A groundbreaking new study paves the way for future treatments for fibromyalgia

Hey everyone!

If you’ve been following my blog for a while, you’ve probably seen this absolutely incredible TED talk by Dr. Elliot Krane, on the nature of chronic pain.  It is seriously one of my favorite things to watch.  Chronic pain is terrible, but it’s always so hopeful to me to keep track of how much we’re learning through scientific research.

One of the things Dr. Krane mentions in this talk, which was back in 2011, is the role of a type of nervous system cell called a glial cell in chronic pain.

For a long time, scientists didn’t think glial cells did that much, in terms of affecting our overall function.  Instead, glial cells were believed to provide a supportive rule, providing support and nutrients to other types of cells within the nervous system.

However, a new line of research has been identifying the fact that glial cells actually do way more than we give them credit for, in their own right.

Fast forward to 2018: turns out researchers at Massachusetts General Hospital as well as the Karolinska Institute in Sweden have just published a groundbreaking new study on the role of glial cells in chronic pain.

For this study, researchers used brain imaging techniques to test for the level of TSPO, a chemical related to the activity of glial cells, in several different parts of the brain.  They compared the level of this chemical in the brains of patients with fibromyalgia, as well as the brains of healthy subjects for comparison.

Not only did they find that fibromyalgia sufferers had much higher levels of the marker, but they also found that the amounts of this chemical present– and therefore, the level of glial cell activity– was actually correlated with the amount of fatigue reported by patients.

This is super fascinating because it shows that glial cell activity plays a role not just in our perception of pain and pain sensitization, but also in the debilitating fatigue that many fibromyalgia sufferers report.

Because a study like this is able to demonstrate this link so clearly, that opens the door for researchers to further investigate drug therapies which can target the glial cells, meaning we will someday have more options for chronic pain.

You can check out the original study here.

I am excited about this, so I wanted to be sure to pass it on.

Happy Monday to you all!

I do have mast cell activation syndrome.

Hi everyone!

First of all, I’m sorry for some of the posts that have seemed to go back on forth on whether or not I actually have Mast Cell Activation Syndrome (or MCAS, for short).   First of all, I don’t want to have it.  Secondly, it’s been kind of hard to get a straight answer out of the first specialist I’ve seen about it.

However, since then, I’ve seen a few more specialists (including one world-famous one– I somehow got in after being on her waiting list for only a month, even though technically she’s booking a year out for new patients!).

So… what it comes down to is that, yes, I do have mast cell activation syndrome.

What is it?

Essentially, mast cells are a critical part of our immune system.  In the case of a “normal” allergy, when something we’re allergic to triggers the mast cells, they are what release all of the chemicals responsible for the subsequent allergic reaction.

This can be relatively mild, in the case of, say, a pollen allergy.  Or it can be life-threatening, in the case of a food allergy.

Mast cell activation syndrome, however, is much more complicated, because the mast cells are overactive.  So, they release their contents way too often, in response to seemingly-random triggers, including foods, medications, alcohol, and even exercise,and stress.

This diagnosis is really terrifying, at least at first, because basically, you learn that you’re at risk for anaphylaxis (a potentially life-threatening allergic reaction) and you might not even know what the cause was.

It’s different from a “regular” allergy because your mast cells can freak out even if it’s something you aren’t technically allergic to.

For example, I now get hives on my skin after eating certain foods… even if it’s foods that I’ve been tested and shown not being allergic to.

It sounds crazy, right?  I know.  That’s what I thought, too.  And that’s still how I feel, most of the time, when these symptoms are happening to me.

At first, after learning about this, I was in a very dark place.  I joined a bunch of Facebook groups with other patients to learn more about the disease, and although I learned a ton, I was also very, very scared by what I read.

Since meeting with two specialists who are way more familiar with mast cell than anyone I’ve seen previously, however, I’ve been feeling a bit better.  I’ve learned that there are people who find a way to make the condition manageable… or even to make it go into remission.

