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!

Central Sensitization, Chronic Pain, Inspiration, Interesting Articles, Nervous System, Pain Science

The Four Categories of Pain– Dr. Jay Joshi

Hi everyone!

I’ve just discovered this awesome talk on central sensitization by pain management physician Dr. Jay Joshi.  It’s totally packed with information I want to share with you all– such as why it’s so hard to get help for central sensitization, and how ketamine infusion treatments can help.  There’s so much here, though, that I thought I’d break it down into bite-sized information for you.

So, to start out, let’s look at what Dr. Joshi says are the four main types of pain.  (For the purposes of this blog post, I’m actually jumping ahead to the 8:50 mark– later, we’ll come back to the beginning).  

The four types:

  1. Nociceptive
  2. Neuropathic
  3. Inflammatory
  4. Central Sensitization

1. Nociceptive pain: pain that results from actual tissue damage, or potential tissue damage (like if you’re starting to bend a joint past its normal range of motion).  It is “the common discomfort we have all experienced as a result of injury — a paper cut, a broken bone, or appendicitis, among other things.

More on nociceptive pain and its subtypes

2. Neuropathic pain: involves physical damage to the nerves or the central nervous system itself.  It can also occur when the person has a tumor that’s pressing upon a nerve.

3. Inflammatory Pain: Pain produced by the chemicals our body releases as part of the inflammatory or healing process.  On a small scale, think of how a bruise swells up and is painful to the touch.  This is because our body is sending special cells and chemical messengers to that part of our body in order to heal it– and also to make it painful, so that we know to protect the area.  This is inflammatory pain, and it can also happen on a much larger scale with more serious injuries.

4. Central Sensitization: And here we are– the type of pain that’s most affected my life.  It has to do with the concept of neuroplasticity: that the central nervous system (the brain and spinal cord) can change in response to the things it experiences.

When your body experiences a painful event or an injury, it learns from that experience, the same way it learns from anything.  Practice makes perfect– when your brain gets enough practice at sending pain signals, it gets better at it gets better at it.  In a way, this is for your protection– you learn and become more sensitive to performing the same kinds of actions or motions that may have caused this injury in the first place.

However, as a protective mechanism, central sensitization can sort of backfire.  Eventually, we can reach a point where our nervous systems are trying to protect us too much, when we’re not really at risk of injury anymore.

So these are the four main types.

Unfortunately for those of us suffering from central sensitization, it’s the type of pain that doctors and other medical professionals know the least about.

As Dr. Joshi explains, “there are physicians who claim to be pain physicians… who are anesthesiologists… who don’t even understand it.  And they’re teaching at major programs.  It’s scary.”

Central sensitization is as real a type of pain as any of the other three.  And, as Dr. Joshi says, if you’re going to be able to adequately treat pain as a doctor, you better be aware of all four categories.

***

Dr. Joshi also has some really great analogies which help to explain the phenomenon of central sensitization further.  I’ll be elaborating on some of those in my next post.

I hope this was helpful!

***

Also: you may have noticed that I’ve been playing around with my blog’s format.  I’ve honestly never truly been happy with the appearance of my blog, because I find my options are so limited with premade WordPress themes.  I’m beginning to experiment a little (and even spend a little bit extra!) to try to get things right.  If you have any thoughts or suggestions how improve the appearance of my blog, please let me know!

 

 

 

 

 

Chronic Pain, Creative Writing, Inspiration, Sacroiliac Joint

The push & pull of when to keep going, and when to rest

Yesterday I was trying to drive home in rush hour traffic, along a route I wasn’t familiar with, and I ended up taking one wrong turn after another.

For those that know Boston, I was trying to get on Storrow Drive West, but somehow ended up going up Route 1 North, over the Tobin Bridge.

I took an exit and tried to turn around, only to find I kept making more wrong turns.  I thought I was going up a ramp to get back to Route 1, only to realize I was driving on something I wasn’t quite sure was a road.  (By the way, normally I’m a very good driver, it was just a weird area!).

And then, the next thing I know, I ended up in Chelsea, driving up this beautiful hill towards a residential area, and I look out and see this as my view:

Don’t worry, I pulled over to take these photos!

For some reason, it got me thinking of all the twists and turns in my journey.

All the times I’ve been mad at myself for trying too hard (like starving myself and running a billion miles a week cause I was afraid I was going to get fat).

And all the times when, looking back, I was afraid to try too hard and so gave up too soon.

