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.

***

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.

***

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.

***

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.

***

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.

***

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.

***

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.

***

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!).

***

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!

A Returning

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I have been away.

I have often thought of how to begin this blog again after a long hiatus and then more time would pass and there it stood waiting for me to speak, write, and reach out.

The reason for my silence is the same reason for beginning this blog. Living with chronic illness permeates everything we do. It is the scaffolding of which we build each day. It determines our daily plans, what we take on, and what we leave unfinished. As I dedicated each day to doctor’s appointments, physical therapy, medication changes, and rebuilding my life after a health storm, this unfinished blog provided comfort knowing that it was a place for me to return.

As the months passed, I was forced into long stretches of bed rest, breaking from work, my passions, the world, and my voice. This is the cycle, after all, of the chronically ill. It is a sequence of retreat and victory, of silence and stories, and of mining the telos of one’s spirit.  What incites us to account our narrative to others relegates us to silence in other moments in a life lived with chronic illness.

I have to admit that at first my silence was “put upon” me. I was so engulfed in pain, fatigue, and just getting through one hour after another that I had no desire to communicate about the latest health trial. Yet, resignation turned towards choice, as I again reimagined and redesigned a future. It is a truth we face when dealing with an incurable disease that we must rewrite our future story after it is continually malformed by our bodies.

The poet Carmen Tafolla wrote: “I was the fourth ship. Behind Niña, Pinta, Santa María, Lost at sea while watching a seagull, Following the wind and sunset skies, While the others set their charts.” This post is dedicated to the future, to the reciting of a livable future, and to exploring the why in a life filled with medical chaos.

Illness is an invasion of identity. Since living through surgeries, a nine medication regimen, and too many medical procedures, I have searched for an explanation, a pathway, and a satisfactory answer to why. Why did this happen? Why me? I have done everything from pretending that the illness part of my life is nonexistent to studying the mechanisms and pathologies of the body; nonetheless, illness continues to lead its assault.

To live with a chronic degenerative disease one must constantly engage in meaning-making. Why? It is because illness is unremitting and untrustworthy. A medical crisis can topple all that you have worked towards in a mere blink.

Therefore, we are professionals at reconstruction and rebooting our future.  Often times, it is a future tinted by professional and personal sadness. Professional goals wane under the weight of the body often causing an individual to lose their job or relinquish ambitions. Illness demands a personal reimagining of what family looks like sometimes forcing an individual to move in with a family member who subsumes a caregiver role or surrendering the dream of having a family and experiencing parenthood.

Illness fractures identity and makes us feel less complete because completion is continuously interrupted.  I believe searching for the “why me” is not out of anger, jealousy, or pity but out of the attempt to take all these futures interrupted and find fulfillment in a life that no longer looks like the life originally intended.

Chronic illness mandates that the individual who lives with it coat themselves in an extra layer of depth because it is a permanent state and the human mind has forever raised questions about immutability.

I spent the last year in renovation.  It’s frightening; isn’t it?  There’s a trauma processing that must be completed in order to move forward in life.

When I was first diagnosed with endometriosis and a chronic pain condition due to a spinal injury, I had no idea nor was it explained to me that I was going to have to go through a continual cycle of insecurity. I was oblivious to the fact that I was going to have to live my life in a temperamental space.

It is of my opinion that chronic illness patients do not fit easily into the usual experience of loss because our loss is not consistent.  The future is unpredictable and so our stories are discontinued and resumed and this process repeats infinitely.

Thus we are forced to mourn each time and rebuild our futures anew holding our breath again that the house will not collapse with us inside. Our narratives remain disjointed and so without any desire for it we gain a level of complexity that is difficult to communicate and share with others even those we love the most.

I don’t know if there is a way to rid ourselves of this anarchy that illness brings. What I am still learning is that inside this chaos we must pledge to coming out of the other side of it. We must promise to find our voice again.

I have been away but now I am returning.  Each one of us can say that.

Although it may appear like a small triumph, I am proud of my return and I am proud of yours too.

***

The above post was written by my friend C. over at her blog Para Las Fridas.

 I have re-posted it here with her permission because it is quite honestly one of the most amazing accounts of life with chronic illness I have ever read.  From the moment I first read it, I was struck by the way C. managed to put into words aspects of my own experience that I had been afraid to face, much less articulate to myself.

Like the feeling of having lost time, of living according to a completely different calendar than everyone else.  Of knowing I’ve disappeared from the world, for months and years at a time, while life has marched on unrelentingly for everyone else.

The feeling of resurfacing, of returning, without knowing if it’s an illusion, or for how long I’ll be allowed to stay before disappearing again.

The feeling that I’ve become an expert at remaking my identity: after each disappearance and returning, constructing meaning again as best I can, assembling the pieces that make sense, filling in the gaps in a way I hope no one else notices.

C.’s words give me the courage to come on my blog and tell my own story, when I’m afraid it’s been too long, or no one will be able to relate.

I am not the only one who feels this way; I am not the only one who has disappeared and returned.

***

You can check out the rest of C.’s writing at Para Las Fridas!  It is simply incredible.

I also wrote this post outlining some of posts C.’s site that meant the most to me.

Lastly, you can also see what C.’s up to on Twitter.

Because the world needs you

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For the first time in, oh, slightly over ten years, my health issues are not seriously obscuring my ability to deal with life.

Mostly through learning about the body, and getting stronger, but also adjusting the way I do things, and my expectations… I’ve come so, so far from the places I once was.

I was telling a friend, a week before the election here, that I was beginning to feel my ability to pay attention to politics and the world at large return to me.

