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!
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!
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!
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.
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 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:
