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

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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/

Published by Christy Collins

Hi, I'm Christy! I'm an aspiring physical therapist sharing what I've learned about health, fitness, and overcoming chronic pain.

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

  1. thanks for taking the time to respond, and I’m pleased it helped. The commonalities I find most interesting are the ones between DNRS and contemplative practices (minus the religious underpinnings of many). For me, explain pain is a cognitive intervention, that supports why/how these other interventions work and can provide some additional motivation to perform them. Then again the effects of DNRS and contemplative practices can be powerful educational agents too.

  2. HI Christy – great blog, and dynamite result. People have been asking me about this too, so I will reference your blog next time.
    One thing related to the science – the following statement is a theory – and that’s okay when it is stated as such .”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.”

    In addition, the implicit message could be that all chronic pain is caused by the ANS, so its important people know that this is not an intended message.
    The explicit message is that DNRS’s effects arise because of changes in the ANS, yet one cannot preform these techniques without impacting many aspects of our existence. We might state that all of these feed the ANS or interact with it, yet that is not the language used here. It’s hard to imagine that ANS activity is not part of living with pain.

    I know you have a science- brain, so I thought I would share this.
    Apologies if you are well-aware of all this.
    And all the best on your continued journey.
    neil

    1. Hi Neil, thanks for your comment! I’ve definitely spend a lot of time thinking about the parallels (and differences) between DNRS and pain neurophysiology education.

      I can’t say that I’m personally a good judge of using DNRS for pain, since I was already so well-versed in PNE, and am always employing the concepts in my daily life. I don’t think my experience would compare to someone who tried DNRS as their primary intervention for chronic pain.

      However, for something like mast cell activation, I can say that while I was sick, I noticed a real-time correlation between stress, my emotional state, and my physical symptoms. And I often noticed a real-time reduction of my symptoms, following 1 or 2 DNRS rounds (each round being about 15 minutes long).

      Chronic pain has always much less clear-cut for me. There have been times when I’d be having the best day of my life– and still be in terrible pain. Other days, I’d notice my pain fade away if I went out and did something fun with friends. So I do think our experience of pain is very multi-faceted, and involves many different brain areas and nervous system inputs.

      I started DNRS being completely skeptical about the science behind it– I was really going off of the anecdotal evidence of my friend from the support group, as well as the twenty or so other patients my allergist had seen make dramatic recoveries using the program.

      In the end, DNRS worked for me without my completely being able to understand the mechanisms behind it. I think of it as largely harnessing the power of the placebo effect, To me, the “fight-or-flight” vs. “rest and digest” statement is best taken as a very helpful metaphor, which allowed me to visualize the physiological state I was hoping to achieve with my rounds. I agree that it is still very theoretical, and that much more research is needed (and thankfully, a few universities in Canada are starting to do this research!).

      I do think DNRS is different from PNE, in that, in DNRS, the idea is that you really are taking a leap of faith that your “triggers” (whether they are allergens, chemicals, or whatnot) are inherently harmless, and that by retraining your brain, you can change your body’s response to them over time. (I never would have believed this if I hadn’t experienced some of it myself!).

      However, in terms of chronic pain, it is obviously not so clear-cut, since there are so many reasons for pain. As you and I would both agree, when PNE is applied successfully, it isn’t telling a person to just IGNORE their pain. Instead, it’s helping the person to better understand his or her body, knowing that some pain may be coming from the nervous system, and some may be coming from an actual injury or physical issue. So that’s one major difference between the two.

      The major commonality is that both PNE and DNRS work by helping to decrease the threat value of a certain stimulus. I do think this runs along different pathways in the brain depending on the type of stimulus (such as allergen vs pain). But both, in the end, are focusing on the idea of calming down an overprotective threat mechanism.

      Thank you for commenting! You gave me the chance to write out some of the ideas I’ve been considering for a long time, with this response.

      I’m so glad to hear you’ll be sharing my blog– I hope it is helpful to people!

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