Central Sensitization, Chronic Pain, Nervous System, Pain Science

Pain is like Memory: Dr. Jay Joshi on Central Sensitization

Okay.  I’ve really been looking forward to publishing this post.

Here, we’re revisiting the same great talk by pain physician Dr. Jay Joshi.  In my last post, I outlined what Dr. Joshi says are the four main categories of pain.

Central sensitization is the type that is, unfortunately, the least understood.  And it’s also the type that’s had the biggest impact on my life to date.

What is it?

Central sensitization is a process through which the central nervous system learns to become more sensitive to, or amplify, pain signals.

I struggled with it for years and thought I was crazy, because I had pain that came and went throughout my own body that most of the doctors and physical therapists I saw couldn’t explain.

Central sensitization is a form of memory.

Generally, we think of central sensitization as a sort of a disorder, because of course, it causes so much pain and suffering.

However, as I’ve touched upon in previous posts, central sensitization actually has its roots in some of the same neural mechanisms that allow us to learn new things and store memories.  We “learn” from pain just as we learn from anything else, and our nervous systems can be changed by it.

As Dr. Joshi says:

“Central sensitization is what happens when the brain is exposed to certain experiences or certain memories.  It’s life… it’s being a human.

When you have a certain memory that forms it, becomes part of who you are… it becomes part of your experience.  And your behavior changes as a result of that.

This is not something that happens randomly…  This is something that happens to the neurophysiology of your brain.  It forms memories.  Those circuits get hardwired on your little ‘hard drive’ that’s known as a brain.  The same thing that happens with pain, when you have a chronic pain stimulus.”

The process of central sensitization is not separate from our brain’s other functions– rather, it belongs to them.

I found this happened to me so often, over the years, before I even knew what central sensitization was.

I’d have a painful experience– the first one was when I threw my back out at age 21— and it was like my nervous system was determined not to let me forget about it afterwards.

According to Dr. Joshi, this is exactly how central sensitization occurs, after a painful or traumatic event:

“You have a painful experience, and usually one of the first things that happens is your brain says ‘hey don’t do that again.'”

It’s trying to protect you from doing the same thing that might have caused you to become injured in the first place.

But what happens when that signal doesn’t stop? 

In cases like mine, this process can go on indefinitely.  Your brain keeps trying to protect you, telling you not to repeat certain activities, long past what’s actually necessary or conducive to your well-being.

This is called the wind-up phenomenon— when the brain’s protective mode stays on, and never gets the signal to turn “off” like it should.  Instead, it just keeps repeating the message of “don’t do that again”– even if it’s something that, technically, should be safe for you to do.

Once this process, the pain can sort of build on itself, like a snowball effect.  And you can remain in pain, long after the original injury that might have set all this off as healed.

Does all chronic pain cause central sensitization?

Dr. Joshi explains that chronic pain is likely to lead to some degree of central sensitization.  (This is significantly higher than other estimates I’ve heard, such as Dr. Elliot Krane’s figure of 10%).

However, I think Dr. Joshi’s explanation makes a lot of sense.  After all, when you experience chronic pain, you’re basically bombarding your nervous system with opportunities to practice sending pain signals.  Why wouldn’t it get better at doing so, the same way you can get better at playing the piano or riding a bike?

Central sensitization is still a part of my life.

I don’t expect to ever be able to totally reverse the process that first began, for me, at age 21.

However, I was able to make a lot of positive changes and gain back a lot of control over my body through pain neurophysiology education, which I write about a lot on this blog.  (Basically, it involves teaching your nervous system what it’s like to feel safe again, so that it can turn the “volume” back down on the pain).

There’s a lot more to say!

Dr. Joshi has some great thoughts on how to improve the medical profession’s understanding of central sensitization, as well as ketamine infusions– a potentially powerful treatment for patients with central sensitization.

I’ll be sharing more on this coming up– hope you liked this post!

My Story

Newfound possibility

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I’ve been away from my blog for the past month, and I have so much to tell you all. I took what was supposed to be a five-day trip to a wedding in California, and turned it into an amazing, impromptu two and a half week stay.

To be honest, I was really scared to take this trip. Since I first developed health issues at age 19, I have really not traveled very much at all. It’s only been in the past four years or so that I’ve started to open myself back up to small weekend trips around New England.

But California? I had to go… one of my oldest friends was getting married.

So I went. But I really didn’t want to.

I hadn’t traveled in so long that everything felt rusty. I’d clung to the same routine for so long, hoping my pain and SI joint issues wouldn’t get worse… and now, everything was about to change.

