Heat, Fibromyalgia, & Central Sensitivity Syndrome (or, why I can’t handle being hot!).

img_81592
Favorite spot: right in front of the AC :)

Hi!  So.. I try to keep the posts on my blog mostly cheerful.   I always want my blog to be a place that reflects a sense of hope and healing, where people can come to feel uplifted.

But… I also blog to share my truth with people, and to connect.

And the truth is that I have central sensitization syndrome, or fibromyalgia (still working out which term I think is best).

I’ve been concentrating so much on writing my SI joint blog recently that I haven’t been writing so much about pain science, in general.

But the past few weeks, it’s been hot.  Really hot.

And now I’m reminded, on a personal level, how central sensitization really isn’t just about pain.  Instead, it’s about everything our central nervous system is responsible for regulating… and the fact that our ability to regulate it has been thrown off.

Something that should be so small, for another person… for people with central sensitization, it can be huge.

I’m about to tell you why I’ve been so miserable, and why, so far, I’ve spent most of the weekend just lying on my bed.

As I write this, I feel like what I’m going to say sounds so silly, so benign.  But this is the reality of struggling with central sensitization– our symptoms can sound ridiculous to other people.  They can even sound ridiculous to us.  But they are still happening.

So I will tell you that my apartment is too hot.  

I should spare you the boring details, but this post won’t make sense if I don’t explain that this is my first summer in this new apartment.  I don’t have central AC in this place, as I have in summers past.  I’ve been trying to get away with one small window air conditioner for my whole place, and it’s been an epic fail.

I know what I’m saying might sound ridiculous to the average person.  Because it’s not really a big deal, right?   Just buy another air conditioner and move on.

But for me, this situation is reminding me, so strongly, that I really do have a problem with central sensitization.

Because sometimes, my body doesn’t let me just “move on.”  It’s not just like I just noticed that I felt hot.  I’ve been exhausted.

I feel like I didn’t get any warning.  I didn’t just have some mild discomfort and then think “oh, I should probably do something about the fact that my apartment is so hot.”

Instead, it hit me like a ton of bricks.  Like a virus.

Originally, I’d wanted to wait and see if one AC was enough, before buying a second.  When it first started to get hot a few weeks ago, I thought I could just spend most of my time in the bedroom (my air conditioned room) and limit my time in the rest of the place.

But no.

As the summer’s gotten hotter, I’ve found that I don’t just get hot.  I get exhausted, quickly: I can’t think clearly.  I go on anxiety spirals.

I’ve constantly felt like I’ve been coming down with something… but I haven’t actually gotten sick.

If I leave my air conditioned bedroom and walk into the 82-degree living room for 5 minutes, I get dizzy.

This is crazy, right?  I know it sounds crazy.  It doesn’t make sense!   

But that doesn’t mean I’m not also experiencing it.

I noticed that if I retreat back to my 74-degree bedroom, after about 20 minutes, I’ll start to feel calm again.  My anxiety will go away, and my thoughts will become rational again.

But apparently, I really can’t handle even the back and forth to the rest of the apartment, even if I have my cool bedroom to go back to.

I know plenty of people who live this way, no problem.

And I know a few people who barely use their air conditioners at all.

I know that what I’m experiencing sounds extreme.  And yet, it’s happening.

I think it’s a heightened version of the way everyone gets tired, when they’re overheated.  It’s how our body protects us, by forcing us to stay still and keep cool.

Only my body is perceiving the walk from my bedroom to the kitchen as a threat to homeostasis– or, in other words, its ability to keep things regulated.

Research

Honestly, I was getting pretty upset, when I remembered to do what I always do, in the end: slow down.  Take a deep breath.  And do some reading.  Remember that there is a name for what I’m experiencing, and that I always feel better when I try to learn about it.

So I went back and watched my favorite video from Dr. Sletten at the Mayo Clinic:

I shared this video in my last post too…  I guess I probably can’t share it in every post (or can I?!).  But it really pulled me out of the depths of despair right now, so of course I had to share it again.  (Thank you, Dr. Sletten!  I’ve never met you but I feel like I’m your biggest Internet fan!).

This video is really the most reassuring thing I’ve found out there.

In the first screenshot, which I took at the 2:30 mark, Dr. Sletten outlines some of the various systems our body uses to maintain homeostasis:

img_85011

He explains, “If you’re too hot, you might to go to a place to cool off.  If you’re thirsty, you might drink some water.  If you have to go the bathroom, you go to the bathroom.”  These are all ways in which we respond to the input that our peripheral nervous system gives us, in order to take care of our body.

As he says, “The signal itself is not abnormal.”

The problem sets in when these signals get upregulated– meaning a stronger and stronger signal gets sent to the brain.

The somatosensory cortex is the part of our brain that processes all of these sensations coming from our body.  When these signals are upregulated, that means they’re stronger and more uncomfortable.

In the red marker below, you can see where he wrote a list of some of the sensations and triggers that can arise when the nervous system has been sensitized.  He included temperature as a potential trigger, as well as a change in barometric pressure (which I, personally, haven’t experienced, but I would imagine this would make people feel as crazy as I feel right now).

img_85031

So, honestly.. I don’t really know how to fix this.

I’ve come a long way in managing the chronic musculoskeletal pain aspect of this, using an awesome approach called pain neurophysiology education.   But that doesn’t mean that central sensitization is completely reversible (although new treatments are being researched every day!).

For now, I personally feel better if I can just learn about it.

To know there are other people out there going through the same thing, and that there are doctors and researchers out there who won’t think I’m crazy.  To know that it’s not “in my head,” although it is in my nervous system.

I just need to know this about myself.  I have symptoms of central sensitization, and one of them is that I don’t handle heat well.   Temperature is not something I can be too flexible with.