***

Honestly, what I think now is that you just never know what lies ahead. And blaming yourself and giving up are, in a way, just our attempts to try to have control over a difficult situation.

The older I’ve gotten and the more I’ve learned, the more counter-productive I’ve seen that self-blame can be.

I‎t just isn’t useful; it doesn’t prove a point; it doesn’t get us any closer to the answers.

The truth is that there are answers I’ve found through hard work, and there are answers I only found because I happened to stumble upon them.

The one thing I wish I could really change, though, is all the times I held back because I was afraid of looking too hard. As if giving in and admitting I truly had a problem was the same as giving in to it, when actually that’s what it was going to take for me to overcome it.

Sometimes the right path will look like the wrong one, or the one that couldn’t possibly work (like me driving on a road I wasn’t quite sure was a road).

You just have to keep going and have enough faith in yourself to know that, ultimately, you’ll figure it out if something is or isn’t right for you.

***

Someone asked me the other day how I found my physical therapist Paula– the person who finally really helped me with the SI joint.

The answer is simple, but also complex.

Technically, I found her because I happened to do a Google search for “physical therapy sacroiliac joint” and the name of my hometown (where I was living at the time). The website for the practice she worked at popped up, with her online staff bio, where it listed the SI joint as one of clinical interests. Simple, right?

But there are so many more layers to this. Such as the fact that she’d been working there for over five years, and somehow never came up in any of my millions of Google searches. (I’m still not sure how this happened, if someone redesigned their website at just the right time, or what).

I’d looked and looked and thought I knew of everyone in our area, but somehow, I’d missed her.

***

I wasn’t going to look at all, actually.  I’d already seen FOUR other physical therapists, all of whom had either failed to help me, or made things worse.  I felt done.

It was my ex-boyfriend Tim who convinced me to look again.   He pointed out that maybe this was just what it took for me to find answers.  He got me to see that maybe four physical therapists wasn’t really that many.   Not if my entire life was on hold.

He told me about one of his friends, who, for years, suffered from constant sinus infections.  This friend saw multiple doctors who said there was nothing they could do, yet he refused to take no for an answer and kept seeking out other opinions.  Finally, he saw a specialist who told him that by luck of the draw, he’d been born with nasal passages that were too narrow.  This doctor was able to fix the problem with minor surgery.

So there are no hard and fast rules here. There’s no way to guarantee an easy answer.

The only guarantee is that if you waste time judging yourself, or being afraid to admit that you really have a problem, or assuming that no one will be able to help you… you’ll be more likely to push away your chances to find answers.

I finally found Paula through luck, probably because my search engine results changed.

But I also only found her because I had someone who cared about me to tell me I was judging myself and my situation too harshly; that I was jumping to conclusions about not being able to find help.

***

This started off as a post about finding answers, but in a way this post has turned into somewhat of a thank-you to Tim, as well.

So thank you, Tim. (We’re still friends and I’ll be sending him the link to this after I hit publish).

I hope you all are able to believe in yourselves and keep fighting.

And I hope you also, in one way or another, have a Tim.

Creative Writing, eating disorders, Inspiration, My Story

Things I’m grateful for: people who are brave enough to tell the stories I’m not

I’ve just discovered Rachael Steil’s sharing of her story as an elite college runner with an eating disorder.

And I’ve really been blown away, both by her bravery in telling her story, as well as her clear and honest explanations of what she and other people with ED’s go through.

I still haven’t shared too much about my own past with an eating disorder– I started to touch upon it in this post— but really, I have a story that’s as long and complicated and intense as hers (minus the part about being an elite college runner– I had long been injured by then).

But I relate so much, to the concept of losing a little bit of weight, and finding it makes you faster, and so then wanting to lose a LOT more.

Of latching on to healthy, trendy “lifestyle” diets– in her case, the raw food diet– because ultimately, you know it’s giving you a way to hide the fact that you have a problem from other people.

And of the paranoia of thinking that if you overeat, even if just for one day, you’ll gain enough weight to slow you down and ruin your time in your next race.

I so, SO appreciated her story, and I can’t wait to read her book.

I think that, when talking about this kind of thing, it’s really important to strike the right balance between sharing the some of the scary aspects of what you went through, while also reassuring people that you eventually found a way out.  That’s one thing that’s held me back from telling my story more– I want to be sure I do it right.

I think Rachael has managed to strike that right balance, so the way she tells her story is really an inspiration for me.

Hope you check it out!

