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 story of my wrist, and the pot of boiling water (Finally, my own pain science metaphor!).

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Using metaphors to explain how pain works

One of the original reasons I started this blog was to get the word out about the various pain scientists and educators whose work has touched my life (including, but not limited to, Neil Pearson and Lorimer Moseley).

From them, I’ve learned that pain isn’t here to make us suffer (although it seems like it sometimes).  Ultimately, it’s here to keep us safe.

It’s a protective mechanism, and sometimes it can try a little too hard to keep us safe.  A sensitive nervous system is like an overactive alarm system, or an overprotective friend.

It can “zoom in” or “turn up the volume” on pain signals it thinks you need to pay more attention to.   This is what I call the “up” dial.

Your body can also turn down the volume on pain.

There may come a time when your nervous system decides it’s more important to “turn down the volume” on pain– or even block out pain signals completely.

Normally, this “down dial” isn’t something we are able to access consciously.  It’s something our body can do automatically, in times of great danger, if those pain signals are distracting us from getting out of a dangerous situation.

Neil Pearson, for example, tells the story of a patient he once treated who had been hit by a drunk driver on the way to work.  He woke up upside down in his burning car, and realized he had lost an arm in the accident.

The man managed to extricate himself from the car, collect his missing arm, and walk back up to the side of the highway all without feeling any pain.  This is because, in that moment, his body knew that feeling pain would take away from his chances of survival– the most important thing was his getting to safety.  Once he was safely in an ambulance in his way to the hospital, then the pain set in.

Your body has the ability to adjust the level of pain you perceive.

This is a survival mechanism that normally kicks in under emergency circumstances.

However, it is something we can also learn to do consciously with practice, using various techniques to tell our body to “turn down the volume” on pain.  That is the focus of pain neurophysiology education, the approach to pain management that changed my life.

My own metaphor

The really good news about this approach is that you don’t actually have to be a neuroscientist, or even have a huge scientific background, to learn how to do it.

Somehow, once you start to switch over from viewing pain as an enemy to a friend or a guardian, it can start to make an immediate difference in how you perceive it.

That’s why I’ve been so determined to spread the word about some of the metaphors that have helped me.  However, I’ve felt a bit limited in doing this, since I’m also interested in not plagiarizing other’s work.

So today at long last, I got my own metaphor. 

It’s not particularly wild or dramatic.  In fact, it’s pretty subtle (and also makes me not sound terribly coordinated).  However, I think it does a great job of explaining in a down-to-earth way exactly how the nervous system can choose to turn pain signals out, if it benefits your survival to do so.

It’s a small thing, really.  (And actually, it illustrates to you how absent-minded I can be at times, but that’s another matter!).

I was cooking dinner, boiling some ravioli.  They looked about done, and I was starving.  So, without really thinking, I lifted the pot off of the burner with one hand, and started taking it over to the sink to drain.

Halfway to the sink, I realized the pot was much heavier than I’d anticipated.  I realized I hadn’t really been paying attention, and it had been a mistake to pick it up.   Now I felt like my wrist was about to give out, and I was already halfway to the sink.

I quickly thought through my options.  I wanted to put it down instantly, but there wasn’t a clear space on the counter.  I wanted to put another hand up to steady the pot, but the handle was too small and I would have needed a potholder.

My wrist was really starting to hurt, and for a second I considered just dropping the pot altogether.

But no.  I had a vision of scalding water splashing everywhere, including on me, burning my skin.

And just like that– that very second– all the pain in my wrist disappeared.  Nope, my body said.  We are NOT dropping a pot of boiling water on ourselves today.  

My nervous system made an executive decision, in that instant, to block all the pain out.  Ultimately, the prospect of spilling boiling water all over myself was more of a threat to my survival than the pain in my wrist.

I was able to get the pot of water all the way over to the sink without incident.  About 30 seconds after I put it down, that’s when the pain came back.

Like Neil Pearson’s patient making it safely into an ambulance, my nervous system had blocked the pain out just long enough for me to safely put the pot of water down.  Once that was over, the pain came back, to remind me that indeed, I had put my wrist through something strenuous.

It’s been a few hours and my wrist is just a little bit sore.  I know it will go away– it wasn’t a permanent injury or anything.  I just strained it a little bit by trying to carry something it wasn’t strong enough for.  (This is a good reminder that I need to pay more attention in the kitchen, even if I am spaced out and hungry!).

But I wanted to share this with you because I think it provides a good example of how pain isn’t always a clear-cut indicator of what, exactly, is going on in our body. 

Instead, it represents our body’s “safety monitoring system,” warning us about potential threats to our survival, and making sure we choose the course of action that’s most likely to keep us safe.

Of course, if you have chronic pain day in and day out, it can be hard to see pain as a protective mechanism. 

I said it was a protective mechanism– I never said it always perfectly.

Sometimes in the case of chronic pain, the “up” dial can get stuck on.

That’s why, again, it is so important to know that your pain also has a “down” dial, and that, with practice, you can learn to access it.

