**~My recovery from mast cell activation, and how the mind and body are SO connected~**

8662928d-b190-4364-8411-1a03279919d2

As some of you know, last fall I was diagnosed with a rare condition called mast cell activation syndrome. It’s a relatively new condition– doctors have only even had a name for it for the past 10 years.

Mast cells are a part of our immune system, and they once had a tremendous role within our biology, fighting off deadly diseases and the like. Now, they don’t have as much to do, so sometimes when something finally DOES trigger them, they can get a little confused.

Mast cell activation can happen to people for all sorts of reasons– a viral illness, food poisoning– for me, it happened after I had an allergic reaction, and my immune system couldn’t figure out how to settle back down.

Mast cells are some of the main cells responsible for allergic reactions. People with this condition can have allergic-type reactions, sometimes spontaneously, without a clear trigger. It can be food, a change in temperature, just about anything.

I’ve personally met people who can’t leave their homes without wearing a mask, because they could literally go into anaphylaxis from breathing in someone else’s perfume.

I am lucky that this condition never got that bad for me– but I certainly didn’t know that at the time. When I first got the diagnosis I honestly wondered if I was dying.

However, I am SO SO lucky that very early into my illness, I went to a support group and met someone who had fully recovered using a program called the Dynamic Neural Retraining System.

DNRS uses the concept of neuroplasticity– that “neurons that fire together, wire together.” It centers on the idea that many chronic, “mysterious” illnesses that doctors don’t fully understand can actually have a huge brain component– and that if you change what your brain is doing, you can change the physical reality of what is happening in your body.

When you do DNRS, you are essentially taking your brain out of a chronic state of fight or flight, and helping to grow the neural pathways associated with rest and digest.

So I did it. I was a bit skeptical at first, but I couldn’t argue with my friend’s success.

The program requires that you put in a minimum of an hour a day, every day, for 6 months. In the beginning, I did more than the hour minimum, because there are a lot of supplemental activities, journaling and writing prompts, etc.

I’m happy to say that, 6 months later, I have noticed a HUGE difference. Those of you who’ve seen how scared I was to eat– I am back to pretty much eating whatever I want. And I’m back to pretty much doing whatever I want.

I went to a wedding and drank the champagne. I went to my friend’s lake house and jumped in the lake. These are all things I thought I might never be able to do again.

Of course, I’ve followed very single piece of advice my doctors gave me, but I think the real reason I got better so fast (compared to many patients) was DNRS.

DNRS has been shown to help people with ALL kinds of health issues– the list is pretty crazy.

I’m going to put some links to a few resources below, for anyone who is interested. If you think DNRS might help you, or you have any questions, please feel free to let me know!

http://overcomingfoodsensitivities.com/
http://limbicrecovery.com/
http://wheelchairtorollerblades.com/

How the Dynamic Neural Retraining System is changing my life

Hi everyone!

Today I wanted to share a bit with you about the Dynamic Neural Retraining System, or DNRS for short.

As you may know, this past fall I was diagnosed with a condition of the immune system called mast cell activation syndrome.

When I first got the diagnosis, I initially went into research mode, reading every single thing I could– every article, every single comment in patient support groups, and keeping a journal to track my symptoms.

This has always been my normal approach to dealing with health issues, and I had expected it to be the only way to deal with mast cell, as well.

However.

A few months into the process, I attended an in-person support group, where I met someone who had recovered from the same condition as me, using the Dynamic Neural Retraining System.

I’m going to be honest with you. I had never heard of DNRS before, and never would have done it if I hadn’t met someone in person who had recovered.

It took a lot for me to overcome my skepticism.  In fact, I was still fairly skeptical when I began the program — I just started doing it anyway, because one of my doctors was strongly urging me to do it, and I figured I had nothing to lose.

But the more I have been doing the program– I’ve been doing it for an hour a day, for five months now– the more I understand it, and truly believe in it.

How does DNRS work?