Now that I look back, I can’t believe I was so scared of a five-day trip. It’s not like I was traveling to the middle of nowhere. I was going to Napa Valley and San Francisco… two places that are hardly without amenities. I had just gotten so used to the idea that travel was not for me, that I felt as though I was traveling to a foreign country.

So I went.. and everything turned out fine. Better than fine. The wedding was in Napa, and then after that I spent two nights at my friend Karen’s apartment in San Francisco. We were having such an amazing time catching up, Karen finally getting to show me the sights and sounds of the city she’d been telling me about for ten years. After one day, we decided I should switch my plan ticket and stay. It’s something that felt so out of character for me… but I did it.

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It ended up being a great adventure, and in some ways… I feel as though I re-joined the modern world. (It feels weird to tell you all this, but it’s the truth). My health issues had forced me to stay still in one place for so long, that it seemed so much had passed me by.

Now, it was time for bootcamp. I had to remember how to book a plane ticket; how to check a bag and get through security. How to handle a rental car. I got an AirBnb account; I got Uber; I got Lyft. I had to navigate us all throughout Napa Valley for the various wedding events, and then back down to San Francisco.

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I had to put so many of my fears aside, because there simply wasn’t time for them. And I realized that (apart from the extreme amounts of money I spent on the trip) most of my fears turned out to be unfounded.

To be fair, I had some amazing friends to help me. My friend Karen is amazing, and so is my friend Amanda, who flew with me from Boston to be my plus one at the wedding. Part of the reason I asked Amanda to come – other than, of course, wanting her company– is that I was afraid I would need a lot of help physically, dealing with my suitcase and stuff like that.

But it was all okay, and if anything, I realized I really didn’t need Amanda’s help as much as I thought. Now, I actually think I could have made the trip alone (although I obviously still would have wanted to have Amanda come for the company!).

The lesson I’m taking away from this is that sometimes, change can be good. A new experience, particularly one that we fear, can be a great way for us to open ourselves to new possibilities, and to learn things we didn’t even know we didn’t know.

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Now, I’m not suggesting that things are always going to be easy, or that all those of us with health problems have to do is wave our magic wand, think positive, and hop on a plane, guaranteed a great trip.

There’s a lot that has gone into getting me to this point. Learning the right exercises to strengthen my body, and learning the right techniques to help calm my nervous system. My life is opening back up again, but it’s only been because of the time I’ve spent being mindful of how I live, and carry myself, and remembering to work with my body instead of against it.

This is why I feel so powerfully about some of the things I share on my blog– when you have chronic pain or fibromyalgia, it is possible for things to change.

I’m so glad I took this trip, and am so excited to see where my newfound sense of possibility takes me. I hope you will all stay tuned!

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Creative Writing, Inspiration, mindfulness, My Story

Little things

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These days,  I’m all about the little things.

Last Sunday, I went with my friend Romina to her father’s house in Rhode Island.  I would say that we were going to visit, but we were actually short on time, and Romina just needed to drop some things off.

But we ended up having a great time.  I had never gotten to know Rhode Island that well, and didn’t realize how beautiful it was, with all of its waterways and estuaries.  We drove through Providence and the surrounding towns, and I soaked in the beauty of all we passed.

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As I mentioned in my last post, travel wasn’t really a huge part of my life for the past 10+ years.  Since I developed compartment syndrome at 17, there always seemed to be one reason or another why I couldn’t be on my feet for long periods of time.  And what’s the point of travel, if you can’t walk around?  Better to wait and save my money until I could really enjoy it (or so I thought).

However, as I entered my late 20’s, my thinking started to change.  I realized that the perfect day when I’d be able to walk as much as I wanted might never come.  Why was I missing out on things, waiting for everything to be perfect, instead of enjoying what was possible right now?

I know this is going to sound like such a cliche, but it’s cliche for a good reason: I started to focus less on what I couldn’t do, and more on what I could do.

I can’t go on a six-hour walking tour through the rolling hills of San Francisco right now.  But I can tag along with Romina, on what would otherwise be a routine errand for her, and turn it into a really fun afternoon.

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I read an article a few years ago which really had an effect on me.  It was actually an article on how to be good to the environment and minimize your carbon footprint.  It pointed out something that of course is going to sound so obvious now:

If you have one errand to run, try to think of other things you can do on that same route.  Don’t make separate trips and go back and forth, when, with a little bit of planning, you can just make the first trip slightly longer and get more done. 

I know, this sounds so obvious– you probably didn’t need me to tell you.

But for me, as someone who really cares about the environment, it really got me thinking about what else is around me as I go about my daily life.  I started to study Google maps before every trip, wondering what cool scenic thing I might be driving by.   If I have the time– even a few extra minutes– why not try to see something cool?

