Chronic Pain

An update on my mast cell recovery :)

Hey everyone,

A few people have reached out to ask me in the past week to ask how I’m doing now, with my mast cell issues. Whenever that happens, I always take it as a sign it’s time to get something up on the blog… so here you go!

First, let me preface this by saying that, in keeping with DNRS principles, I don’t normally think in these terms.

I know that, when you’re really limited in what you can do, you really cling to those recovery stories, and seeing people in the DNRS forum list exactly how many foods and spices they’ve gotten back.

If you’re in the space where you need to think like that, and it helps you feel positive or to have some hope, then all the power to you.

For me personally, I’m doing well enough that I don’t necessarily feel like I need to keep a specific list, but for the sake of answering you guys, I will :)

What were my treatments?

Lifestyle changes recommend by my doctors:

  • eating as diverse a diet as possible, including an emphasis on fruits and vegetables
  • exercising regularly
  • learning that I am hypermobile and doing physical therapy to reduce strain on joints (when the body has to heal an inflamed joint, it can trigger mast cells)

And how am I doing?

When I wrote my post last summer, I was experiencing almost no symptoms at all… yet I had almost no stress in my life, and was still taking Ketotifen twice a week.

In my most recent update, I discussed how, once I tried to cut back on my medication and face some of the stresses in my life, I realized that I did still have some underlying mast cell activity going on.

Given everything that’s going on right now, it seems like a weird time to write about how you’re doing well.

I would honestly feel like a jerk if I came on here and wrote about how “oh, I worked on my stress! It’s all under control now!” I don’t know if anyone would say 2020 has been low-stress, and it certainly hasn’t been for me.

So, although I was not able to change that part of the equation, I did keep going with the other facets of my recovery.

I’m happy to say that I’m doing so much better now.

Again, when you do DNRS, you’ll see why they recommend not to make “lists” of symptoms, or compare your recovery time to others. (It’s because it puts your brain back in that “fight or flight” trauma loop that it’s trying to get out of).

That is why I haven’t shared tons of specifics about my symptoms and whatnot.

But, at the same time, I do know how important it is, in those beginning stages, to know that someone else got through it, and that there is hope.

So here is where I stand now:

I’m still doing DNRS. I don’t necessarily do a full hour a day, now that I’m about a year out, but I do about 15-30 minutes a day. I also make sure I structure my life around the principles, so that my brain stays out of that “trauma loop.”

I’m pretty much eating whatever I want. The only thing I have to be careful of is dairy, for some reason– I can have a little, but not a ton. However, this is still a work in progress and I expect that it may become a non-issue as I continue to heal.

The other things I’d been nervous about– spicy food, caffeine– have all turned out to be fine.

I have no issues with exercise, or activity, or, thankfully, hot or cold weather. (I had no air conditioning for a while in my car this summer and somehow, I survived even that without a mast cell flare-up!).

Overall, I don’t really feel that mast cell dramatically impacts my life. I will probably always be sure to pre-medicate before medical and dental procedures, but other than that, I am hoping to wean myself off of Ketotifen completely in the next few months.

I do know that things could always change– but thankfully, I feel confident that I have the right tools if they do.

So… I don’t know if I’ll ever say that I’m “happy” I ended up on this journey.

But I can say that I have met some fascinating people, and am so grateful for all the support I’ve received. Whether it was medical professionals, people I met at in-person groups, or online support groups, I learned so much– not only about myself, but about how others see the world, how they can rise to challenges and then turn around to help those behind them..

I’ve been through a lot– but I’ve also learned a lot, and I feel a lot less alone.

For more info, including the scientific nitty-gritty: I’ve been working on an additional site! Sunlight in Winter was originally written for people with chronic pain/fibromyalgia, so I’m planning to share more mast-cell specific info over on Mast Cell Journey. (It’s somewhat still under construction, so please bear with me!).

Hope this helps!

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