I hope you found this post helpful!

For more on the metaphors which can help you understand pain, I recommend you check out my posts:

As well as:

That’s all for now!  

Any questions, leave a comment below or email me at sunlightinwinter12@gmail.com!

Pain is like Memory: Dr. Jay Joshi on Central Sensitization

Okay.  I’ve really been looking forward to publishing this post.

Here, we’re revisiting the same great talk by pain physician Dr. Jay Joshi.  In my last post, I outlined what Dr. Joshi says are the four main categories of pain.

Central sensitization is the type that is, unfortunately, the least understood.  And it’s also the type that’s had the biggest impact on my life to date.

What is it?

Central sensitization is a process through which the central nervous system learns to become more sensitive to, or amplify, pain signals.

I struggled with it for years and thought I was crazy, because I had pain that came and went throughout my own body that most of the doctors and physical therapists I saw couldn’t explain.

Central sensitization is a form of memory.

Generally, we think of central sensitization as a sort of a disorder, because of course, it causes so much pain and suffering.

However, as I’ve touched upon in previous posts, central sensitization actually has its roots in some of the same neural mechanisms that allow us to learn new things and store memories.  We “learn” from pain just as we learn from anything else, and our nervous systems can be changed by it.

As Dr. Joshi says:

“Central sensitization is what happens when the brain is exposed to certain experiences or certain memories.  It’s life… it’s being a human.

When you have a certain memory that forms it, becomes part of who you are… it becomes part of your experience.  And your behavior changes as a result of that.

This is not something that happens randomly…  This is something that happens to the neurophysiology of your brain.  It forms memories.  Those circuits get hardwired on your little ‘hard drive’ that’s known as a brain.  The same thing that happens with pain, when you have a chronic pain stimulus.”

The process of central sensitization is not separate from our brain’s other functions– rather, it belongs to them.

I found this happened to me so often, over the years, before I even knew what central sensitization was.

I’d have a painful experience– the first one was when I threw my back out at age 21— and it was like my nervous system was determined not to let me forget about it afterwards.

According to Dr. Joshi, this is exactly how central sensitization occurs, after a painful or traumatic event:

“You have a painful experience, and usually one of the first things that happens is your brain says ‘hey don’t do that again.'”

It’s trying to protect you from doing the same thing that might have caused you to become injured in the first place.

But what happens when that signal doesn’t stop? 

In cases like mine, this process can go on indefinitely.  Your brain keeps trying to protect you, telling you not to repeat certain activities, long past what’s actually necessary or conducive to your well-being.

This is called the wind-up phenomenon— when the brain’s protective mode stays on, and never gets the signal to turn “off” like it should.  Instead, it just keeps repeating the message of “don’t do that again”– even if it’s something that, technically, should be safe for you to do.

Once this process, the pain can sort of build on itself, like a snowball effect.  And you can remain in pain, long after the original injury that might have set all this off as healed.

Does all chronic pain cause central sensitization?

Dr. Joshi explains that chronic pain is likely to lead to some degree of central sensitization.  (This is significantly higher than other estimates I’ve heard, such as Dr. Elliot Krane’s figure of 10%).

However, I think Dr. Joshi’s explanation makes a lot of sense.  After all, when you experience chronic pain, you’re basically bombarding your nervous system with opportunities to practice sending pain signals.  Why wouldn’t it get better at doing so, the same way you can get better at playing the piano or riding a bike?

Central sensitization is still a part of my life.

I don’t expect to ever be able to totally reverse the process that first began, for me, at age 21.

However, I was able to make a lot of positive changes and gain back a lot of control over my body through pain neurophysiology education, which I write about a lot on this blog.  (Basically, it involves teaching your nervous system what it’s like to feel safe again, so that it can turn the “volume” back down on the pain).

There’s a lot more to say!

Dr. Joshi has some great thoughts on how to improve the medical profession’s understanding of central sensitization, as well as ketamine infusions– a potentially powerful treatment for patients with central sensitization.

I’ll be sharing more on this coming up– hope you liked this post!

The Four Categories of Pain– Dr. Jay Joshi

Hi everyone!

I’ve just discovered this awesome talk on central sensitization by pain management physician Dr. Jay Joshi.  It’s totally packed with information I want to share with you all– such as why it’s so hard to get help for central sensitization, and how ketamine infusion treatments can help.  There’s so much here, though, that I thought I’d break it down into bite-sized information for you.

So, to start out, let’s look at what Dr. Joshi says are the four main types of pain.  (For the purposes of this blog post, I’m actually jumping ahead to the 8:50 mark– later, we’ll come back to the beginning).  

The four types:

  1. Nociceptive
  2. Neuropathic
  3. Inflammatory
  4. Central Sensitization

1. Nociceptive pain: pain that results from actual tissue damage, or potential tissue damage (like if you’re starting to bend a joint past its normal range of motion).  It is “the common discomfort we have all experienced as a result of injury — a paper cut, a broken bone, or appendicitis, among other things.