Rachael’s website

Youtube channel, with many more great videos

Her book Running in Silence

 

Central Sensitization, Chronic Pain, Fibromyalgia, Inspiration, Pain Science, Resources

Dr. Sean Mackey on a potential reason for chronic pain

Hi everyone!

Here’s an amazing lecture from Dr. Sean Mackey of Stanford University on the various potential causes of fibromyalgia.

On my blog, I tend to focus on the factor that I know has played the largest role most directly in my own life– central sensitization.  The idea that central nervous system can become more sensitive to pain, as a result of physical pain or trauma that a person experiences.

Central sensitization (CS) has played a huge role in my own life, and I’ve come to feel that for me personally, it’s the best way to try to understand my nervous system.  That’s why I’ve written more about CS than I have about fibromyalgia specifically (although, as Dr. Mackey explains, there are other potential causes for fibro that we need more research on as well).

***

I felt like including this lecture for you today because it ties a lot of different things together for me conceptually whenever I’m try to decide where I’m going with this blog.  (It was one of the very first things I linked to in my “Resources” section back in 2013, and I’m still so glad I found it!).

***

One of the points I most appreciate in this talk is when, around the 18:00 mark, Dr. Mackey talks about an evolutionary benefit for our nervous systems learning to become more sensitive to pain.

Usually, when we think about chronic pain/central sensitization, we think of it as some horrible defect of the nervous system.  And yeah, I mean, it kind of is.  Something is definitely not working there the way it was intended.

However, pain is ultimately a mechanism that’s there to keep us safe, and it’s brought me a lot of peace and comfort to remember that.

Dr. Mackey points out that, back in our cave people days, it actually made a lot of sense for our nervous systems to freak out after an injury.  After all, we weren’t living in safe and comfortable houses and getting up to go sit in an office all day.  Instead, we were out there, walking great distances, running, hunting, fighting.

He says:

Pain serves as a survival message for us… Back in the cave people days, when we were out fighting the woolly mammoth and the saber-toothed tiger, when we got injured, it was in our best interest to go sit in a cave and let Nature take its course and heal up that injured limb… Because if you went out and fought them when you were injured, you got eaten, and you didn’t get to pass your genes along.

So it actually made a lot of evolutionary sense for a cave person’s nervous system to freak out after an injury and slow the person down, forcing him or her to rest.   The people who ignored their injuries and went back out there too soon didn’t always make it back to the cave afterwards.

Maybe our nervous systems “learn” to become more sensitive to pain, not because it’s some weird fluke or accident, but because that’s exactly what they were designed to do.  In another place and time, maybe this exact phenomenon is what would have kept us safe.

***

In general, this is how I’ve learned to think of pain, and it’s a perspective that many of the resources I share on my blog are all coming from.

After all, it’s the basis of pain neurophysiology education– to help a chronic pain patient learn to see her nervous system as an overactive alarm system, or an overprotective friend.  Pain is not an enemy; ultimately, it’s a protector.  And once you learn to work with your nervous system, instead of against it, the effects can be really powerful.

***

I really loved this lecture, and also enjoy following Dr. Mackey’s work in general.   He’s involved in some ground-breaking research at Stanford that uses something called fMRI to take real-time pictures of the brain, and exactly that it’s doing when it experiences chronic pain.

You can read more on this in my “Studying Chronic Pain Through Brain Imaging” section– it’s really fascinating!

***

I also wanted to include something positive for you guys, after last week’s post about a doctor who totally blew me off.  I have certainly encountered my struggles in trying to get treatment, but ultimately, the thing to remember is that there are answers out there, and we are not crazy!

Our bodies are trying to protect us– they are just trying a little too hard!

Hope this was helpful, and that you’re all having a great week!

 

Central Sensitization, Chronic Pain, Creative Writing, Healthcare, My Story, Nervous System, Pain Neurophysiology Education, Pain Science, Treatment Approaches

The doctor who *almost* helped me (How I developed central sensitization, Part 6)

Okay, so here’s the story of the time I thought I’d found the right person to help me, which of course, made it all the more disappointing when it didn’t turn out to be the case.

In telling my story, I’m choosing to gloss over every little ache and pain I had; every time I thought I had some kind of injury, but no one could actually find anything wrong.  It’s not really necessary to the story, and I don’t want you to get bogged down in negativity.  The point, again, is that I did eventually find answers.

But here’s the story of the first time I thought I’d found them.