For so long, my health problems forced my gaze to become myopic.  Suddenly, it seemed like 95% of my energy and will to live, really, was going towards simply getting through one day to the next.  Putting one foot in front of the other– even walking from one room to another became a huge task.

My mind was clouded by thoughts of pain.  Forget about work, grad school– I couldn’t think straight.  Sometimes I was in so much pain it was all I could do not to scream.  The daily annoyances of trying to do even the most basic of tasks when my body couldn’t function piled up like a brick wall, blocking my attention from anything else.

So I stopped paying attention.  I checked out, and did what I needed to do to overcome the cards I’d been dealt within my own life.

About month ago, I finally felt something finally click into place again.  I guess it was pretty easy, right before the election and all of the emotions it stirred up for everyone, to begin to feel passionate again.  But I felt the old me come back– the me that couldn’t tune it out, didn’t want to tune it out.

And then I opened my eyes again, to find the whole world seems to be on fire.

This post isn’t supposed to be about me.  I want to tell you all of the things I’m thinking, now I’m tuned in again.  But quite frankly, I’m not sure I’m ready to deal with angry Internet commenters on here.

I’m not sure where to start, but I need to do something.

I guess I’ll begin by sharing a few thoughts:

First, I will remind myself about how we all can play a role in helping each other, in creating a better world.  That there are many ways to contribute.

And that there is simply, utterly, no time in judging ourselves for the problems that we do have.

I struggled for a long time with the fact that my health problems were not “that bad.”  That other people had it worse.  Even my former-favorite doctor said the same thing to me once: “I see other people with worse problems, you know.”

For so long, I felt guilty, selfish.  I had all the time in the world to devote to my health.  I had a roof over my head, a family that supported me.  Was it all in my head– was I  making a big deal out of nothing?

Years later, now that I stand on the other side of the abyss, having finally found answers I needed, I can tell you unequivocally that way of thinking is stupid.

Yes, other people have “worse” problems than I had.  But if there’s anything I’ve learned in all of my studies of the body, it’s that sometimes, even if one little thing goes wrong, it can have far-reaching effects.

The problem is there; pretending it isn’t takes away energy that could be going to actually solve it.

And if it is a “small” problem, isn’t that all the more reason we should be taking steps to solve it and get it out of the way?

When I look back, I know that if I had managed to redirect half of the energy I spent judging myself towards doing my own research and getting second and third opinions, I probably would have gotten to the point I’m at now a lot sooner.  The point where I am able to pay attention to the world at large, and hopefully do something to make it a little bit better.

Instead of thinking of a problem as “small,” maybe we should be thinking of it as “more likely to be solvable.”

Life is too short, and too precious, and there is too much time going on, to judge yourself for an experience you didn’t ask for.  It is what it is– take time the time, do you what you need to do to find a solution, because you need to move on.

Because other people have problems worse than you.

Because the world needs you.

A Clearing

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So I’ve been clearing out all the old stuff from my storage unit.  Finding so many reminders of all the plans I once had.

The high-heeled boots I bought senior year of high school, right before the Halloween dance.  My friends and I were all going to go as “sexy cops.”  (I know).

My running “spikes,” as our cross-country team called our specialized lightweight racing shoes.

It’s bittersweet, to look back and remember all of the optimism I had towards my goals– goals I would never reach.  Especially when I can recognize that some of those goals were pretty unhealthy.

Why did I need to wear high-heels?  They were only making things worse, as I was developing compartment syndrome.

Why did I need to run?  I truly loved it… but at the same time, I wasn’t truly listening to my body, and ran it into the ground.

So much pressure, to be thin, to be pretty.

So now I’m clearing out my storage unit, and there are just so many clothes.  So many clothes, in just about every size.

My size 2 clothes– the last clothes I bought before my health issues spun out of control and a medication forced me to gain weight.  At the time I thought it was horrible, but now I can see it was a blessing in a disguise.  It took something overpowering, and dramatic, to truly break me out of that way of thinking.

Chronic pain finally pushed the obsession with being thin out of my head.  There was no room for anything else; there was only survival, from one minute to the next.  I’m not sure if anything else could have done that– not without it taking years.

***

But I’ve held on to my old clothes all this time.  I loved them, because they were my way of telling the world, at 16, that I was an adult.  (An adult that wanted to dress just like Buffy!).

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My outfits, at the time, felt like works of art.  Handbags, sweaters, dresses– everything perfect.  My mom had picked out all of my clothes for me as a kid, and in the cutthroat world of high school girlhood, it took me a while to define my style.

Once I did, my clothes became my way of making a statement.  I discovered that the better I looked, the more power I had in the social world of high school.   If I looked perfect, it was harder for other girls to make fun of me.  My clothes became my armor.

When I gained weight at first (right after high school ended), I held on to all my old things because I thought I’d eventually be a size 2 again.  Then, once I realized I never actually wanted to be a size 2 again, I continued to keep them simply because it felt strange to part with them.

They’d helped me to define myself as an adult.  At one point in time, they’d protected me.

And they’d been waiting for me for so long, like a lost bookend, marking where I could find the life I’d been waiting to come back to when things finally got better.

I wasn’t ready, until now, to let them go.

But I don’t need or want that life anymore.  I no longer feel like I need to wear high heels in order to be a true girl.  I don’t want to put on eyeliner every morning like it’s war paint.

And I don’t need to weigh 115 pounds, or to be able to see the outline of my hip bones perfectly, in order to be attractive.

I just want to be me.