Bendy joints, a racing heart when you stand, and a body that reacts to everything. I had all three, and learning they were all related changed everything.

Let me tell you two things about myself that I never once thought were related.

The first is that I was the bendy kid. I could drop into a full split and just sit there, comfortably, for as long as I wanted. And I definitely did it to show off. If you needed someone to fold up into a pretzel at a sleepover, I was your girl… I will not disclose whether that split trick followed me all the way through college. Hellooo party tricks!

The second is that I have been dizzy for as long as I can remember. Not a little woozy. Dizzy. I remember my mom taking me to the doctor when I was young, and he told her to add more salt to my food. Bravo to the one man in the 80’s that was telling people to eat salt. Looking back, I am genuinely impressed he knew to say that. He was decades ahead of everyone else, and it turned out to be exactly right.

For most of my life, those were two unrelated facts about me. The flexible thing was a cool bonus I got attention for, and the dizzy thing was just something I dealt with. Nobody ever put them in the same sentence. It took me until I was deep into studying histamine and mast cells to understand that they were never two things. They were one.

There is a cluster of conditions that keep showing up in the same people, and instead of being connected for you, each piece gets handed off to a different department ....and by department I mean doctor.

There is the bendy part, which is hypermobility, or its more involved cousin, hypermobile Ehlers-Danlos syndrome. Loose, stretchy joints. The party trick. Except, to be clear, it is not a party trick when that same loose, stretchy quality shows up in your skin in your 30s.

There is the reactive part. Mast cell activation, histamine intolerance. The body that reacts to foods and supplements, to wine, stress, perfume, to the actual weather outside. Pretty much everything.

And there is the dizzy part. Dysautonomia, and the version a lot of us get diagnosed with, POTS, where your heart races and you feel like you might pass out when you stand up. I remember being in college and doing this military style workout class. Everyone was doing burpees and I could not do them. I was so frustrated because I could do them in my mind and I had the will to work out very hard, but my body would not tolerate anything high intensity or going from up to down to up again. I would get so dizzy and would feel so defeated.

If you have one of these, there is a decent chance you have shades of the other two. Research has been catching up to this, and the overlap between hypermobility, mast cell activation, and POTS is now a recognized cluster, even if the exact wiring is still being worked out. So let me walk you through how I understand them fitting together, because once you see it, you won’t be able to unsee it.

Start with the connective tissue.

Collagen is the material that holds you together. Your joints, your skin, and the walls of your blood vessels are all built out of it. In a hypermobile body, that material is made a little looser and stretchier than the standard build. That is why I could sit in a split. It is also, and this is the part nobody explained to me, why the veins in my legs do not squeeze blood back up toward my heart as tightly as they are supposed to.

Now let’s add the mast cells.

Mast cells are immune cells, and they live right there in your connective tissue. When they are easily triggered, which is the whole story of mast cell activation, they dump histamine and other chemicals into that same tissue. And one of the things histamine does is widen blood vessels. So picture a body whose blood vessels are already loose and stretchy, and now histamine is telling them to relax even more.

Now you go to stand up.

Blood pools down in your legs instead of coming back up. Your heart figures out that not enough is returning, and it does the only thing it can do. It starts to race. That pounding, lightheaded, black spotted vision feeling when you stand is your heart trying to cover for blood that is sitting in your lower half. That is dysautonomia, and POTS is one version of it.

So the bendy joints, the reactive body, and the racing heart are not three separate malfunctions you happened to have. They are three windows into one story. Loose tissue, twitchy mast cells, and a nervous system trying to run the whole operation without steady signals coming back to it. The stretchy people, the react-to-everything people, and the dizzy-when-they-stand people keep turning out to be the same people a lot of the time, because they (we) are.

Bendy joints, a reactive body, and a racing heart when you stand are not three problems. They are one story wearing three outfits.

I said I was dizzy my whole life. Here is where that went.

