Chronic Pain

**~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!

The official website for the Dynamic Neural Retraining System

Inspirational stories:

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

Update, Nov. 2020: I have actually started a new site where I talk about mast cell issues in more detail.  Check out my site Mast Cell Healing!

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

  1. Hi, i took DNRS online training program and for almost 5 days i am practicing. I was wondering how did you do challenge part for mcas? I am trying to imagine a situation and the reactions as a challange but i am not sure if it will work like that. Did you challenge yourself with real time experience? If not dows just imagining work as a challenge?

    1. Hi Merve, so what I did might have been a little bit different from how some people do challenges. I felt like there were enough difficult things that I was already dealing with in my every day life that I used those as my challenges, when they came up. (I don’t want to elaborate too specifically about my “its”). That’s what worked best for me.

      Are you participating in the DNRS forum? I found it super helpful! I also had a few coaching sessions with Kelly Showalter, who helped to confirm I was doing things correctly.

      1. Hi Christy,
        Thank you for your reply. I registered to forum and my invitation is just accepted yesterday so i will have a look at there! I close my eyes and try to imagine a past panic moment but i dont think that it triggers me completely so i am not sure if i do it correctly. As you said maybe i should also look for a coaching session.

  2. There is a very significant chance you have either Ehlers Danlos Syndrome or Hypermobility Spectrum Disorder. SI joint issues, hypermobility in the spine, and MCAS all seem to be pretty common with connective tissue disorders like EDS and HSD. In fact, just knowing your spine is hypermobile and it caused pain means you already at least meet the criteria for Localized Hypermobility Spectrum Disorder. But I’d bet that it is more widespread than you realize and you’ve just been able to compensate for it pretty well. Frankly, the diagnosis is not always that helpful because most doctors dont know anything about it anyway, but I bet if you saw someone like Kevin Muldowney, a physical therapist who specializes in EDS and hypermobility, you would learn a lot. If nothing else, as a PT who is aware of SI joint issues and who works with a population predisposed to extensive SI joint issues (the SI joint is mostly stabilized by ligaments. People with EDS have very weak ligaments), I bet talking to him would be very informative. He is in Rhode Island, so not that convenient to see on a regular basis, but definitely worth a trip down. If nothing else, you might want to share your list of PTs with him and have him check both your SI joint and lumbar spine. If any readers live in Rhode Island, they might get a lot out of even just one visit.

    1. Cher– thank you so much for your comment. I wasn’t as aware of these issues at the time that I wrote this post, but actually, since then, I have found my way to Muldowney Physical Therapy (currently working with Kathleen) and you are so, so right.

      I do remember now that an orthopedic surgeon told me about ten years ago that he believed I had hypermobile joints and that, unless I always made sure to keep my muscles strong, I was “going to have a very difficult life.” I honestly had no idea what he meant at the time (and then my insurance changed and I never saw him again). No other doctor, in all of my struggles with chronic pain, has ever really picked up on it either. But since going to Muldowney and reading Kevin’ book, it is all starting to make sense. I think I must have some type of hypermobility disorder and am currently waiting to be seen by a geneticist they recommended for further evaluation.

      Thank you so much for your comment! I’m curious–are you a medical professional or a fellow patient?

  3. 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.

  4. 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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