I started out doing this for environmental reasons (not to mention to save money on gas) but over time, I came to realize that my whole perspective had changed.  Somehow, by getting in the habit of trying to make the most out of every trip, I had started to become more conscious of the unexpected little things around me.

Downtown Providence from Point Street bridge

I mean, this is how we are when we’re on on vacation, right?  We try to see everything; to soak it in.  Everything is new.

But what I have learned, in my study of maps, is that we can have more of a vacation-mindset in our every day life.  It’s a matter of perspective.

You have to take the time to look, consciously.  No one is going to take you by the hand and force you to see the beauty in the world.  You have to remind yourself to keep your eyes open.

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I don’t mean to sound as though I am against travel– not at all.

I just know that before my health problems, I used to think about travel the way I think most people probably do: what is my preferred destination?  What do I want to see more than anything else, and how can I maximize my enjoyment of that destination?

But that way of thinking– let’s call it the “enjoyment-maximization mindset”– is what made it so devastating to me when I couldn’t walk, and made me not want to travel until things could be perfect.

Now, I am in more of what I would call an “appreciation mindset,” where I consciously remind myself to look up and see what is around me.  This is another cliche, but it’s honestly not about the end destination: it’s about the journey.

Just because I’m driving to a doctor’s office down an unsightly highway full of strip malls does not mean that, two miles off the main road, there won’t be a gorgeous scenic overlook or historical park.

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Even if you can’t travel far, or see things on foot, you can still discover new things all the time.  But it does take a conscious effort to break out of old ways of thinking, and decide what matters to you, even if your adventures are not in the same form other people’s would take.

Now, I say yes to so many invitations I would have turned down in the past.  These days, when my friends go camping, I actually go too.  (Car-camping, of course–backpacking would still be too much of a stretch).

In the past, I never would have said yes to camping.  What would be the point?  I would have thought.  I can’t actually go hiking with them during the daytime, so why would I want to go and be by myself all day?

But that was my old way of viewing things: of waiting until I could experience things the same way everyone else does.

Now I go, and I do as much with the group as I can.  We generally go to the White Mountains in New Hampshire, and what I never realized until I got there is that even the car ride can be fun, because it’s so beautiful.  There are things to stop and see all up and down the major roads.

Now, when my friends leave in the morning to go hiking at whatever mountain they’ve chosen that day,  I drop them off, and then go sightseeing for a few hours until it’s time to pick them up again.

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Of course, this plan wouldn’t work without the right people.  I’m really loading this post up with cliches, but hey– it’s not just what you do; it’s who you’re with.  Anything can be fun with the right person.

I am grateful to the people I’ve found in my own life, who are able to appreciate the little things with me.  To friends who give me their car for the day so I’m not stuck at the campground.  To a friend like Romina, who can make a tour of her hometown so much fun.  (And of course, to her father and his wife, who sent us home with about 30 pounds of food Sunday night).

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Peruvian-American fusion.

It’s all about figuring out what matters to you, and makes you happy.   And remembering to seek it out, even if it’s in a different form than what you once would have expected.

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Photos of Providence:

Creative Writing, Inspiration, mindfulness, My Story, Sacroiliac Joint

Lessons from an amazing weekend

I had a crazy, fun-filled weekend. The kind of weekend I haven’t had in at least five years. 4634683686_d575b661b5_o

Five years ago, my friends and I went to a “tango night” at a local restaurant.  It was an amazing evening.  The teachers were professional dancers, and a lot of the other students were from other countries.  There was such a fun, friendly, open vibe to the night.

The evening started out with a free tango lesson, and then afterwards, the dance floor opened up to anyone who wanted to come and dance.  Some truly amazing dancers showed up.  I was in my element, starting to picture myself traveling through Argentina.

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But as the night went, on my knees started to hurt. At first, I tried to ignore the pain, but it got worse and worse until eventually, I had to sit down and watch everyone else for the last two hours.

“We’ll go back,” my friends and I all said at the end of the night. I thought I’d fix my knee problems, and organize another group outing in a few months.

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Of course, it never ended up happening.  People got busy; the friend who organized it the first time moved away.

And I ended up spending the next five years having trouble walking.  My knee problems got a lot worse before they got better, and the months I spent limping and carrying my weight unevenly led me to develop the SI joint issues I still have today.  Basically, it’s been five years since I could stand, or walk, or dance without so much as a thought.

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Yet somehow, this weekend, everything clicked. I didn’t plan it– I just got caught up in the flow of things, and went where my friends went.

