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.
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.
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:
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. :)
I recently heard from a reader who was looking for some suggestions on where to turn next, in terms of finding a medical professional to help him. He said he’d been struggling with central sensitization syndrome for three years now, and had yet to receive any significant help.
I thought his advice might be useful for many of you, so here’s what I said.
First, I recommended he watch this incredible video from Dr. Sletten of the Mayo Clinic, talking about the various causes and symptoms of CS.
Basically, this video is so awesome, I cried the first time I watched it. Not, of course, because it was so awful, but because it made me feel validated in a way I truly wasn’t expecting.
In the video, Dr. Sletten explains how central sensitization impacts our body’s ability to process certain types of information.
In other words, it takes all of these normal, everyday bodily sensations that our nervous systems depend on in order for us to survive– and it turns the intensity WAY up.
On my blog, I have written about this the most in terms of pain. You can feel a light touch on your skin, and have it be excruciatingly painful. Your nervous system is magnifying the sensation.
But there are many other types of stimuli and sensations that our nervous systems can experience more intensely. Noise, in my experience, can be a big one. If someone’s making noise– say, doing construction on the building next door, it can really throw me off and ruin my entire day. It’s like I just can’t block it out.
Heat, to me personally, is another one. I’ve been thinking about that a LOT recently, as we’ve had a wave of 95 degree July weather here in Massachusetts. It’s like… other people can sort of brush it off. With me, it’s like it heats me up to my very core and I just can’t think clearly. (Then I start to experience anxiety, which has been TONS of fun!).
So… back to our main topic.
This reader wanted to know if I had any suggestions for how he could look for help. (He didn’t give me any specifics about his symptoms, or what exactly he’d already tried). So here is my answer, written for a general audience.
It would be really great if you could find help in one place.
For example, the video from above is from the Mayo Clinic’s Pain Rehabilitation Center in Florida. This type of a program, ideally, is geared towards helping people with complex pain problems.
If you have the option of attending such a program, I certainly recommend it! However, this type of program is few and far between, and I’ll be honest with you– I think a lot of other pain clinics have a ways to go, despite how good they look on paper. (You can read about my disappointing experience at a pain clinic here in Boston a few years ago).
So, while I certainly don’t want to discourage anyone from seeking out help where appropriate, I want this post to provide additional options for people for whom that isn’t an option (or it didn’t work).
What I personally did to manage my symptoms was to work with the appropriate specialist to address each set of symptoms I was experiencing. Here are some examples, for symptoms that are common in people with CS:
Musculoskeletal Pain
The person who helped me the most with my chronic pain was actually a PT. He truly changed my life. He had advanced training in something called pain neurophysiology education, which taught me to view my pain as something that was there to protect me.
As a result, I learned to work with my nervous system, not against it. I developed a much better sense for when it was okay to push through the pain, and when I really had no choice but to sit and rest. PNE can’t take away all your pain, but it can help you learn how to work around it (which dramatically reduces the cycle of having setbacks).
There’s also a type of specialist called a physiatrist who specializes in musculoskeletal pain. Physiatrists work in the specialty Physical Medicine and Rehabilitation. Basically, they specialize in all of the ways to treat musculoskeletal pain, and they are trained to look at the whole person, rather than focusing in on one body part.
A physiatrist may ask you about your daily life, and how your sleep is. They may offer you medications such as Lyrica or Cymbalta (see below). They may also offer different types of injections, such as trigger point injections, to help with muscle tightness. In general, they can help you think of solutions you may not have thought of.
Other, non-musculoskeletal symptoms
There are definitely other symptoms and conditions that can be caused by central sensitization. Again, let’s remember that with CS, you’re taking what would have been a normal, helpful bodily sensation and making it extremely intense.
Digestive System
One type of sensation that can be intensified is in your digestive system– what’s commonly known as irritable bowel syndrome.
If you’re having these symptoms, it’s really important that you follow up with a gastroenterologist, to make sure there isn’t anything else going on that could be causing your symptoms.
It may be easy, for example, for your primary care doctor to tell you that it’s stress, or that it’s irritable bowel syndrome, but really, you want to talk to an expert, to make sure it isn’t anything else.
If your GI doctor doesn’t find anything else going on, then it’s time to look into solutions. There are a wide range of treatment options out there for IBS– there are medications you can take, and you can work with a nutritionist to eliminate dietary triggers. Stress, of course, is a bigger trigger and it’s important to learn how it affects you. But keep in mind that it is not the only factor, which is why you should investigate all of your options.
Bladder
Another sensation that can be intensified is the sensation that your bladder is full. This is one of the potential causes of a condition called interstitial cystitis, which many people with CS/fibromyalgia have.
However, there are other potential causes as well– an issue with the lining of the bladder, or a possible bacterial infection.
So again, it’s important to consult with a specialist (in this case, a urologist) to make sure you aren’t missing something bigger.
Headaches/Fatigue/Dizziness
These are also some common symptoms of CS/fibromyalgia. However, like everything else, it’s really important to make sure that’s all it is, and there isn’t anything wonky going on in your nervous system.
