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| October of 2025 |
My body didn’t fall apart all at once. It happened quietly. Gradually. And for a long time, without a name. I talked about it in this blog post from 2020.
About six years ago, I started experiencing pain that didn’t make sense. Deep, grinding joint pain. The kind that makes you wonder if you’re aging at an accelerated rate, or if something fundamental has gone wrong. It wasn’t dramatic inflammation you could see, exactly, although I did gain weight. But mostly, it was felt. Everywhere. Persistently.
Eventually, after many false trails and many, many doctors, the diagnosis came: Mast Cell Activation Syndrome (MCAS). If you’ve never heard of MCAS, you’re not alone. Many doctors haven’t either—or, if they have, they learned about it in passing. It lives in the gray space between specialties. It doesn’t behave politely. And it doesn’t show up reliably on labs.
Mast cells are part of the immune system. Their job is protection. They release chemicals—histamine, prostaglandins, cytokines—when there’s danger. In MCAS, mast cells don’t wait for real danger.
They misfire. They overreact. They release inflammatory mediators too easily, too often, and sometimes for reasons no one can clearly identify. The result is a constellation of symptoms that can involve the joints, the gut, the skin, the nervous system, the cardiovascular system… often all of it.
For me, the loudest signal was joint pain, although I also had histamine flushing. (I thought I was experiencing the worst menopause in history.) Others experience GI distress, migraines, brain fog, dizziness, food reactions, or a constant sense that their body is “on edge.”
My working theory (because bodies have histories) is that my MCAS was triggered—or at least unmasked—by radiation treatment for breast cancer.
Radiation saves lives. I am grateful for it.
And: radiation is an inflammatory stressor. It changes tissue. It alters immune signaling. It asks the body to adapt in profound ways. For some of us, I suspect, that adaptation comes with long-term consequences, which is something supported by the work of Sarah Ballentyne back when she was doing a lot of research into these things.
More recently, there’s growing conversation—and emerging research—about post-COVID immune dysregulation, including mast cell activation. MCAS is being discussed more now, not because it’s new, but because something has shifted in the collective immune landscape. Bodies remember what they’ve been through and COVID is a neurological virus.
About a year or so ago, I came across a study linking GLP-1 medications with improvement in mast-cell–related symptoms. These medications are often discussed in the context of blood sugar regulation or weight loss, but what caught my attention was something else entirely: They are anti-inflammatory. For me, weight gain has always been an inflammatory response to something being out of balance. And MCAS is definitely an inflammatory disorder.
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July of 2024 at the closing on the new house. I'm so inflamed here, I feel like if you poked me, the indentation would stay, |
I started a GLP-1 medication in September of 2024 cautiously, without grand expectations. I had to lie to get it through one of those online places because no one is willing to prescribe it for anything but weight loss and diabetes. But, y'all, something remarkable happened: My joint pain—pain I had learned to live around—began to recede. Not dramatically at first, but fairly quickly, and to a degree that felt nothing short of miraculous. (I also lost a lot of weight because the first formulation I tried made me incredibly sick. It was a terrible choice--live with pain, or live with constant extreme nausea. My pain was so bad, I chose the nausea. I changed formulations and the nausea went away for the most part.)
Today, my pain is almost entirely gone. I don’t say that lightly and I don’t say it to evangelize a medication. I say it because when you’ve lived in a body that hurts for years, the absence of pain feels like being given your life back in small, ordinary moments.
The whole experience reinforced something I already believed, but now know in my bones:
- Inflammation is not just a symptom—it’s a state.
- The immune system and nervous system are in constant conversation.
- Healing is rarely about a single lever; it’s about restoring balance.
It taught me (again) how easily complex conditions get mislabeled as anxiety, aging, or “just stress.”
And it reminded me—again—that bodies are not betrayers. They are historians. MCAS continues to teach me humility and patience, that healing isn't linear, and that just when I think I've found a solution to one thing, something else pops up. I continue to have to dial in my diet and address my stress level. I'm trying to get back on the mat for yoga. I'm still hopeful I won't always have to take the medication, which is expensive, not covered by insurance, and requires me to give myself a shot in the stomach every week. But if I do, so be it.
If you’re reading this and thinking, something here sounds familiar, I won’t tell you what to do. I don’t believe in tidy prescriptions for complex bodies. But I will say this: You are not imagining it. You are not weak.
Relief can come from unexpected places. Sometimes, healing doesn’t look like fighting harder.
Sometimes, it looks like helping the body stand down.
Comments
I have a new-to-me doctor who agreed to write me a prescription (and then flight to get me approved for it) for Trulicity. It hasn't done much for weight (apparently it isn't really supposed to) and I don't yet have the a1c data, but I'm trying to decide if it is worth the extremely slow digestive process. That says, if it helped with joint pain (and perhaps it does?) it would be worth it. My Rx antiinflammatories aren't miracle workers.