I guess all my strengthening exercises are starting to really pay off, because somehow, I went out dancing Friday and Saturday night. Friday night, I was in one of those loud, crowded bars I normally hate, but the band was actually amazing, and I found myself out on the dance floor with the group.

And then Saturday? Well, it wasn’t tango, but some friends went to a salsa night. I didn’t make it in time for the lesson, but I did make it out onto the dance floor afterwards. I wouldn’t say I wowed anyone with my salsa skills, but I also didn’t need to sit down once the entire night.

But here’s what really shocked me: I was back to where, physically, I had left off five years ago. But nothing about it felt monumental or life-changing.

What was life-changing? Everything it took for me to be okay, in the past five years, when I couldn’t have a weekend like this. All of the restraint it took; all of the patience I was forced to cultivate.

Don’t get me wrong– I haven’t stayed at home for five years, I’ve gone out– but it was never without compromise, never without having to constantly be aware of the nearest chair.

I’ve had to make peace with the fact that I’d be sitting by myself when an amazing song came on and everyone else wanted to be on the dance floor. I’ve had to perfect the art of looking calm, confident, and busy doing things on my cell phone.

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I’ve been through so much pain, frustration, and effort with my SI joint, I can’t even tell you. As much time as I’ve spent actually exercising, I’ve spent about three times as much time trying to learn about the problem. Researching the joint, consulting different doctors, chiropractors, and PT’s. Learning what movements not to do, which has been just as important as finding the right exercises.

That’s the thing– and I think anyone with chronic pain and health issues knows this– mind over matter doesn’t work. And actually, it’s counterproductive to push yourself into doing something that isn’t good for you.

You have to listen to your body: fine-tune your balancing act of when to push and when to rest. You have to become still.

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Something that’s helped me immeasurably is learning how to meditate. I actually don’t meditate every day, but learning how to be in the moment in that way has really spilled over into my daily life.

For me, meditation is like an experiment. You take everything that’s bothering you– whether it’s physical pain, or emotional, or stress and anxiety– and you just tell yourself, “Yes, this is all happening… but what if I was okay, anyway?” The problems are all still there, but just for a few minutes, you stop trying to fight them. They exist, but you see that underneath it all, you actually are okay.

Even after I’d only had this experience a few times, I felt as though it began to change the way I saw the world. I just felt calmer; more at peace. Somehow, it started to feel easier for me to notice the good in the world.

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There are different ways to grow as a person. You can go on a journey through the world– you can travel, meet people, and see fascinating things.

But you can also journey inside of yourself, and that can transform your perspective just as much.

I have had to learn how to find peace in the moment. I haven’t had the option of going out and losing myself in the way people describe when they talk about travel. I’ve never backpacked through Europe… I’ve never even backpacked through the White Mountains, like just about everyone else I know.

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But I have been transformed, no doubt.

It’s tempting for me to try to compare myself to other people, to suggest that maybe I have actually learned more by being forced to stay still, compared to people who have been able to leave their problems behind by going out and doing things. But that would be wrong– I don’t know what journeys people are on, or what they are learning.

But I can compare myself to my past self, and say that the things it takes to make me happy now are very different than the things I used to think I needed to be happy.

That night that I was forced to sit down at Tango Night, I thought I was losing a piece of myself that I wouldn’t get back until I could come back and dance again.

Now I see that I didn’t lose anything at all.  In fact, I gained something.

And that is a lesson I’m grateful to have learned.

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Credits for the photos in this post:

 

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Favorites, Inspiration, Interesting Articles, Neil Pearson, Pain Science

Neil Pearson on Building Hope and Recovery

I know I may have mentioned this once or twice before on my blog (or in like every post), but in case you missed it: Neil Pearson‘s work changed my life.

It all started when I met a physical therapist who had studied with Neil. This physical therapist opened my eyes to a relatively new approach to chronic pain treatment, called pain neurophysiology education. Ultimately, I was so inspired by what I learned that I began to consider physical therapy as a career.

I have written a lot on these experiences, and I always urge people to watch the three online lectures, given by Neil himself, that my physical therapist insisted I watch when I first began treatment with him.

For me, these lectures have always been a springboard– I come away wanting to know more.

Well, I was poking around on the Internet last night, and stumbled across this amazing webinar, Building Hope: The way through pain to self-management and recovery.  In this Neil Pearson discusses some new ideas and approaches to treatment that I hadn’t heard before.

The webinar itself is hosted by the Canadian Institute for the Relief of Pain and Disability, a really cool organization that’s worth checking out in its own right. They have a lot of great resources, and I love their compassionate, actively pro-patient stance. (Obviously, every organization tries to be “pro-patient,” but CIRPD really seems to get it right).