***

It was 2006; my first time seeing a physiatrist.  Physiatrists are doctors who specialize in non-surgical options to treat musculoskeletal pain– so, basically, they do everything else.  Their approach is generally thought to be more holistic.  They can provide options such as lidocaine and cortisone injections, but they also look at the patient as a whole person and can recommend lifestyle changes as well.  It’s a pretty cool specialty.

And I was pretty much seeing the best one.  I loved Dr. V. the first time I saw her.  She’d won all kinds of awards for going above and beyond to help her patients.  And she was just so… nice.  She provided me with so much hope.

Dr. V. reassured me that there was no reason, as a healthy person in my early 20’s, I shouldn’t be able to do all of the things I wanted to do.

She recommended a bunch of promising options, including trigger point injections, as well as medical acupuncture, which she actually performed herself.

And she was the first person to really explain to me that my brain was magnifying the sensations of pain I felt, “like a computer.”  My brain was “zooming in” and making what should be a small problem, or no problem at all, look like a big problem.

For a time, I really thought Dr. V. was going to be the one to finally “fix” me, to finally reverse this impossible pattern I’d been dealing with for so long.  I felt like she really got me.

***

Dr. V. seemed to understand that, from time to time, I would come in with pain in a new part of my body, and would need someone to tell me whether, in fact, I had an injury or whether it was just pain.

There were so many times. I felt safe; I felt believed.  I just needed a place to go where someone could tell me whether or not I had an injury or not.  I didn’t always need to be referred to physical therapy, or start some new treatment.  Sometimes, the pain would just diminish once someone actually told me it was safe to ignore it.  (Which, as I later learned, makes 100% sense once you learn about how the nervous system works).

The only thing is, Dr. V. did want to refer me elsewhere: to therapy.  She seemed to understand that my brain was distorting my perception of pain, but she kept coming back to the idea that it had a psychological or emotional cause (which, I would later learn, is not a prerequisite for central sensitization).

She offered me the names of a few different therapists she had come into contact with over the years.  I would go and see them, but nothing ever really “clicked.”  Because we were looking for something that wasn’t there– my pain wasn’t being caused by my emotions.

***

What I really needed, again, was for someone to help me understand my physical pain.  As I’ve explained in my Calming Your Nervous System section of this blog, when you have the kind of chronic pain I had (and still have, to an extent) it’s like your body’s pain protection system has gone into overdrive.  It’s trying to protect you, but it’s stuck in the “on” position all the time.

Luckily, the nervous system is complex, and although there are multiple components involved in keeping this process going, there are other aspects of the nervous system which can be used to turn the system “off.”

One way to do that is to understand, rationally, that your body isn’t actually in danger; that you aren’t actually injured.  This is actually the pain principle behind Pain Neurophysiology Education, the approach to chronic pain treatment that finally helped me.

Of course, I didn’t know any of this at the time, but I sort of stumbled upon this principle myself.  A new part of my body would hurt (or an old one would start hurting again) and it would feel real.  It would feel like something was wrong; something was injured or on the verge of breaking.

That’s why it helped me, to go in and see Dr. V.  To be examined by an actual doctor and be told nothing was wrong.  It helped my nervous system feel “safe” again.  Usually, I’d start feeling better within a day or so after my appointment, before I even got to physical therapy or whatever next treatment she’d recommended.  Because she’d already given my nervous system permission to relax and stop hyper-focusing on that part of my body.  The pain would be able to fade into the background.

And I was okay with this pattern.  It wasn’t ideal, but it was better than anything I’d found yet.  We hadn’t actually been able to break this cycle of mysterious pain that roamed throughout my body, but at least, with Dr. V. I’d been able to find a way to stop it from taking over my entire life when it started to get bad.

***

But here’s the thing.  I was okay with the holding pattern, but Dr. V. was not.  Because I wasn’t actually getting “better” in a linear fashion that she could write in her notes.  And because she could never actually find anything wrong with me.

There was one day I was 10 minutes late for an hour long appointment.  I’d had to take the Red Line to Mass General, where I saw her, and everything about that morning commute had just been a disaster.

And from the moment she walked into the room, everything had changed.  Her face seemed cold, like there was less color in it than usual.

And she told me she didn’t have time to see me that day.  That I’d been taking time away from her other patients; other patients who actually had horrible diseases and disfigurements and reasons to be in pain.

She said she’d tried to help me, but I hadn’t successfully utilized any of the options she’d given me.  And that if I wasn’t going to be responsible about trying to fix my issues, she wasn’t going to have time for me in the future.

And that was that.  I started to cry and attempted to explain myself, but it didn’t matter.  Her mind was made up.

