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

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

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

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

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

***

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

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

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

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

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

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

***

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

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

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

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

***

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

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

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

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

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

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

***

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

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

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

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

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

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

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

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

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

So I never did.

***

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

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

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

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

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

***

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

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

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

***

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

***

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

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

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

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

Hope this was helpful!

Learning about central sensitization: the power of naming, and the future of pain treatment

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Whew.

I have really enjoyed writing my more personal posts recently– I love to tell a good story, and to feel as though my past experiences have some meaning.  (And I’ve really appreciated all your kind words, comments, and shares!).

But also, wow– some of those posts were very emotional for me.  Right now I’m kind of feeling the need to come up for some air.

So let me back up for just for a minute, and talk about some of the things I’m optimistic about, in terms of the big picture in treating chronic pain.

The more we know about central sensitization and the way pain works:

It gives us the power to name things.  

This is something I’ve been thinking a lot about recently.  Sometimes, there is a healing power that comes just from being able to put a name to something; to receive a diagnosis, and know that you aren’t the only one.

As I explained in my last post, when I finally learned the term central sensitization, it helped me to feel validated, and so much less alone.

Sometimes healing can come not from completely “fixing” your condition, but from being able to make meaning out of it for yourself; constructing a coherent narrative that makes sense.

And of course, it’s much easier to make sense out of something when you actually know what it is.

Having an actual diagnosis can help us explain ourselves to others

At least, I assume it does.

As I have mentioned in past posts, the truth is that I have often struggled to articulate what’s happened to me in the people in my life.

Of course, it didn’t help that I didn’t really have an explanation that made sense for it myself, for most of the time, or that even now that I have an explanation, it’s a condition that’s still fairly unknown.

This is why I am doing my best to raise awareness and get the word out.

The more we, as a society, understand about pain, the more treatments we can develop.

There is just so much to say here.  The more I learn about pain, the more and more I realize I don’t know.  It’s really such a fascinating subject.  I try to talk about some of the highlights on my blog, just to give you a sense of how broad the subject really is.

But in a nutshell, our growing scientific understanding of pain can lead us to all sorts of new treatments, such as:

New pharmacological approaches: I’ve recently discovered Gracie Gean’s Youtube channel, and her story about receiving ketamine infusions to treat CRPS.  I totally recommend checking it out!

Brain imaging and biofeedback: I’ve written before about the work of Christopher deCharms and others at Stanford University, who use functional MRI to teach patients to mentally “turn the volume down” on their pain.

Pain neurophysiology education

And of course, once you understand that pain is one of your body’s protective responses– it’s actually there to keep you safe, not make you miserable– this can help you learn to work with it, not against it.

This is the premise of pain neurophysiology education, which I talk about in the “Calming Your Nervous System” section of my blog.

When I was in the midst of my struggle, I happened to find a physical therapist who had taken a PNE course with Neil Pearson, and that was the moment things really changed for me.

I learned to view my pain not as an automatic indicator that something was wrong or broken in my body, but as my body’s attempts to protect me.  And, each time something hurt, it was possible my body was overreacting, like a jumpy alarm system, or an overprotective friend.

This helped me to mentally take a step back when things began to hurt, and re-evaluate what I intellectually thought the pain was likely to mean.  And even just realizing that I had the ability to do this– that pain didn’t always have to mean something was wrong– helped me to begin to end the cycle I’d been caught in.

So, that’s all for now.

I’ve got a bunch of posts planned for the next few weeks that I’m really excited about.

I’ve also recorded a podcast interview with Matthew Villegas for The Capable Body Podcast about my experience with pain neurophysiology education.  Although I was afraid I sounded super awkward, Matt assures me the episode will be good!  It should be coming out sometime in September– I’ll be sure to let you know when it does.

Stay tuned!

 

 

What I really want you to know

I never know quite what to call the posts in which I share a video.

Every title I think of sounds either click-baity or boring.  Like for this one: “Mayo Clinic doctor explains central sensitization.”  “Awesome video on central sensitization,” etc. etc.

In this day and age… what do you call something that truly is a “must-watch?”  The term is so overused.

But I really, really want everyone to watch this.

***

Have you ever held something in for so long that, when someone finally validates the way you feel, you end up crying?

That was kind of how it was for me, with this.  This video was so great it actually made me cry.

I know a lot about central sensitization, but, honestly, most of that is from my own research.  (You can check out the articles and researchers I cite in my Resources section, particularly under “Scientific Articles”).

Of course, I’m grateful to have access to these articles, and of course, to the scientists who wrote them.  (Not to mention the education that allows me to understand them– big shout out to my neuroscience professor!).

But when it comes to understanding central sensitization as a scientific concept, there have been many times when I’ve felt pretty alone.

Maybe I shouldn’t feel this way, because, largely, I’ve found the answers I need– my life is so much better since I discovered pain neurophysiology education and the work of Neil Pearson (thank you again, Neil!).