Here are some of the key points I’m taking away from this webinar:

1) Neuroplasticity means the nervous system can be changed, and if it can be changed one way (as in the case of chronic pain/central sensitization), it’s also possible to change it back.

2) Even just visualizing movement can help the nervous system inhibit its own pain signals. Research has established that exercise is a great way to stimulate your body’s own internal pain controls, but when the movement itself creates more pain, it can be counterproductive.

That is the beauty of just visualizing movement. As far as your brain is concerned, visualizing a movement is very, very similar to actually performing it.

As Neil explains at the 17:10 mark, visualization can actually help to stimulate the nervous system to inhibit pain. Over time, after you let your nervous system “practice” moving through visualization, you may find you have less pain when you actually go to move.

I think this is seriously SO cool. I can’t even find the words. It’s things like this that really inspire me to become a PT, and help people living with pain. (My takeaway: I want more information on this right now!!!).

3) You can help the nervous system block out pain signals by distracting it and giving it other information to process. You can use touch, or movement– even if it’s very very small movement.

4) Repetitive, rhythmic movements in particular can help to calm the nervous system by giving it something else to focus on other than pain. Rhythmic movements such as walking, breathing or even rhythmic gum chewing (what?!) have been shown to release more serotonin and help control pain.

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I just honestly can’t even tell you how inspiring I find all this stuff.

I am fortunate that, right now, I am mostly able to move without significant pain. (Due to my SI joint concerns, I do have to be cautious).

But it’s nothing like the place I used to be in. I can remember a time in my own life when even thinking about moving was terrifying. I just felt truly stuck– like my body was a jail.

I can also think of people I’ve met– through blogging, reading stories, as well as the patients I’ve met while shadowing physical therapists– who are in equally as much pain, and seem to be trapped within their bodies.

These are people who, through no fault of their own, are in too much pain to move. It’s not that they’re lazy; it’s not that they’re depressed. It’s not that they don’t want to get better.

It’s just the way the deck was stacked; the way the cookie crumbled.

They are in too much pain; their injuries are too great; their nervous systems too sensitized. Perhaps they are obese; perhaps there are multiple health conditions going on.

Whatever the reason– it is so amazing to know that there is a way to begin to help them, without requiring them to move before they are ready.

I want to help those people. I want to be that physical therapist that comes in and helps the hard cases, the ones other medical professionals may have secretly labeled impossible. I want to sit with those people, and look them in the eye, and tell them that there is a way out of this.

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I hope that you enjoy the video, and that you will also check out more from CIRPD and Neil Pearson. The webinar was also co-sponsored by the Canadian Pain Coalition and Pain BC— two additional groups with a lot to offer (why does Canada have all the cool organizations?). I could say more about how cool they are… but that will have to wait for another post.

I hope you are as inspired as I am! As always, don’t hesitate to let me know what you think!

My Story

Sense of Place

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Ironically, I have a feeling this is going to be somewhat of a meandering post… because I have a lot of thoughts I want to share on the topic of staying in place.

I moved somewhat recently (last spring) after living with family for several years. I didn’t move far (still in the suburbs of Boston, only closer to the city now).

However, it’s been a time of big change for me, because I’ve been trying to figure out how to do a lot more things for myself rather than relying on my family. This is true of things that everyone has to learn to deal with at some point (for example, putting my own furniture together; installing my own curtain rod). Just those boring, annoying adult things.

For me, there is an added layer of difficulty, because of my sacroiliac joint issues. As I’ve mentioned in previous posts, I am doing better than I was a few years ago, but I know from past experience that times of change are when I’m more likely to inadvertently push myself too far, and have a setback. It takes time to adapt to a new place, to a new routine; to figure out what works for me, and what I should avoid.

It’s been my grand experiment. It hasn’t always been pretty.

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One of the questions I’ve asked myself is, what is family? For so long, I relied on my family members for help, assuming they were the only ones who would be willing to help me with the kinds of favors most people don’t have to ask for.

My friends knew about my struggles, but I mostly tried to avoid asking for help, except for the times when it couldn’t be avoided.

However, I am not a scared and confused 20-year-old anymore. I am 30. (And no, 30 is not old. I feel amazing, and so excited about the future!). But it’s time to start branching out– to find new ways to do things, and new ways to relate to the people in my life.

Can friends be family? Or, in other words, can I redefine my relationships with my friends, and come to count on them the way I have counted on my family?

I definitely have not done it perfectly. It’s been a learning experience.

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Something I’ve learned is how far people will go out of their way to avoid hurting your feelings. They’ll do things that ultimately hurt you more– they’ll talk behind your back, they’ll plan a trip that involves a lot of walking, and won’t invite you– anything other than tell you to your face.