The other thing I really, really struggled with at first is “Why me?”.  Why, after everything else I’ve been through, would I develop another weird and debilitating health condition?

But, the more I learn about it, the more I think it actually makes sense.  People tend to develop MCAS after a very stressful or traumatic period in their lives.  Often, it can be what is known as “secondary MCAS”– triggered by another health condition that causes the body to freak out.

And the good news is that, according to Dr. Castells (one of the specialists I’ve seen), often when you can treat that initial trigger, you can actually make the MCAS go away.

I do not know what my initial trigger was, exactly, but I have a very strange feeling that my MCAS actually first started a few years ago, albeit on a much more minor scale.

It started when I was around 30, and still dealing with SI joint dysfunction.  My entire life was on hold, and I could barely walk.

Most of the time, I managed to keep my head up and not be too stressed out about the impact SIJD was having on my life.  But for some reason, around the age of 30, a bunch of things all went wrong at the same time.  Some of the people who’d been the most important to me– not just my family but also a few close friends– also seemed to lose patience with me, and the fact that I wasn’t getting any better.

I don’t want to go too much into detail about this at right now (maybe in a subsequent post) but something about losing the support of several people who I’d really cared about had a devastating effect on me.

Actually, it was traumatizing– I know that’s a strong word, but I think many of you with a chronic illness or disability will be able to relate.

Because I wasn’t a healthy, fit person who could take care of herself.  I was someone who could barely walk, and at the time, still didn’t understand what was happening to her.  It was very, very scary to try to move through life not knowing when my hips were going to do this mysterious locking thing, and I wouldn’t be able to move normally.  It was also really difficult, emotionally, to have this problem no one else seemed to understand (I hadn’t found any of my good PT’s and doctors yet) and so to lose the support of people who had been there for me was devastating.

And that is when my allergies started.  Or, at least, what I thought were allergies.

I’ve written about them before.  I even had started another blog about them, which I hadn’t had time to really get into yet.

But now that I’ve learned more, and look back, I don’t think what I had was just allergies.  I think that was actually the beginning of my mast cell activation syndrome.  Because, although I only tested positive for allergies to dust and mold, I was freakishly sensitive to everything.  

Every place I lived, something was wrong and I couldn’t breathe.  I even lived with roommates who were also allergic to dust and mold, yet I was the one who was always suffering.

I tested negative for being allergic to cats, yet often times, I’d try to pat someone’s cat and find my nose was itching and my eyes were watering.

Now it actually does all make sense.  Yes, I am allergic to dust and mold, but there is also another layer entirely going on, making everything more intense.

So… for now, I am doing my best to remain optimistic.

A big turning point for me, even before I met Dr. Castells, was when I read her interviews with Yasmina, the Low-Histamine Chef.   That was when I learned how much diet, exercise, and lifestyle could affect mast cell disease, and possibly even make it go into remission.   (Click here for the interviews: Part 1 and Part 2).

I’ve also been to an in-person support group (the Massachusetts chapter of The Mastocytosis Society— mastocytosis is another disease that’s very similar to MCAS).  At that meeting, I met people with MCAS and mastocytosis who had managed to make it go into remission.  It was really great to get support and to see that people had eventually found a way to make these diagnoses manageable.

One of the reasons mast cell disease is so difficult to get diagnosed, much less treat, right now is because so few doctors are familiar with it.  Mastocytosis has been known for a few decades, so more doctors are likely to have heard of it.

However, mast cell activation syndrome has only been much more recently recognized– in fact, a small working group of doctors only first came up with a name for it in 2007.  Here we are in 2018 and still, many in the medical field haven’t even heard of it.   Apparently, it’s even still controversial among some allergists (like so many of the medical conditions we now understand today).

So… I am still going.

It took me a while, to get up the resolve to pick my head up and even try to move forward.  But hearing the stories of others, as well as better understanding the roots of my own condition, have helped me to make a lot more sense of it.

I’m reminding myself that I’ve been through other health scenarios that once looked totally hopeless, and somehow, I found a way out of them.  So I’m going to do my best to make that be the case here.