She said she didn’t have time to stay and talk to me if I’d already missed 15 minutes of our 30 minute appointment.   Her secretary, who I’d sort of become friends with, overheard the whole thing and poked her head into the room, gently reminding Dr. V. that my appointment was actually supposed to be for a whole hour.

But it didn’t matter; Dr. V. was so angry at that point that no new information was going to make a difference.  It wasn’t really about the time; it was about getting rid of me.

She didn’t outright tell me never to come back and see her again, but by walking out of the room after 5 minutes, she’d made her message pretty clear.

So I never did.

***

Now that I know so much more about central sensitization, I can see that Dr. V. was wrong on multiple levels.  This is why I like to remind people that central sensitization was actually discovered in rats.  It has to do with brain function and neurons and neurotransmitters, not thoughts and feelings.

Somehow, it was like Dr. V. had vaguely heard of central sensitization somewhere, but hadn’t really gotten the full gist.  A lot of people are like that, actually.  They accept that the nervous system can process pain abnormally, but still think it must have to do with emotions.

And I never actually heard the term from her.  I only learned it once I requested a copy of all of my visit notes and saw it there, in my list of diagnoses.  It was #1: central sensitization.

That whole time– she could have just told me the name for it.  I didn’t even know there was one.  I could have learned about it myself– I could have Googled it.  It was discovered in 1983.  There was more information out there than I was given.

But no.  Central sensitization was just there in two small words, right under a lot of passive-aggressively worded comments about exactly how much of my appointment time I’d missed that last time.

***

It’s sad and it’s really shocking.  I do believe that Dr. V. is a good person who just didn’t have enough information, and who got frustrated.

But it shouldn’t be my job, to get “fired” as a patient and request my own office visit notes, only to finally learn there’s a scientific name for what I was going through that she’d never even bothered to tell me.

I could have looked it up myself and learned about it, instead of going on countless wild goose chases to psychotherapy and the terribly disappointing pain clinic she once sent me to.

***

But at least I have answers now, and you know what?  I think I’m sort of proud of myself for getting as far as I did, on my own.  After all, it basically means I’m a genius, since I was able to stumble upon the main principle of pain neurophysiology education all on my own (right?).

***

As you may know, what really did work for me eventually was to meet a physical therapist who had studied PNE with Neil Pearson.  This physical therapist taught me how to understand my nervous system, and to work with it, instead of against it, and to learn ways to get my body to turn the “volume” of the pain back down.

This is why I feel so, so strongly about PNE, and why I was originally inspired to become a physical therapist.

In a way, Dr. V. is part of my inspiration as well– I see how important it is for healthcare practitioners to actually understand the specifics of how chronic pain works.  It’s not enough to just be an empathetic person, because apparently empathy can be replaced by frustration over time, if a patient isn’t getting better.

If you want to know more about PNE, you can check out the Calming Your Nervous System section of my blog, and also definitely check out the work of Neil Pearson!

Hope this was helpful!

Creative Writing, My Story, Uncategorized, Women's Health

Seeing things clearly, without that added layer of judgement on top

I struggled with what to say on my blog this week, but I finally landed upon this idea as the thing that resonated with me at the current moment.

Something I’ve been realizing, more and more every day, is how much time I’ve spent judging myself for the problems I’ve had.  Not actively trying to solve them… just judging.

On some level I didn’t trust myself.  After all all of my difficulties in getting diagnosed and treated… at some point, I developed the belief that whatever health issues I was having, no one would really be able to help me.  My issues would probably always be too complex for any one person to truly understand.

From there, it became a self-fulfilling prophecy that played out from one issue to another.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.   I didn’t really believe there were answers out there, so I didn’t try that hard to look.  I gave up before the fight was over (until things got so bad that I finally didn’t).

Now I realize that, just because other people doubted me, I didn’t have to doubt myself.  And maybe, just maybe, I didn’t have to wait for things to get so bad before I took action.

In a way, my issues are too complex for any one person to understand, other than me.   I did have to step up, do my own research, and keep track of so many things myself.  But now I see that that’s a reflection on our health care system, not on me.

Everyone is rushed; insurance companies don’t pay for long enough visits, let enough adequate treatments.  (I personally feel that most of these efforts to reduce costs on the front end ultimately end up driving up costs on the back end, as people develop more serious conditions that could have been monitored or treated before they became more serious.  But I digress).

There was never any real reason for me to lose faith in myself.  My problems were real, and they had real answers.  (And you know what?  Even if they were in my head, mental health concerns deserve to be addressed too).

