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.
For some reason, during my first visit with my new allergist at Beth Israel (one of the major medical centers in Boston), I’d gotten the impression that my diagnosis was absolute.
However, I’ve since met with her two other times, and apparently my clinical picture is not as clear-cut as it had seemed at the first visit. (Or, perhaps I misunderstood something at that first visit when I was busy trying not to burst into tears).
Things are a bit more calm now for me, and I’m starting to piece a lot more of the facts together.
I thought I’d share them with you here. Although I’m really upset that any of this happened, in a way I am proud of myself for the way I handled it.
As some of you know, part of what took me so long to recover from SI joint dysfunction was the fact that I didn’t believe in myself; didn’t believe that there were answers out there for me.
So when I got “I don’t know” for an answer from a doctor or a PT, I sort of internalized that as a reflection on me. That I had a “weird” problem, one that no one else could understand. So I’d let a lot of time go by after one thing failed, before trying something new.
I’ve learned from that experience, though, and now I am like a totally different person.
For now I will spare you the details of some of the indignities I’ve faced. Other to say that, because some of my symptoms have been atypical and don’t necessarily fit the classic signs of an allergic emergency, people have been downright rude to me. By this, I mean emergency room staff and even…. quite surprisingly, my new primary care doctor, who I had really liked.
But I stuck it out. I had my regular allergist at a small local medical center near me who believed that something really was going on with me, but that it was a bit more than she had the tools to diagnose. (That’s why she referred me to BI).
And the more I’ve met with specialists– the allergist and also two dermatologist, because a lot of my symptoms have involved strange rashes/hives/things going on with my skin– the more I’ve been affirmed.
The same spots the ER doctor told me were “nothing,” all three of the specialists confirmed to be hives. It’s just that they can look different, on different people.
This has really just been such a brutal time. I don’t understand why people would treat me with suspicion. After all, it’s not like allergic reactions come with any fun drugs. It’s not as if I’d gone in there asking for painkillers (although I would of course still be upset at being treated this way, and rightly so).
But allergies? I don’t know. I don’t get it.
Right now, though, I can’t control other people. I can only control myself.
So right now I’m trying to take control of the situation as much as I can.
Part of the uncertainty, I realized, may come from the fact that there’s a disconnect between dermatology and allergy.
While I technically have “hives,” hives are not always a sign of a dangerous allergic reaction. I’ve been learning that sometimes they can also be part of a much smaller chemical signalling pathway that has only to do with the skin. So, while I may still have mast cell, it’s been a huge relief to know I don’t have to freak out every time I scratch an itch and end up with a hive (this is part of a non-dangerous condition called dermatographia).
So I’ll be going back this week, to dermatology and allergy. I’m going to ask my doctors to communicate with each other about what they’ve found.
And maybe I don’t have mast cell activation syndrome. It’s still too soon to say for sure.
But right now I am proud of myself because this time around, I’ve internalized nothing.
If those ER doctors don’t get it, well, forget them.
At least that’s the one good thing that’s come out of this, as well as my weird chiropractor paralysis episode.
A younger me would have thought there’s something wrong with me, for having problems other people don’t understand.
Now nothing slows me down. When people dismiss me, I bounce back and fight harder.
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’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.
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.
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:
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).
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. :)
Technically, I suppose it’s bad form to brag about how much traffic you’ve been getting on your blog.
However, I feel like it’s a little different when a positive message comes with the bragging, so I wanted to share some of my updates with you all.
I’ve come so far from where I was when I wrote my first post about the sacroiliac joint. Despite everything I’d already been through with central sensitization and learning to believe in myself, I still had trouble taking myself seriously when it came to the SI joints.
I mean, I remember why I thought that way, when none of the doctors or physical therapists I saw seemed to know what I was talking about.
But now I know from running my blogs, and hearing from all of the readers who’ve shared their stories with me, that I was far from alone. I’ve been hearing from so many different people, and I think it’s safe to say that just about everyone who struggles with SI joint dysfunction feels this same way at first.
So, a big thank you to everyone who’s shared their story with me. Technically, you’ve been reaching out to me for help, but in the end, I think I’ve benefited as much as you. It’s meant so much to me to know that I was never alone, either, and that the topic I was so afraid to write about is now the topic that’s getting me the most views.
In that spirit, I wanted to share my traffic stats from February with you. My traffic over on My Sacroiliac Joint Saga has been increasing each month, and in February it hit an all-time high, of over 15,000 views.
While I wish Sunlight in Winter got anywhere near this much traffic, it just goes to show how many people there are out there looking for information on SI joint dysfunction.
I wish I could show you all of the meaningful emails I’ve gotten, but since I keep all my messages confidential, these numbers will have to do.
But to me, sharing these numbers with you isn’t about bragging– it’s about proof that good can come from sharing the parts of your story you think no one will want to hear.