I’ve had to get better at reading between the lines. I’ve found it to be helpful if I can just take a guess at what might be wrong and offer an apology, even if the person insists everything is fine. I’ve had to get better at clearing the air; at addressing the problem as promptly as I can rather than letting it fester.

Things get awkward sometimes, because I can’t always repay a favor the way people would normally expect. For example, if one of my friends comes over and helps me carry my new mattress inside, I can’t go over the next week and help her move her couch. I have to find another way to contribute to the relationship.

Obviously, people do things out of the goodness of their hearts. It’s not as though, the very first time someone does me a favor, they expect something in return.

But over time, it’s important to show that you are also willing to help, and how much you care. There have been times where I thought I was doing a good job of this, only to realize that in some cases, my efforts weren’t really noticed.

It’s been frustrating for me, because the truth is that I put a lot of time and dedication into my friendships– to be there for people, to listen to them. I’ve come to find out the hard way that this effort isn’t always recognized.

I think it’s partly because listening comes so naturally to me. I actually love sitting down with people and sorting out their problems (it’s why, when I was in college, I wanted to be a psychotherapist). Because I enjoy it so much, and (let’s face it) I’m good at it, people don’t always realize that it can be excruciatingly hard work at the same time.

So, I’ve had to learn how to communicate better. To let people know how and when I am putting in effort, because they don’t always see it on their own. It’s all about being open, honest, and direct, while maintaining a non-confrontational stance.

What I’ve learned is that you can redefine your relationships with people. You can become closer to people, and ask more of them. But you have to be willing to put in more effort yourself– and to be prepared for people not to notice it, especially if it’s not in a form they’d expect. When that happens, you’ll need to find a graceful way to point it out.

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Although this post is about people more than it is than geographic location, “Sense of Place” is the only title that makes sense to me. After all, it’s other people that form so much of our sense of place– the feeling that we belong, the knowledge that we will be okay.

But I do love the area I moved to– I am somehow still surrounded by conservation land, trails, and parks, am yet much closer to the city than I used to be. I love it– the hustle and bustle of life around me, yet against a backdrop of so much natural beauty.

As I’ve mentioned previously, over the course of the past few years that I haven’t been able to run, I’ve learned to find peace in standing still. So, over the past few months, when I’ve felt overwhelmed, I’ve turned to the natural beauty around me, and drunk it in.

When things haven’t gone my way, when I’ve felt that my “sense of place” in the personal sense was still under construction, I’ve always had my internal connection to the natural world, and that has been my anchor.

It took a while– to learn the area, to feel at home, to re-evaluate my connections with the other people in my life. It’s a work in progress, but it’s working out.

 

 

Central Sensitization, Chronic Pain, Favorites, Pain Science

What is central sensitization?

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

Practice Makes Perfect

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

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Photo: t.spang

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

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

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Photo: Alan Levine

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

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

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

Central sensitization can also occur in someone who has suffered a larger degree of physical trauma in a shorter time period. For example, it can happen to someone who’s had surgery– even if they were under anesthesia at the time.  Consciousness isn’t required for central senstization to occur.

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

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

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Photo: Maryl Gonzalez

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

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

Invisible Illness

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

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

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

The Common Link

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

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

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

Citations:

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

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

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

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

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

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

A Note to My Readers:

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

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

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, Sacroiliac Joint

My saga with the sacroiliac joint

A note:

Hi everyone!  If you’ve found this post, you’re probably looking for information on SI joint issues.  This seems to be the post that Google brings the most traffic to, probably because it’s the first one I ever wrote on the subject.

However– although I’m proud of everything I’ve written, this particular post is not the best post to help you find answers!  I’ve come a long way since I wrote this, and have even started a separate site, My Sacroiliac Joint Saga, to share what I’ve learned.

I’m leaving this post up as a testament to the fear and confusion I felt when I had first developed my injury.  However, things are definitely not as bleak as they seemed, and help is available.  Please don’t let this post be the only thing from me that you read– I’ve learned so much since writing this!

And now, here is my original post from May 2014, which I’m leaving up for the purpose of telling my story ONLY:

So, let me start out by saying that I feel totally crazy writing some of this.

Most of what I write about has a good deal of scientific research to back it up. I take this very seriously, because the internet can be a such cesspool of conspiracy theory and misinformation.  The last thing I would ever want to do is be the kind of blogger who adds to that.

But I don’t really have many scientific facts to back up this post with. And it’s not for lack of trying.

Since this ordeal has started, I’ve seen one orthopedist, five physical therapists, and two physiatrists (the word is confusing, but their specialty is Physical Medicine & Rehabilitation, not Psychiatry).