It’s like that quote from Eleanor Roosevelt:

“No one can make you feel inferior without your consent.”

For so long I gave so much of my power away… why?

There are so many bigger things happening in the world.  Why am I wasting time judging myself and holding back, when I could actually be contributing to something larger than myself?

For anyone who’s been struggling to make sense of what’s been going on in the world, I stumbled upon another amazing quote today, that was just exactly what I needed:

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I love this, so much.  Do justly.  Love mercy,  Walk humbly.  Nowhere in there does it say “second-guess yourself for trying to heal and then do nothing.”

I’m done trying to see things through the lens of “perfect” or how things “should be.”  I want to see things clearly (both in terms of the way I see others, and myself).

Judging yourself is really just a waste of time.

I want to have compassion for others, and maybe, for the first time in my life, also for myself.  I guess right now I’m learning what that means.

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This post isn’t supposed to be about just me (although it kind of seems like it, now that I read it over).  It’s actually supposed to be about getting “me” out of the way.  To stop getting caught up in a cycle where I judge myself instead of doing things, for myself or for others.

If you’re reading this, I hope you know what I mean, and that maybe this post was helpful to you, too.

Central Sensitization, Chronic Pain, Creative Writing, Inspiration, My Story, Quotes, Treatment Approaches

What’s in my chronic pain toolkit?

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As I try to get braver about sharing this blog with the people in my everyday life (it’s been relatively secret up until now), I want to be sure I’m clear about the fact that there are absolutely still days when I’m in pain.

The purpose of my blog is not to tell you I’ve got it all figured out, or that there’s a truly easy solution.  I know that pain, on some level, is always going to be a part of my life.

The reason I write is to share with you what I’ve learned– and what I’m still learning.

One of the most important lessons for me has been that pain isn’t a sign that you’re crazy.  It’s actually your body’s way of trying to protect you.  Unfortunately it’s not a perfect system, and when pain gets out of control, its effects can be devastating– whether you’re experiencing pain from central sensitization or another cause, such as an illness, injury, or disease.

This is why I am such a vocal advocate for pain neurophysiology education (PNE).  This type of chronic pain treatment taught me to see my pain not as an enemy, but as one of my body’s protective mechanisms.  It was almost like an overprotective friend.

This shift in perspective made all the difference for me in going forward–  I learned that, just as my pain has an “up” dial, it also has a “down” dial that I had some control over.

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However, I have other things in my pain toolkit, as well.

One of the things  I really swear by (which I’m sure most of you know by now!) is aquatic exercise.  Being in the water lets me get my heart rate up like nothing else, without having to worry about the risk of injury.

I have certain stretches that make up part of my daily routine.

I’ve learned to trust my love of music, finding that taking the time to listen to music I love  actually helps drive away my pain.

I’ve learned that if I stay hydrated, that makes a big difference in my pain, as well.

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I’ve learned that actually, many of the joints in my body are hypermobile, not just my sacroiliac joints.  And this is another reason why so many parts of my body hurt.  So I have to be careful with my joints– my knees, my elbows, fingers, and wrists, in particular.   I have to keep my muscles strong and pay attention to the way I do things as I go about my day.

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I’ve learned to tell when certain muscles in my body are becoming tight, and whether it’s an issue I can probably fix with stretching, or if I need to go back to my one and only trusted massage therapist.

It took me a long time to find someone who was able to use the techniques that were right for my body, and didn’t put too much stress on my hypermobile joints.  Now that I’ve found her, I appreciate her so much (thank you Lynn!).

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And I have, at times, taken pain medication (Tylenol and Advil never could cut it for me).   I have written briefly about the time I took tramadol for back pain.  Contrary to so many of the articles you’ll read, it a) genuinely helped me, and b) I stopped it when I needed to.  I did not become addicted.

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So my blog is about learning all that you can do to control your pain.  It’s also about learning to live with the knowledge that, despite your best efforts, you won’t always be able to control it.

You must develop your personal chronic pain “tool kit,” but you should also be prepared for the possibility that the pain may return, at times.  Because it can.  Despite what you know, when it comes back, it can wash over you like a wave, making it hard to remember what’s even in your toolkit.

But at those times, if you’ve already assembled your toolkit, if you’ve already taken the time to figure out what goes in it, you can remember it again; you can come back.  You won’t be lost; you won’t slide back to zero.  You’ve dealt with this once, and you can deal with it again.

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I read the most amazing article recently by author and vulnerability researcher Brene Brown.   It’s about staying true to yourself and charting your own way as an individual.