Does anyone else out there experience this?

I know this post was not my normal cheerful, upbeat post.  I’m genuinely curious if anyone else out there goes through this.

Dr. Sletten’s video helped me a lot, but if anyone else out there feels the same way, please let me know!

And, whether or not heat is a factor for you, I hope you’re enjoying the summer!

Me… I’ll be off to buy another air conditioner now.  :)

Related:

Grateful to be okay

Well, if there’s anything I can say I learned last week week (in addition to chiropractors are dangerous), it’s this:

How very, very grateful I am not to have a permanent nerve injury.

image

I guess that’s sort of the obvious thing for anyone to say in this situation.  But what really surprised me was that my biggest fear was not how difficult daily life was going to be if my nerve issues turned out to be permanent.

Instead, what scared me the most was that I might have to give up my chosen career– or, at least, not be able to do it in the way that I want.

It was sort of a reminder for me, in a way, of how much I really want to become a physical therapist.  Because in my daily life, I often get bogged down in the practicalities.  The few remaining prerequisites I would need to take in order to apply to certain programs.  Taking the GRE (again, that is– let’s not talk about how I scored the first time!).

Last Friday, I consulted a neurologist, and was very encouraged by what she said.  On the way home, I stopped in the town of Newburyport, Mass., which is always one of my favorite places to go in the summer.

I could feel my body telling me it was okay to move, that it was okay to start using my legs again.  So I walked around and took in the sunset, gathering my thoughts.

img_7301-2img_7309-3

And I was just sort of thinking of everything I’ve been working on so far– my classes, my blog, my Youtube channel (I have so many ideas for videos I mean to make!).

And of course, the e-book I’ve been working on– Exercises for the Sacroiliac Joint.  It will be quite a bit easier to get back into concentrating on that, now that the question of whether I’ll be partially paralyzed for the rest of my life has been taken off the table.

img_7302

As I have said before, I don’t necessarily think everything happens for a reason.  But as my friend Nicole told me once, “You can make meaning out of things for yourself.”

So there a few lessons I can draw from what happened:

1) I need to explore alternatives to chiropractic adjustments.  Who knows where this will take me?  Maybe I’ll discover something even better, something that will benefit my future patients and make me a better PT.

2) I have such a better understanding now of what it feels like to have nerve damage.  Before, it was something I only could imagine.  Now I have felt it– thankfully, only for about a week.

And 3) What a reminder of how much I really do want to do this.  I want to teach people, I want to educate (and thank God I’ll still be able to use my own body as a tool to do so with).

Sometimes I feel myself get slowed down by the demands of daily life, and the things I have to do just to get into school.   So in a way, it was quite the wake-up call to get in touch with the fear I had, at the thought it could be taken away.

So now, I am grateful to be okay, and it is back to business.

img_7327-1

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

 

Powerful female hormones, injuries, and pain

Something I’ve really come to notice during my time with SI joint issues is the effect of my hormonal cycle on my ligaments.

I saw a female pain specialist once who put it very plainly:

I have extremely healthy women come into my office– women who are runners, women who are training for marathons– and sometimes it seems like, during their period, all they have to do is bend over and tie their shoe, and they can throw their back out.

Why does this happen?

Basically, one of the hormones a woman’s body releases in the days leading up to her period is a hormone called relaxin.

As the names suggests, relaxin acts as a chemical messenger that tells our muscles and ligaments to relax.  Its main effect during childbirth is to cause the joints of the pelvis to become looser, meaning there is more room for the baby to pass through.

However, relaxin is also released during our menstrual cycle, beginning around day 14, so our bodies are prepared in the event that we do become pregnant.

And with more relaxin circulating in our bodies, our muscles and especially our ligaments are going to be a little more slack, meaning there is more risk for injury.

This article from BBC News outlines a few studies that have shown women are more likely to experience injuries in the second half of their menstrual cycles, due to higher relaxin concentrations.

***

I have definitely noticed this going on in my own body.  For me, it begins 3-4 days before I get my period, right when I get my other PMS symptoms.  All of a sudden, I’ll feel my SI joints start to move around a lot, because my ligaments are not holding them in place as tightly.

There were times when I’d have to promise myself, in those days leading up to and during my period, that I wouldn’t judge my overall progress by the way things were at that moment in time.  (I’m sure my plummeting mood didn’t help with my gloomy outlook, either).

I’d really have to talk myself through, and say, I know things really seem that bad right now, but your joints ARE doing better.  Just wait a few days and see.

And then, sure thing, once my period had passed, things would go back to normal (or at least, back to baseline anyway).

***

Since my SI joints are doing better now, I don’t notice quite the same extreme fluctuations in my level of function.  I have more muscle strength to hold things in place, and my ligaments have had more of chance to heal after my original injury.

However, every month, I can still feel things become a little looser, and my SI joints seem to have a wider range of motion (and not in a good way).

I also notice my hormonal fluctuations impacting other joints in my body as well.  I particularly notice it in my knees and in the joints of my fingers.  (That sounds totally random, but interestingly enough, finger joints were one of the joints that doctors studied, according to that BBC News article).

***

So, for my female readers, this is something to be aware of.

If you are struggling with chronic pain, it might be worthwhile for you to track how your menstrual cycle impacts your pain.

I honestly was totally unaware of the connection, until that doctor suggested I start paying attention.

Once I knew, it did make things a little easier.  I learned not to freak out if things felt worse during a certain time of month, and instead knew to wait, and that it would probably pass (which it did every time).

**

For more, check out this really informative article from Lindsay Matthews at Breaking Muscle on Relaxin: Facts Female Athletes Need to Know.

The BBC News article

I also just started using the Clue period tracker app.  It seems pretty easy to use so far.

A successful experiment with acute stress

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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