I’ve also spent a long time trying to find information about the sacroiliac joint online. Google searches turn up next to nothing. And searching the publicly accessible scientific databases such as the National Institutes of Health only turns up articles about people who seem to have different problems than me.

So I’m just going to write this based on my own experience.

***

This post picks up after where I left off in “How a physical therapist helped me through my lowest point, Part 8.”  In that post, I talked about how I was developing chondromalacia patella in my right knee, and that it was made worse by the fact that my physical therapist told me the pain wasn’t significant and that I could try to ignore it.

After a few months, things had gone from bad to worse and I was limping almost all of the time.

And, after weeks of limping, came the first time one of my sacroiliac joints locked up.

I was walking along, just minding my own business, when I felt this strange sinking feeling in the back of my left hip. The sinking didn’t hurt, but it was followed immediately by a “catching.” And the catching did hurt.

And once whatever it was that was caught had caught, I could barely lift my leg. Like, I could barely get it off the ground high enough to put it down in front of me. Going up stairs normally, even small ones, was out of the question, because I literally could not get my left leg high enough to place it on the next step, let alone put any weight on it once it was up there.

I had been seeing a chiropractor for a while at that point, because all the exercises I’d been doing in PT had made my lower back to start to hurt.

I went in that day, and he told me right away that it was my sacroiliac joint. I’d only heard of this joint in passing before—just one more word on the diagram in my anatomy and physiology class. It hadn’t even seemed like an important enough joint for us to talk about it at all in class.

It didn’t take him much time at all to click away with his activator and get the joint to fall back into place. I was able to walk out of the office normally, although it was a day or two before I was brave enough to try using that leg normally on stairs.

***

A few weeks later, the same thing happened on the right side. I was getting ready for a quick chiropractor visit before I had to drive to class that night when I experienced the same sinking and catching feeling. I felt as though I had a stilt under one leg, although which leg felt like it had the stilt under it kept changing.

I rushed off to the chiropractor, only to have the secretary tell me he was running late. I realized I didn’t have time to wait for him and still make it to class in time, so I burst into tears in the waiting room. It was pretty embarrassing.

Luckily, he came out from the treatment room he’d been in and saw me in tears, so he fit me in.

***

This was the beginning of the absolutely crazy pattern I’ve been caught in for the past few years.

I feel crazy, because I’ve fallen into the exact kind of trap that so many people with chronic health problems fall into, and it usually isn’t productive.

I’ve come to count on one type of health professional to help me—and it’s not one that is generally well-respected by mainstream medicine. And I’m not getting the same explanation from him that I’ve gotten from all the others.

But in this case, the thing is… I didn’t really get an explanation at all from any of the others.

And I don’t feel like I was asking them anything super outlandish. Again, this is a joint you’ll find on a basic diagram of the skeletal system. Like, anatomy 101.

I wasn’t asking them to give me their opinion on specific acupuncture points, or the merits of reflexology. This joint is something they’re supposed to be able to help people with.

But it seems like most of the literature and treatments that I found in my attempts to find scientific information with have to do with a sacroiliac joint that is painful. Or inflamed. Or “unstable,” which is the term that means the ligaments that are supposed to hold it in place are too stretched out to do their job.

I couldn’t find anything about what to when the sacroiliac joint becomes stuck.

The ilium, which is the very back of the hip bone, is supposed to line up perfectly evenly with the sacrum, which is the base of your spine. In my case, assuming my chiropractor is correct, my ilium is getting stuck too far back, behind the sacrum.

All of the papers I read, after describing problems that I didn’t sound like mine, concluded with the phrase “further research is needed.”  It was clear that the authors didn’t feel like their results were definitive enough to make a clear pronouncement about the sacroiliac joint, one way or another.

***

I’ve spent so much time living with this problem, I can feel it the second my SI joint starts to lock up.

Once in a while it will turn out to be a false alarm– I’ll move in a way that sets off the old familiar pain, and I’ll freak out, but an hour, I’m still able to walk normally.

But all too often, it’s not a false alarm– I feel the catching sensation, and then no matter what I do, I’ll be limping for days, until I finally give up and go back to the chiropractor.

***

So this is the trap I’m in. I still go to a chiropractor several times a month.  Once my hip has become caught in that peculiar way, a chiropractic adjustment is the only thing I’ve found that can make it become unstuck.

Meanwhile, I’m reading all these other blogs by people I really respect, who’ve turned out to be right about a lot of other things, who all say that chiropractors are at best misguided, and at worst, con artists.

I’m still waiting to find out that I’ve been completely wrong about the whole thing. That maybe my chiropractor was wrong, and that I didn’t feel exactly what I’ve been feeling.