My favorite sentence, however, just happens to perfectly sums up what I’m trying to say about my experience with chronic pain:

“I’m an experienced mapmaker, but I can be as much of a lost and stumbling traveler as anyone else.”

So the reason I write here is to share my map with you.  I think that, at this point, I’m a pretty experienced mapmaker as well.  But it doesn’t mean I never get lost.

But I have my pain toolkit.   I’ve assembled it and I know it will always be there.  Sometimes, when I’m doing well, I begin to forget the memory of the pain.  But, if and when it returns, I know I can always circle back to the things I learned.

So I’m not trying to tell you that my life is perfect now– far from it.

I just think some of the things I’ve learned might help you, too.

Central Sensitization, Chronic Pain, Creative Writing, eating disorders, Favorites, Inspiration, My Story, Sacroiliac Joint

Healing our bodies, and the things that ripple across generations

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A little over a year ago, I started a second blog to focus on what I’d come to think of as this weird hip problem I’d had for years that no one seemed to understand (sacroiliac joint dysfunction).

Among friends, I usually tried not to talk about it too much, because I didn’t think anyone else would want to hear about it.  Sometimes I wondered if it was all in my head, since so many of the doctors and physical therapists I’d seen didn’t seem to know what I was talking about.  I was embarrassed to tell people about it, since only my chiropractor seemed to believe it was a real problem (and you know how skeptical I am about most things alternative health).

I started My Sacroiliac Joint Saga one warm day in May.  I’d had an absolutely awful day, and was just about reaching my breaking point with this problem and thinking I might need surgery.  I didn’t really think anyone would want to read what I wrote, but I left it set to “public” just in case.

But a funny thing happened.  Once I actually gave myself permission to focus on the issue, instead of judging myself for it, I found I had a lot more time to problem solve.

I used the mental energy I’d once devoted to questioning myself instead to research the problem from every possible angle.  Not everything I read was helpful to me, but by giving my full energy to the problem, instead of wondering if I was crazy, I ended up finding the answers I needed.

And it turned out there were people out there who were familiar with this problem– patients who had experienced it themselves, and doctors and PT’s who treated patients with it, and were even contributing to research on the problem.  I just hadn’t had the luck to come across any of them.  Looking back, I think the reason why is that I stopped searching too soon.

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Last spring, I wrote a post called “Inner Limits,” about how I was coming to realize my past with an eating disorder was haunting me more than I knew.

Internally, I had set certain limits for myself on how much time or energy I was willing to spend focusing on fixing a “problem” with my body, and so I held myself back.  I did my exercises, I went to the chiropractor once or twice a week, I maybe read one or two articles a month on it, but that was it.  Other than that, my main focus was sticking to my routine, as if pretending I didn’t have a problem could somehow limit the effect it had on my life.

But really, as I wrote in the post, there was more I could do.  I could do more exercises; I could do more stretches.  I could spend an hour a day researching, if I really wanted to.  I had the time… for some reason, I just wasn’t.  Because I was afraid to devote my full attention to it.

Funny, right?  Here I’d been working on this blog about my journey with central sensitization, and how much it took me to find answers for it, and how for so long I’d felt misunderstood when I had a legitimate medical issue.   One of the main messages of Sunlight in Winter has always been “Believe in yourself.  Your pain is real and you deserve help.”

And yet here, the same patterns were playing out with my sacroiliac joints.  Deep down, despite what I’d already been through, part of me was still afraid that if I fixated too much on my body, and trying to “change” it, it would trigger the same level of obsession that drove my years of starvation and overexercising.  So I held myself back.

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I haven’t written much about my family history on this blog, and I probably won’t say more than this anytime soon.  But in the past few years, I’ve come to realize that some of these thought patterns of self-doubt didn’t start with me.  Often we learn them from somewhere– usually, consciously or not, from our families.  These patterns can be passed down, and I think they very much were in my case.  There were things that happened in my family long before I was even born, that sent out ripples across generations.

I realize now that I have been on a long road– not just with my health, but with learning to believe in myself; to trust myself.  There were events that occurred in my family, long before I existed, that have affected my life and my ability to believe in myself.

Now that I’m aware of how the past has been affecting me, I’m learning to see things differently; to create my own future and way of seeing things that’s healthy, and works for me.