Your primary doctor, of course, will be the one to direct you where to go in all of these cases, but just to give you an idea, these symptoms would probably be good to check out with a neurologist.
What you will likely find is that all of these specialties will be familiar with CS, as it relates to their own system of the body.
Each specialist may use slightly different terminology, or explain it to you in a different way. A physiatrist will be talking to about pain. A gastroenterologist will be talking to you about different types of sensations, as will a neurologist.
But ultimately, these are all different ways of looking at the same thing– the fact that your nervous system is processing information differently than it used to.
So… it isn’t really possible to get help for all of your symptoms from one person. Because you need to get the information from a specialist.
There is no one specialist you can see who’d be able to rule out other potential problems in your joints, in your digestive system, in your bladder, etc. You have to go to someone with specialized knowledge, for each of these different types of symptoms.
So, in the end, I think the most important thing is that you have a supportive and thorough primary care doctor.
You will need this person on board to direct your care, write referrals, etc.
I have recently had an epiphany that there are probably better primary care doctors out there than the one I was seeing.
Fortunately, that never stopped me from seeing all the specialists I needed to. It’s not like my doctor was going to say no, and refuse to write me a referral if I said I was having a problem.
However, I am currently in the process of seeking out a new doctor, because our knowledge base is changing all the time. And because, of course, I’d prefer to have a doctor who actually believes me!
But I know what it’s like to struggle for answers, and not know where to go for help.
I wrote this post for you, if you’re in the same boat. Hopefully I’ve given you a good idea of how you can work within the framework of the health care system to get help.
For more ideas, you can check out the following post. It’s actually an old post, but I just went back and re-worked it before I answered this reader. It has a little more detail on various treatments:
Wow… the past few months have been full of changes for me! There’s been a lot to deal with… but at the same time, I’ve been learning from it, and figuring a lot out.
I don’t always feel inspired to share super personal stuff on this blog, but I’ve heard from a few readers — including a few friends from real life, who decided to check out my blog– who reminded me that sharing these personal details can really help others. So I feel moved to share some of my epiphanies with you all, for whoever may see this.
The girl I was speaking with, Jess, is a nurse at a primary care office. We had never met before but she was just one of those really caring, empathetic people who’s easy to talk to.
I found myself opening up to her about my story– my health issues, chronic pain, the SI joint.
“Do you have fibromyalgia?” she asked me, stopping me in the middle of my story.
“Well, no,” I answered. “Not really. I have some of the symptoms, but no one’s ever really diagnosed me with it.”
She looked at me questioningly, so I continued.
“I mean, I don’t know, maybe I have it… I’ve just never really seen a doctor who seems to believe it’s a real thing. My primary care doctor has always thought it’s in my head, and that I’m depressed.”
Now I really had her attention.
Her eyes widened and she said, “We see people in our office with fibromyalgia all the time. It’s not an uncommon diagnosis. Just because your doctor doesn’t believe it’s real, doesn’t mean you don’t have it.”
Somehow, Jess was about to put the entire past ten years of my life into a different perspective.
She continued, “You know, just because someone has a medical degree, it doesn’t make them the be-all, end-all authority. They’re just people. You have to listen to yourself. You deserve help. Maybe there’s a better doctor out there for you.”
I was just honestly floored by this.
Jess started telling me how the doctor she worked for not only believed that fibromyalgia was a real diagnosis, but was willing (and confident) in treating patients with it herself. Whereas my former PCP responded that it “had to be” a mental health issue, this doctor actually prescribed medication. Not for depression or anxiety, but for fibromyalgia itself, as its own diagnosis. And how this doctor believed her patients, and had sympathy for them and their struggles.
I couldn’t believe what I was hearing– it was like Jess was describing another world.
Since then, I’ve been reading more recent, up-to-date articles on fibromyalgia… and I think Jess is right.
I think I do have it.
I’m not sure why I’ve always thought of my chronic pain issues as separate from fibromyalgia. I think there’s a combination factors– the biggest of which, of course, is I’ve never met a medical professional who believed it was real.
I don’t know why this is. I seemed to have bad luck, getting one doctor after another who believed chronic painhad to be linked to mental health.
I want to be clear about the fact that I have found significant relief through pain neurophysiology education, which I talk about on this blog.
It’s a special form of physical therapy that teaches chronic pain patients how to work with their nervous system, rather than against it. It’s an amazing way to reduce the cycle of chronic pain. I can honestly say that my physical therapist Tim, who studied with pain researcher Neil Pearson, is the only medical professional who ever truly understood my pain issues.
But Jess made me realize that maybe I do deserve to have doctors treating me, who actually believe in me.
You know what? I still have pain. (Pain neurophysiology education never promises to completely erase your symptoms– only to help you live with them).
The 95 degree heat we’ve been having here in Massachusetts knocks me out, seemingly more than other people. And I have other symptoms associated with fibromyalgia, as well. Maybe I do actually have it.
Maybe it’s a little bit ridiculous– and unnecessary– to go it alone.