More on nociceptive pain and its subtypes

2. Neuropathic pain: involves physical damage to the nerves or the central nervous system itself.  It can also occur when the person has a tumor that’s pressing upon a nerve.

3. Inflammatory Pain: Pain produced by the chemicals our body releases as part of the inflammatory or healing process.  On a small scale, think of how a bruise swells up and is painful to the touch.  This is because our body is sending special cells and chemical messengers to that part of our body in order to heal it– and also to make it painful, so that we know to protect the area.  This is inflammatory pain, and it can also happen on a much larger scale with more serious injuries.

4. Central Sensitization: And here we are– the type of pain that’s most affected my life.  It has to do with the concept of neuroplasticity: that the central nervous system (the brain and spinal cord) can change in response to the things it experiences.

When your body experiences a painful event or an injury, it learns from that experience, the same way it learns from anything.  Practice makes perfect– when your brain gets enough practice at sending pain signals, it gets better at it gets better at it.  In a way, this is for your protection– you learn and become more sensitive to performing the same kinds of actions or motions that may have caused this injury in the first place.

However, as a protective mechanism, central sensitization can sort of backfire.  Eventually, we can reach a point where our nervous systems are trying to protect us too much, when we’re not really at risk of injury anymore.

So these are the four main types.

Unfortunately for those of us suffering from central sensitization, it’s the type of pain that doctors and other medical professionals know the least about.

As Dr. Joshi explains, “there are physicians who claim to be pain physicians… who are anesthesiologists… who don’t even understand it.  And they’re teaching at major programs.  It’s scary.”

Central sensitization is as real a type of pain as any of the other three.  And, as Dr. Joshi says, if you’re going to be able to adequately treat pain as a doctor, you better be aware of all four categories.

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Dr. Joshi also has some really great analogies which help to explain the phenomenon of central sensitization further.  I’ll be elaborating on some of those in my next post.

I hope this was helpful!

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Also: you may have noticed that I’ve been playing around with my blog’s format.  I’ve honestly never truly been happy with the appearance of my blog, because I find my options are so limited with premade WordPress themes.  I’m beginning to experiment a little (and even spend a little bit extra!) to try to get things right.  If you have any thoughts or suggestions how improve the appearance of my blog, please let me know!

 

 

 

 

 

Shedding light on central sensitization

Hi everyone!  Hope you’re all having a great summer.

I just wanted to let you know that I recently added a new section to my blog, to focus on central sensitization.

When I began this blog in late 2012, I started out writing about the topics of chronic pain and fibromyalgia, terms which most of my readers are more familiar with.

However, over time, it became more and more important to me to focus on some of the scientific research that’s been shedding light on the nervous system phenomena behind chronic, persistent pain.

Central sensitization has had a huge impact on my own life, one that’s stretched far beyond the initial injuries that caused me to develop it in the first place.  (Basically, central sensitization occurs as a response to some sort of trauma to the body, leaving the person with a heightened sensitivity to pain long after any physical injuries have healed).

I’ve recently begun to tell the story of “How I developed central sensitization.”  It’s a series posts about how, after years of abusing my body as a high school athlete with an eating disorder, I finally stretched my nervous system to the breaking point.

I’ve also written a series on my experience with pain neurophysiology education, an approach to physical therapy that taught me to better manage my condition.

These stories are incredibly personal to me, yet I really believe that central sensitization is an under-recognized problem, and I’m determined to raise awareness.  It took me years of suffering before I even knew the name of my condition (or was able to get help treating it), and it shouldn’t have to be that way.

So on my blog, I’ll be telling stories from my own personal experience, well as highlighting some of the articles, research and researchers that I find inspiring and noteworthy.

I’ll still be writing about chronic pain and fibromyalgia, recognizing that there are many factors that contribute to each patient’s experience with these conditions.

Ultimately, I believe that the more we know as patients, the better we can advocate for ourselves.  That is why I believe so strongly in raising awareness of this issue, both in terms of the scientific discoveries being made, as well as sharing the impact it’s had on my own life.

Here are some of the posts I’ve written on central sensitization so far:

What is central sensitization?

The nervous system and chronic pain

How I developed central sensitization: Part 1

How I developed central sensitization: Part 2

How Clifford Woolf discovered central sensitization (and why you shouldn’t blame yourself for chronic pain)

Central Sensitivity Syndromes

Todd Hargrove: Seven Things You Should Know About about Pain Science

Let’s give this a whirl: explaining a scientific article in plain English

All of these, of course, are listed on my new “Central Sensitization” page.

Other great links:

Central sensitization in chronic pain (from Paul Ingraham at PainScience.com)

Dr. Sean Mackey: An Update on Fibromyalgia (really interesting talk from a Stanford researcher on the role of central sensitization in fibromyalgia).

and a lot more within my “Resources” section (if you haven’t swung by in a while, I’ve been adding a lot to it).

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I hope the things I write and link to are helpful to you.  As always, you’re welcome to contact me with any comments or questions.   (You can comment below or send me an email!).  Happy reading!