That maybe the “sticking” feeling isn’t always coming from the joint itself.  That maybe my muscles are just tight, and something about the chiropractic adjustment is loosening them.

That’s why, from time to time, I check in with other medical professionals. But surprisingly, none of the people I saw told me to stay away from chiropractors. Both of the physiatrists I saw actually expressed admiration for someone who had enough expertise to be able to manipulate a joint that was, to them, still quite mysterious.

***

The only helpful article I’ve found about the sacroiliac joint, EVER, is this one by Roger Cole.

He explains that in many people, the sacroiliac joint becomes fused as they age. This is particularly true for men, starting around age 30. By 50, almost all men’s sacroiliac joints have become fused.

This means that the two bones, the sacrum and the ilium, fuse and become one bone.  The joint no longer moves at all.

But in women, particularly younger women, as well as people who’ve retained a lot of flexibility through yoga (which, he points out, might not actually be a good thing) this joint tends to remain unfused.

This is one reason why the medical profession might not have a good handle on this joint. Up until recently, it was pretty much only men studying anatomy, contributing to medical textbooks, and practicing medicine. And by the time they’ve actually become successful doctors and surgeons, these men’s own sacroiliac joints have completely fused.

And even for women like me, it seems like most of us need to have some kind of precipitating event to have issues with this joint.   My web research tells me, at least anecdotally, that it seems to most commonly affect women during and after pregnancy.

I don’t think any of my readers will be too surprised that a problem that disproportionately affects women might not have received enough attention from the medical establishment.

***

So basically, my plan now is just get stronger.

It’s actually my main chiropractor, Dr. K., who first convinced me to join a pool and stop working out land.

For months, after I had first come to him with a locked up sacroiliac joint, he started telling me that getting stronger would be the only way I’d get better, and stop this problem from happening.

I had all kinds of reasons why I didn’t want to join a pool, but in retrospect, this problem would not have gone on for nearly as long if I’d just stopped the land exercise and joined a pool the minute my knees started hurting.

So for those who are inclined to think of chiropractors as con artists, Dr. K. really got on my case about joining a pool.  He made it clear to me that his adjustments would only help in the short-term, but in the long run I was going to have to get stronger.  And that the only way he saw me doing that was in water.

Over time, he got progressively more emphatic:

“Just go online and see what gyms around here have pools.”

“Just make one phone call about joining.”

“Just go in person and check out one pool.”

Finally I did, and I’m still kicking myself (or I would be, if my joints could move) for not doing it sooner.

***

Since I’ve been working out in water for about a year and a half now, I am a million times better.  I haven’t completely stopped my SI joints from “sticking,” but now that I am stronger, they don’t “stick” quite as badly.  It also just doesn’t bother me quite as much when they do, because I have more strength in other areas of my body to compensate with.

So I am not out of the woods yet, but at least I feel like I am learning.

As I’ve promised in previous posts, I plan to be writing more about the specifics of my exercise program, as well as the exercise science concepts that I think are really useful for anyone with chronic pain and biomechanical dysfunction.

Stay tuned!

***

Again, this is an old post (from 2014), and it is NOT my most informative post on the subject!  I’ve learned so much since then, and have so much more to say that you might find helpful!  Please be sure to check out My Sacroiliac Joint Saga for more. 

You can also check out my more recent posts on this blog.  

Disability, Inspiration

Amazing TED talk: Deep Sea Diving in a Wheelchair

I was so inspired by this TED talk that I had to share it with you all.

Sue Austin is a multimedia, performance and installation artist who lost the use of her legs due to an illness.

A new world opened up for Austin when she received her powered wheelchair, yet she was disheartened by the way other people looked at her. She says it was as if she had an “invisibility cloak” draped over her; that when people looked at her, they saw only their own preconceptions about what life in a wheelchair must be like.

To always be regarded with this combination of fear and pity was hard on Austin.

She explains,

“I realized I’d internalized these responses, and it had changed who I was on a core level. A part of me had become alienated from myself. I was seeing myself, not from my perspective, but vividly and continuously from the perspective of other people’s responses to me.

As a result, I knew I needed to make my own stories about this experience; new narratives to reclaim my identity.”

She began to explore the ways in which she could use art to challenge people’s ideas about life in a wheelchair. The results were absolutely stunning.

Check it out– you’ll see what I mean.

P.S. The format of the video turned out a little bit strange here (thanks a lot, WordPress). I recommend either expanding it to full-screen, or else watching the original in its intended format on the TED website.  Sorry about that!

You can also check out Sue Austin’s website at http://www.susanaustin.co.uk/