Ultimately, I almost think it’s a lack of self-compassion that’s kept me from trying harder to find a doctor who believed in fibromyalgia. Despite everything I knew intellectually about the science, on some level I had sort of internalized the idea that I was a “weird” case, or a “mental health case,” because that’s how my former primary doctor made me feel.
Looking back, I think I accepted the idea that there was no one who could help me, way too soon.
However, seeing how my former doctor reacted to my chiropractic scare really put things into perspective.
As I wrote about in this post, this experience helped me see her shortcomings a lot more clearly, compared to chronic pain.
When it was actually a question of my being paralyzed, or having damage to my reproductive organs, I saw how her inability to empathize, or actually acknowledge all of the symptoms I was presenting, actually had real world consequences.
So I switched doctors… and I’m so glad I did.
I’ll share more later about what I’ve been learning from my new doctor. But for right now, I really wanted to address this fibromyalgia question.
Because I’ve been going back and reading recent articles online, and I’m changing my perspective.
Fibromyalgia isn’t just one symptom of central sensitization… it is central sensitization.
“Researchers believe repeated nerve stimulation causes the brains of people with fibromyalgia to change. This change involves an abnormal increase in levels of certain chemicals in the brain that signal pain (neurotransmitters). In addition, the brain’s pain receptors seem to develop a sort of memory of the pain and become more sensitive, meaning they can overreact to pain signals.”
Yes, that’s me. That is what I have. I don’t know why I didn’t see it before.
Going forward:
I’m going to do myself a favor, and see myself as someone who legitimately has fibromyalgia and deserves help.
I have written this so many times on my blog. Believe in yourself, believe in yourself, believe in yourself. It’s a lesson I’ve had to learn so many times over, and am still learning. Unfortunately (or fortunately, depending on how you look at it), it’s a lesson life never seems to stop offering me opportunities to learn.
I’m not quite sure exactly what implications this has for my future treatment. I do think that, despite my lack of diagnosis, I’ve still tried most of the treatments available to fibromyalgia patients. (I’ve tried just about all of the medications, with no success).
But… who knows? Maybe something else is out there for me. And going through life answering “no” when people asked me if I had fibromyalgia was probably not going to help me find it.
So… that’s all for now.
I actually have a few other epiphanies coming up to share with you– it has been such an intense (but good!) time for me, learning wise.
So… I wanted to follow up my recent posts, which have been somewhat heavy, with a post to check in about some of the good things going on in my life!
I’ve always wanted to try doing one of those Friday round-up posts so many bloggers do, so I thought I’d give this a go.
First of all– it’s warm out! The days are getting longer! I can finally take my aquatic workouts outside!.
Everything about aquatic exercise becomes fun (and fashionable!) again.
Rash guard
One of my favorite aquatic workout items is a rash guard, like the one above. They’re technically made for surfing/paddleboarding/other water sports, to protect your skin from the saltwater and sun.
But hey… those of us in the water for rehab purposes absolutely deserve comfort and sun protection as well, especially when it’s not super warm out!
Summer is also the time when I tend to explore new exercises, and even come up with more of my own exercises.
It’s just…. you feel so much more free. I love my gym pool, especially when I can catch a 30-minute block of time with it all to myself at the end of the day.
But there’s nothing like being outside… it brings me right back to being a kid.
I really love the Aqua Jogger company because there are so many different things you can do with their equipment. Some of the exercises are geared more towards athletes rehabbing an injury than the chronic pain crowd. But I’ve actually been a member of both of those crowds, now that I think of it, and I really respect their brand. They offer a complete workout system, which no one else really does.
Meditation.
I’m currently renewing my focus on trying to be a more centered person. I find that when I make time to get in touch with myself at the core of my being, it’s like I remember there’s a deeper purpose to life. I feel like I always sort of know that, deep down, but often it gets covered up by the the hustle and bustle of daily life.
If you wanted to try out some different approaches, here are some free meditations, by the way, offered by the UCLA Mindfulness Awareness Research Center.
You can also check out the Calm app, which has a bunch of free meditations as well.
Group meditations
Additionally, something I really love is group meditations. While solitude can be really key, I think there’s also something to be said for joining in a group of people for a common, spiritual (if you believe that) purpose.
This is something I’ve really enjoyed in the past, and this summer I’ll be looking for groups in my area to get involved in.
Getting out and about
I wrote a post a few years ago on the “Little Things.” It’s about how, even though some of us might not be able to physically handle a vacation, or even a long day trip, we can still bring the mindset of a “vacation” to the things we have to do.
Running errands? Try driving a different route. You may pass something scenic you didn’t know was there.
Have a doctor’s appointment in a town you’ve never been to? Check out a local coffee shop afterwards.
This is something I try to do, whenever I have the opportunity. I’ve gotten in the habit of bringing my little touchscreen Chromebook with me wherever I go, in case I feel like sitting in a cafe and doing some writing.
So… life might not always allow us to have huge adventures. But that doesn’t mean the little things can’t add up.
What are you looking forward to about the summer? Do you find it makes your exercise routine easier? Let me know!
One of my favorite aquatic workout items is a rash guard, like the one above. They’re technically made for surfing/paddleboarding/other water sports, to protect your skin from the saltwater and sun.
I really love the 