I’ve converted my “allergy” blog into a blog about mast cell activation.  It’s actually still in “rough draft” form, where I’m taking notes just for me.  This is actually how My Sacroiliac Joint Saga began, at one point in time.

But starting my SI joint blog, even when it was just for me, taking notes, ended up being the very key to finding my path toward healing, as it put me in the mindset to keep learning and taking in information.

So I’m going to put all the lessons I’ve learned from managing past health conditions to work here, too, and we’ll see how far I get.

I didn’t need one more thing to write about.

If you follow my Facebook page, you may have already seen the news…

Yesterday I was diagnosed with something called mast cell activation syndrome.

It’s taken me a long time to figure out what’s been going on. It all started with a severe allergic reaction back in August.

Unlike most people who experience a severe allergic reaction and then (assuming, hopefully, they were able to get the proper treatment in time) recover from that one episode, for me, that incident seems to have set off a chain reaction where my body is becoming more sensitive to triggers, over time.

It’s kind of similar to central sensitization, actually. Both our nervous system’s ability to send pain signals, and our immune system’s chemical messengers, are there to protect us.

However, in both cases, the two processes have gone overboard. In central sensitization, the nervous system becomes more “effective” at sensing pain.

And in what I have, mast cell activation syndrome, my body’s mast cells, which I need to release histamine during an allergic reaction, are not able to calm down afterwards.

I’m still learning about this condition — I went to see the specialist yesterday hoping to find out I didn’t have it.

But I do. The more I read about, and patient stories I hear, the more I know I do.

Essentially, my mast cells are still releasing high levels of histamine, even though the initial reaction that triggered them was over a month ago.

Having high levels of histamine can trigger a wide range of symptoms. The more minor are itchy skin and rashes. At the other end of the spectrum are all of the symptoms of a severe allergic reaction, including airway swelling and a dangerous drop in blood pressure (these life-threatening symptoms are part of an extreme reaction called anaphylaxis).

I now have an epipen which I expect I’ll have to carry with me everywhere for the rest of my life. I guess it’s similar to living with a food allergy — except, to my knowledge, I don’t have any food allergies.

MCAS is scary in it’s own right, though, because the triggers can be impossible to predict. The same thing can be fine one day, and trigger a reaction the next.

From the reading I’ve done so far, it seems like many sufferers have to keep a running tally of all the activities they perform, and foods they eat, which could cause a rise in histamine levels. It’s possible that although a food or activity on it’s own could be benign, if you add them together the body reacts.

That’s another thing. Intuitively, I had decided not to exercise at all since this happened. I’d learned, when I considered allergy shots last year, that exercise can trigger anaphylaxis.

The new allergist I saw yesterday confirmed that my hunch was correct, and asked me to continue not exercising for the time being (we’ll see what kind of effect this has on my SI joints!).

As devastated as I am to receive this diagnosis, at least the doctor yesterday validated much of my experience.

I had known, instinctively, that my body just needs to calm down right now. That I shouldn’t exercise, and that I need to avoid contact with my allergens.

I have certainly had emergency room staff be rude to me when they didn’t understand my symptoms.

I told my new allergist yesterday about some of the things people had said, and she rolled her eyes and said “That’s so stupid.”

So… I’m not happy to receive this diagnosis. But… the problem was already happening. At least now I know what it is. My allergist thinks MCAS is behind many of the extreme allergies I’ve had, even before this, and I think she is probably right.

So… it is life-threatening. The degree to which it will impact my life, on a day to day basis, is still unknown.

Anyone who knows my story knows I really, really didn’t need one more complex health issue to write about.

But I’ll do what I always do. Keep researching, keep writing, and keep moving forward.

I hope you are all doing well.

For more on MCAS:

https://www.healthline.com/health/mast-cell-activation-syndrome

https://tmsforacure.org/symptoms/symptoms-and-triggers-of-mast-cell-activation/

https://www.mastcellaction.org/about-mcas

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

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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:

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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).

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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.

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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.

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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.

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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.

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