But what I’m talking about is the emotional aftermath of what I went through in all the years before; all the time I spent feeling misunderstood.  All the conflicts and arguments with friends and family over the “weird” symptoms no one could understand… I have sometimes felt very, very alone in trying to articulate exactly what’s happened to me.

***

That’s a big part of why this video blew me out of the water.

Here, Dr. Christopher Sletten, who runs the Pain Rehabilitation Center at the Mayo Clinic in Florida, describes, in patient-friendly language, exactly how central sensitization can happen, and the myriad ways it can affect a person.

***

On my blog, I talk mainly about pain.  That’s been my main symptom, and in some ways it’s the clearest and easiest to write about.

But central sensitization can cause all sorts of bodily sensations to become amplified.

As Dr. Sletten explains, it can make lights seem brighter, and sounds seem louder.  It can make you dizzy.  It can cause digestive upset.

It can really affect all of the sensory input that is meant to help you protect your body and guide you through the world.

And this, of course, will make you look crazy to those who don’t understand.  It can even make you look crazy to yourself.

***

So I love, love, LOVED the part around the 7:20 mark where Dr. Sletten asks, “So how much of this is psychological?  NONE.”  Bam.

“The emotions are a symptom, not a cause.”  YES.

How I wish the people in my life had believed this, all the times I tried to explain it to them ten years ago.

I knew I wasn’t crazy; knew it wasn’t all “in my head.”  But I could never find the right words to convey my reality; to convince people who’d already made up their minds.

It doesn’t mean they didn’t care.  But there’s a difference between knowing you’re cared about, and feeling truly believed and understood.  There’s quite a big difference, actually, and it can hurt to never get that second part from the people you love.  To know they’re tolerating your “craziness,” instead of seeing you for who you really are.

***

I wasn’t really planning on writing such a personal post today.  I seriously LOVE the science behind this stuff, so I was planning to take some notes on important concepts and get more into the nitty-gritty.

But I guess this is the part of my story that I needed to tell today.  More of the nitty gritty will have to come later on.

***

The one sciencey thought I wanted to leave you with right now is that this video provides some great insight into how central sensitization can lead to what are called central sensitivity syndromes.

After all, it’s not just pain.  It’s never just any one thing.  It’s the fact that the sensory information that’s supposed to give your brain cues as to how to respond to your environment is coming in way too “loud.”

This can create all sorts of different symptoms and sensations in different people.  It can lead to chronic pain; some people call it fibromyalgia.  It can cause phantom limb pain; it can cause Complex Regional Pain Syndrome (CRPS).

It can cause lead to diagnoses whose names imply more of a specific focus: chronic pelvic pain.  Temporo-mandibular joint disorder.  Irritable bowel syndrome; other digestive issues.

But they all fall under this umbrella term: central sensitivity syndromes.   Despite having seemingly very different symptoms on the surface, all of these conditions can share a common cause, at the level of the nervous system.

***

So that’s all for now.  I hope you get as much out of this video as I did.  (And if you do, I hope you spread it around– I seriously want everyone in the world to watch it!).

As always, if you have any thoughts or questions for me, you can leave a comment below or email me!

 

 

How I developed central sensitization, Part 4

I began to wonder if something about the compartment syndrome and the leg surgery could have changed something in my chemical makeup, weakening my body and depleting its healing response.

After all, pain was supposed to be my body’s way of telling me that I was injured.  Something was broken; something was wrong.

Time and time again, I’d go to see a doctor, and they wouldn’t be able to find anything wrong.  My elbow was fine; my wrists were fine.  One of my shoulder muscles had a knot the size of a pea, but according to the pain specialist I saw, it  “shouldn’t be causing this much pain.”

It was honestly so, so frustrating.  I really started to think there was something wrong with me that doctors just couldn’t find.  Something wrong in my tissues; maybe some kind of problem with inflammation.

***

My primary care doctor back home started to think there was something wrong with me psychologically; that maybe this was depression, or anxiety.

But her suggestions just didn’t resonate with me.  I’d been depressed before.  I knew what it felt like, and this wasn’t it.  As much physical pain as I was in, I was still in so much less pain, emotionally, than I’d been in as a teenager.

After all, I’d been through a time when it felt like daggers just to breathe; when I was so exhausted from trying to make it through the day that the walk from my parents’ driveway into the house seemed so far I might not make it, and I had to rest in my car.

I’d been through all that, and it hadn’t resulted in physical pain like this.  In fact, my body had been at its peak, running faster and faster.

Now I’d come out of all of that– the clouds had finally lifted, and for the first time, I felt like knew what I wanted out of life.  I was enjoying my classes, and the fact that I was meeting so many like-minded people.  I felt like we were all going to graduate and change the world together.  Finally knew what it felt like to be happy, when before it had been just a word.

How could depression be causing this debilitating pain now, when it never had before?   Apart from the pain itself, I was actually happy with my life now.  It didn’t make any sense.

To be continued in Part 5.

To start from the beginning of this series: