nervous system regulates pain signals.  It’s “distracting,” in a healthy and fun way.

Obviously these would be topics for further research, but I think two additional components of what I did, which add to its helpfulness, are

  1. That I found the activity enjoyable, and
  2. That I was listening to music, which on its own can also reduce our perception of pain

This is what I find so fascinating about Neil’s approach to chronic pain treatment— an activity can be therapeutic not just because it makes us stronger, or increases our endurance, but because of its impact on the nervous system.

It’s okay to treat pain and the nervous system as your top priority, not just as a side effect or the means to an end of another exercise program.

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I find the concept of treating nervous system directly to be so fascinating, and I hope you do too!  If you want to know more, I would definitely suggest checking out more of Neil Pearson’s work.  And, as always, let me know if you have any questions or comments!

 

 

 

 

 

The core message of pain neurophysiology education

In the traditional model of physical therapy, the physical therapist prescribes stretches and exercises for the patient in order to improve function in one part of his or her body.

For example, if you have back pain, your PT will probably give you strengthening exercises to build up the muscles in your back and your core.  If you have a knee injury, she’ll  probably give you exercises to strengthen the muscles around the knee.  This is why when most of us picture physical therapy, we imagine a patient grunting and sweating in a gym while the therapist looks on.

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Pain neurophysiology education, however, draws from a different treatment model.  This model is not based on the idea that the patient’s pain is coming an injury in one specific part of the body.  Instead, it targets the sensitized nervous system directly as a source of pain.

The best way I can try to describe this is with graphs.  The first graph below shows the way most people imagine pain to work.  It also shows what most physical therapists are imagining when they prescribe stretches and exercises to improve a patient’s function:

acute pain graph

You can see how, as the intensity of the injury diminishes (represented by the black line) the intensity of the pain diminishes as well (represented by the red line).  This matches our experience of pain in most minor situations: getting a tooth drilled, pulling out a splinter.  When the stimulus goes away, the pain goes away.

However, in situations involving chronic pain (generally defined as a painful experience that lasts for at least two to three months) the pain response works differently.  Prolonged exposure to a painful stimulus actually produces changes in how a person’s nervous system works.  It’s as if it sets off a feedback loop in which pain signals continue to be produced independently of the level of injury.  For this reason, pain persists even after the initial injury has healed:

chronic pain graph 2

This second graph is an accurate representation of the state I was in when I was first introduced to pain neurophysiology education by my physical therapist Tim.  I had a very high level of pain, but it was not correlated with a high level of injury in my body.  This is why I hadn’t seen much improvement with any of my past physical therapists– my pain was coming from my nervous system, not from a specific injury in my body.

“If pain is the patient’s primary symptom, then pain relief should be the primary goal of treatment.”

I once read something along those lines in a blog comment section, and it really stuck with me.

Most physical therapy programs are designed to improve function of a certain part of the body.  But when your pain isn’t coming from a problem with a certain part of your body, you can stretch and strengthen until the cows come home.  It still won’t change your level of pain.

This is why none of the physical therapists I had seen before had been able to help me.  They were all stuck on the idea that I needed to strengthen my back; strengthen my abs; strengthen everything.  Of course, in some ways they were right.  I wasn’t in the greatest shape.

But what Tim was able to identify is that there was a common denominator behind all of the pain I was experiencing in different parts of my body.  Rather than looking at each one as unrelated, he recognized them as the symptoms of an overactive nervous system, or, as he taught me, body alarm system.

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The goal of PNE is basically to help the patient’s body “remember” what an accurate pain response is supposed to be.  There are a few ways to accomplish this, and I will be discussing them in upcoming posts.  But the general goal of these various techniques is to help the patient’s nervous system get back in touch with with the reality of what’s happening in his or her body.

This graph shows the general goal of treatment:

input to nervous systemThe blue arrows represent the input you want to give to your nervous system.  You’re basically saying to it, “Hey.  Hey you.  You are freaking out for no reason.  This is reality, and it’s over there.”

The role of the physical therapist is basically to help the patient’s nervous system realize it doesn’t need to be on high alert all the time, and to slowly help it calm down.  The idea is that as time goes on, the discrepancy between what the person’s nervous system feels and the actual level of dysfunction in his or her body will slowly shrink.

Now, to be honest, I’m not sure you will ever be able to fully reverse the process of central sensitization.  It’s probably possible, but it hasn’t happened yet for me.  That’s why I didn’t draw the red line going all the way back down to the bottom.  An overactive pain response will always probably be somewhat of a factor for me, but it is a million times better for me now than it used to be.  I’d much rather have the red line close to zero than soaring way up high, totally out of touch with my physical reality.

P.S. I adapted this post from Part 3 of my series on my own patient experience with pain neurophysiology education, entitled “How a physical therapist helped me through my lowest point.”  I’m experimenting with different ways to present information, to find out what works best for people.  Definitely check out that series if you’d like to know more!  I would love to hear any comments or questions you might have.

Photo Credits:

  • Strength training equipment pic: colonnade
  • Balance training equipment pic: kbrookes

There is reason to hope.

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I saw a comment on Twitter today which really broke my heart, so I wanted to write this and make it clear:

If you are experiencing pain hypersensitivity (through central sensitization), there is every reason to hope.

If your nervous system has changed one way, it is possible to change it back.

It won’t be easy, and the way forward won’t always be obvious.  But you can do it.

If you are experiencing central sensitization (as the result of an injury, a trauma, or other extreme physical or emotional experience) you have become more sensitive to pain than you used to be.  Your body is using pain as a way to protect you, but it is treating you like you are made of glass.  It is trying to protect you from everything.

Scientists are still researching the myriad of ways in which this happens.  So far, they have identified multiple different mechanisms within the nervous system which can cause this extreme response to pain.

However, the good news is that we don’t need to know everything, yet, about how this process occurs to start treating it.  (Although our treatments will only get better in the future, with more knowledge).

But you can start, right now, by learning what your body is capable of, and identifying the things your nervous system is warning you about that aren’t actually dangerous.

***

For me, it took a really smart and capable physical therapist who had studied with Neil Pearson.   I expect that you will need a guide as well– someone who you trust, who can walk you through and help identify the ways it is safe for you to try to push through the pain.

Your best bet will be a physical therapist who has advanced knowledge of recent pain science.  (A PT with this knowledge might not easy to find, at first, but luckily it’s becoming easier and easier.  If you email me at sunlightinwinter12@hotmail.com, I can help you get started).

What you need is someone you trust, who you will believe when they tell you your body is capable of more.

Someone who is able to think flexibly and come up with more than one way to do an exercise, if you tell them the first way they gave you doesn’t seem to work.

Someone who will understand that it’s not only about what they learned about the body in school…  it’s also about you, your nervous system, and your experience as a patient.  Your nervous system has to be convinced that your body is safe, before it’s going to stop making things hurt.

Changing your beliefs about pain can have a direct impact on the pain you ultimately experience.  When you truly learn and understand that your body is giving you pain in order to protect you, it stops being so threatening.  This is known as changing your pain from the top down— from the brain to the body.

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Of course– it’s equally important to keep working on your pain from the bottom up– from your body to the brain.   

If you have chronic pain, or have suffered from some type of injury, your muscles are probably tightened into protective spasms.  This, in turn, will make them weak, if it goes on for long enough.

So you have to work on the pain from both angles.  You need to calm your nervous system down, and help it understand that not everything is dangerous.  But you also need to give your body what it needs, and do everything that you can to help it function optimally.

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Doing both of these things is a balancing act.  Getting back in to shape is not about pushing through the pain.  It is not a “no pain, no gain” mentality.

Instead, it is about being mindful.  Being careful.  (And again, ideally, having a trusted coach by your side).

To respect your nervous system, and to accept your body where it is currently at.  Not trying to do too much, too soon, but instead starting where you can.  If you can only walk for 5 minutes, walk for 5 minutes.  If you need to ice your injured knee before you work out, ice your injured knee.