DNRS focuses on the idea that many complex, chronic illnesses can actually be the result of a brain that is stuck in a chronic state of fight or flight.

In DNRS, this is termed limbic system dysfunction.  (The limbic system is the part of the brain that regulates our emotional and behavioral responses, and also our response to threats– the fight or flight mechanism.  It includes the amygdala, which causes us to feel fear, and the hippocampus, one of the most important parts of the brain for memory).

If you look at the stories of the different people who have recovered using DNRS, you’ll find that the symptoms they had were all very different.

In DNRS, the focus is not on the symptoms– it’s on rewiring the brain.  

DNRS relies the concept of neuroplasticity– meaning the brain can change, based on new experiences.

If the brain can be changed by trauma– whether it’s emotional or physical– into a chronic state of fight or flight– it can also change back into a healthy state.   

That’s where DNRS comes in.  When you do the program, you are essentially following a series of steps, writing exercises, and visualizations– every day– to help the brain form new, healthy pathways.

It’s more than just positive thinking– it’s more like a practice. 

I think of it like this.  We all know we should think positively.  We all know we should occasionally do things to calm down our system, such as meditate.

But DNRS really takes it a step further.  It’s not just about relaxation– it’s actually about building new brain pathways.

In the five months I’ve been doing DNRS, I’ve actually felt this happen.  I almost think of my brain as like a construction zone.

Since doing DNRS, I’ve actually felt my brain change, in a way that totally matches up with some of the things I’ve learned about the brain, emotion, and memory, in my science classes.  (I’ve actually taken a neuroscience course, which really helped me to understand what was going on).

Over these five months it’s become much easier for my brain to get out of fight or flight and access happy emotions and memories, because I literally spend an hour every day activating those neural pathways.

The program isn’t some magic thing that will only work for some people.  It’s about practice.  Practice makes perfect.  If you really do it for the recommended time– a minimum of an hour a day, every day for at least 6 months– you will see results.

Getting the brain out of its limbic system trauma loop.

So, if you read my blog now, you’ll see that I don’t talk about my specific mast cell symptoms very much.  Of course, this is the complete opposite of the approach I’d planned to take.

But one of the main principles of DNRS is that, once you’re dealing with a chronic condition, focusing on your symptoms can actually reinforce that state of fight or flight.  So we actually try not to talk about our symptoms (except, of course, in cases where’s absolutely necessary, such as when at a doctor’s appointment).

This took me a while to wrap my mind around, but over time, it made more and more sense to me.  Focusing on my health didn’t cause the problem, but now that I was in this situation, I had to do everything possible to get my brain out of chronic fight or flight.

That’s why you won’t find me writing too much about my physical symptoms in this post, or on my blog in general.  I will say that I have seen an improvement in my physician symptoms, and that I have every reason to recommend DNRS to others.

I do want to tell my whole story at some point, but for now, my brain is a “construction zone” of hope and healing, so the rest will have to come later :)

However, here are some of the DNRS recovery stories that have personally inspired me on my journey– definitely check these out!

(The first three people on this list used DNRS to recover from mast cell activation, as well as other conditions!).

I will be explaining more about DNRS in my next post– including how the medical community is beginning to take notice– so stay tuned!

img_4138
Attempt at a victory selfie after a particularly good doctor’s appointment– I’m exhausted cause I was so nervous for the appointment, but I got good news!

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

Hey everyone!

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

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

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

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

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

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

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

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

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

You can check out the original study here.

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

Happy Monday to you all!

My diagnosis with mast cell activation syndrome

Hi everyone!

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

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

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

What is it?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So… I am still going.

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

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

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

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

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

Piecing it together

Well, this has certainly been a strange year for me and weird medical problems (may I remind you of my one week of temporary paralysis, following a chiropractor visit back in May).

It turns out that, apparently, my last post announcing that I’d been diagnosed with mast cell activation syndrome may have been a bit premature.

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.