I won’t always be able control what my body does (I’m sure anyone reading this blog can relate to that!).  But I can control the way I see myself, and I don’t have to let health issues affect my self-perception.  Just because a doctor can’t give me an answer for something, it doesn’t mean the problem is in my head.  It doesn’t mean my problem isn’t real.  I can’t make a problem worse by “dwelling” on it when what I’m actually doing is researching and trying to find answers.

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I don’t believe that everything happens for a reason.  I believe that, most of the time, the best thing we can do is to try to make meaning out of something for ourselves, whatever that turns out to be.

I don’t know if all my health issues happened for a reason, but now that I look back, I  know this common thread was there all along.  Compartment syndrome, central sensitization, sacroiliac joint dysfunction.

All of these problems were real; all of them were hard to get diagnosed, and hard to find the right treatment.  But for each problem (and I know I’m fortunate in this) there were eventually answers out there.

I know this is not true for everyone who writes under the “Spoonie” banner, but for me, my major health issues have all turned to be manageable.  There were answers out there, and I probably would have found them sooner if I had taken myself more seriously, and believed in the possibility of finding answers.  Or, I should say, the possibility of being understood.

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Over the past weekend, My Sacroiliac Joint Saga hit 10,000 total page views.  I still can’t believe this blog I started a year ago as a somewhat embarrassing side project has grown to this extent, and helped so many people.  (And I know this because of all your kind comments and messages– thank you!).

And, aside from page views, 2016 Me still can hardly believe how fortunate I’ve been to finally find answers to this problem.  When I was at my breaking point that day in May, getting better wasn’t something I could really even picture.

So let this be a reminder to me, and to you if you’re reading this, to never let our health issues change the way we see ourselves.

We are so much more powerful than we realize… we just have to be able to see it in ourselves.

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Central Sensitization, Chronic Pain, Creative Writing, My Story

Being okay with uncertainty

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When I first started this blog, I was angry.  I never wrote about it, because I didn’t want to bring people down, but I was sick and tired of trying to explain my health issues to the people in my life, and feeling like they didn’t believe me.

Maybe you can’t see the anger, because you aren’t me.  But when I look back and read my earlier posts, I see the it in between the lines, in the way I wrote.  How sure I wanted to be of things; how determined I was to prove that things were, in fact, the way I understood them to be.

The funny thing is that now that I’ve taken more and more science classes, my perspective has changed.  The more I know, the more there is I realize I don’t know.  And the more I’m actually okay with that.

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For example, one of the things I’ve written about from time to time is how researchers are beginning to use brain imaging to study chronic pain, and even to develop new treatments for it.  This is, of course, super promising research, and I’m really excited about it.

However, one of the first posts I wrote about it, I’ve since had to significantly edit.  That original post was about how I hoped that, someday, doctors would be able to use brain imaging to “test” people for pain hypersensitivity, and prove that they had central sensitization.  This, I imagined, could be used to validate patients’ disability claims, or prove that they weren’t faking it.

The more and more classes I’ve taken– and I’ve had some really great professors, who went into the ethics of research– I’ve come to realize why using brain imaging as some sort of test wouldn’t be ethical.  The body is too complex; our testing too imperfect, to allow it to be used to potentially deny someone treatment.  People with legitimate pain could still fall through the cracks.  That’s why these brain scans should probably only be used for research and developing treatment.

That’s just one example of how my perspective has changed– knowing that we may never have a definitive way of proving who is in pain or not.  I’m more comfortable with uncertainty now, because I’ve learned so much more.

I have a much better sense of where we stand now with scientific research and where we are going.  I’ve also made a lot of changes in terms of the people I choose to have in my life.

So from where I stand now, the idea of not being able to “prove” myself is no longer one of my biggest fears.

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Something I’m learning is that you can learn a lot about people by looking at what they choose to emphasize.

For example, I once had a roommate who’d been bullied for being overweight as a child.  Of course, as an adult, this person was obsessed with clothes and makeup, and never left the house, even to make a quick run to the store, without making sure she’d done her full beauty routine.

And maybe it was the same with me– in my anger, I needed to formulate some sort of certainty about central sensitization and chronic pain, because it gave me a sense of the stability that I was lacking.   Maybe that’s why the idea of a “test” appealed to me– it offered what I wished I could provide to the people in my own life: unequivocal proof.

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Of course, I still believe in learning about central sensitization.  No question; that is what has most empowered me.  Knowing what the problem is, and naming it: to me, that’s the first step on the road to healing.

What I’m really remarking on is the paradox: the more I know, the more I am okay with what I don’t know.

I no longer need to prove anything, so not having all the answers doesn’t scare me anymore.