It’s about bringing all of these different things together, and figuring out what works for you.

 

What is pain neurophysiology education?

In a nutshell, pain neurophysiology education is the type of treatment for chronic pain that changed my life and inspired me to become a physical therapist.

I’ve mentioned it in passing on this blog, but I decided it’s high time I give the topic its own post.

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In my series “How a physical therapist helped me through my lowest point,” you can read the story of how my life had ground to a halt because of chronic pain, until I finally met Tim, a physical therapist who had studied with Neil Pearson.

Tim treated my pain in an entirely different manner than all the physical therapists and doctors I’d seen previously.

He explained to me that after all my body had been through– running 45 miles a week, only to develop compartment syndrome and barely be able to stand, to live like that for two years, and then to undergo surgery– my nervous system had gotten confused.

All the pain doctors hadn’t been able to explain– it wasn’t because I was crazy.

In fact, the reason I was feeling all this pain was because my body was trying to protect me.

My nervous system had decided the world was a dangerous place.  It was tired of me taking chances– it didn’t want to have to deal with another injury.  So it was making everything hurt.  It was making me feel as though I were made of glass.

But I wasn’t made of glass, Tim assured me.  My body was strong; it was capable.  And this attempt on the part of my nervous system to protect me had over-served its purpose.

Tim explained that the surgery I’d had for compartment syndrome had been successful, and despite how much my legs might hurt at times, I wasn’t going to be able to bring it back just by walking down the street.

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The pain neurophysiology approach worked when nothing else had, because it gave me a real explanation for the pain that actually made sense.

Before that, all the physical therapists I’d seen (and I’d seen a lot) had taken one of two approaches:

A) You have some underlying soft tissue problem or scar tissue or whatnot that we have to fix with a special treatment, or

B) I can’t really find anything wrong with you, so the pain must be in your head and you should probably see a psychologist.

Neither of these approaches ever made a difference for me.  The “special treatments” for the hidden, subtle issues in approach A never fixed anything or reduced my pain (except temporarily, because I felt like I was doing something).  And approach B never fixed anything, because ultimately these problems were not reflective of my overall mental health.

Instead, I learned, my pain was the result of a specific phenomenon that occurs within the nervous system: central sensitization.  Basically, the underlying principle here is that the more practice the nervous system gets at sending signals, the better it will get at sending those signals.  And that is true of pain signals, along with everything else.

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Tim didn’t really use the words “pain neurophysiology education” while I was seeing him for treatment.  Instead, I first found this phrase while I was looking through Neil Pearson‘s website, as Tim had urged me to do.

From there, I discovered the names of other physical therapists and researchers who had contributed to developing pain neurophysiology education, or PNE as I’ll be referring to it in the future.

Names such as David Butler of the Neuro Orthopedic Institute, and Lorimer Moseley of the research group Body in Mind.

From there I have discovered so many interesting resources, and articles, and interesting people doing work on the subject.

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For 2017, I’m trying to get back to my roots on this blog.  I started blogging to educate people on the science of chronic pain, and I really enjoy doing that.  So I’m planning to start channeling more energy towards that again.

So I’m going to start fleshing out this section of the blog again.  I’ll be providing a lot more explanations, linking to great resources, and also quoting excerpts from articles that I think explain things really well.

And I’ll be telling my own story, when it comes to my struggle to understand my body, and learning to deal with central sensitization.

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For now, I want to leave you with two posts I wrote on some of the main concepts I learned through my experience with PNE:

Understanding pain as your body’s alarm system

Understanding pain as an overprotective friend

These posts tie in a couple of anecdotes from Neil Pearson and Lorimer Moseley that I found particularly helpful.  (Let me say, once again, that I am so, so grateful for their work!).

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I hope you find this post, and the related articles I linked to, to be helpful!  I’m really excited about the things I plan to write about in the future, and I hope you stay tuned!