In college, they finally did a tilt table test, which is exactly as awful as it sounds, and I do not recommend volunteering for it. That is when I was officially diagnosed with POTS. The doctor told me the one option people usually reach for was a beta blocker, and then, in the same breath, told me he did not actually think I should take it. I am genuinely grateful to him for that. That was not the easy or the standard thing to say, and he was right.

Years later, a different doctor prescribed me the lowest possible dose of a beta blocker, for anxiety this time. That one I am not grateful to. I took it once and woke up in the middle of the night, got up to walk to the bathroom, and passed out cold on the way there. That was the first and last time I took it. I have low blood pressure, and beta blockers make it lower. For me, dangerously low.

I am telling you my story, not writing you a prescription, and none of this is a reason to start or stop anything you are on. But it taught me to pay very close attention to how my own body responds.

What I can tell you is that my dizziness is dramatically better than it used to be, and the biggest lever for me has been hydration. Real hydration, with electrolytes, with salt actually in the water, not just chugging plain water and hoping. I also notice it gets noticeably worse with stress, and worse with anything that acts as a diuretic. The salt that doctor recommended when I was a little kid turned out to be the right instinct all along.

I will get into what I actually do, the specifics and the order I do it in, on Friday. Today I mostly want you to see the connection, because for me, seeing it was the thing that changed everything.

Most of the patients who have come to me with this triad had been completely brushed off before they got to me. Sorted into departments by body part. The cardiologist for the racing heart, the allergist for the reactions, the rheumatologist or nobody at all for the joints, and not one of them talking to the others or looking at the whole person sitting in front of them.

I was one of those patients too, until I educated myself on it in my thirties.

I want to be fair, because there are some genuinely excellent doctors out there taking this seriously and helping people put the pieces together. There are just nowhere near enough of them yet. The problem is a system that will dismiss you the minute your symptoms fall outside their specialty’s lane, or decide your problem is not a big enough deal to take seriously. If you have been made to feel like a difficult patient, or a dramatic one, or a mystery nobody wants to solve, I need you to hear that you are not any of those things. You are a whole body that kept getting looked at one part at a time.

Not everyone with one of these has all three, and this overlap is still being studied and debated. This is a lens, not a diagnosis you should hand yourself from a blog post. Some people are just flexible. Some dizziness is something else entirely and deserves a real workup. Please do not read this and stop, start, or change anything you are doing with your doctor.

But if you have spent years being told your bendiness/flexibility, your reactions, and your dizzy spells were three unrelated quirks, I want you to sit with the possibility that they were one thing the whole time, and that no one ever stepped back far enough to see it.

Today is the connection. Friday is what to do with it. Behind the paywall I will get into how I actually work this up, what I look at first, the order I go in for the dizziness versus the reactions, and what has moved the needle most for me and for my patients. The hydration piece, and everything that comes after it.

Were you the bendy kid, or the dizzy one, or the one who reacts to everything? Tell me in the comments which part of this was you. I really want to know how many of us there are.

(and upgrade to paid so Friday’s workup lands in your inbox)

Becky

• Kohn A, Chang C. The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Clin Rev Allergy Immunol. 2020;58(3):273-297. https://pubmed.ncbi.nlm.nih.gov/31267471/ (the recognized overlap of the three, and the proposed connective-tissue and mast-cell mechanisms.)

• Wang E, Ganti T, Vaughn J, Somani S, et al. The relationship between mast cell activation syndrome, postural tachycardia syndrome, and Ehlers-Danlos syndrome. Allergy Asthma Proc. 2021. https://pubmed.ncbi.nlm.nih.gov/33980338/ (co-occurrence of the triad and how the conditions may reinforce each other.)

This post is educational and is not a diagnosis or medical advice. Hypermobility, dysautonomia and POTS, and mast cell activation are real conditions that deserve proper evaluation. The overlap between them is an area of active research, and having one does not mean you have the others. Nothing here is a recommendation to start, avoid, or stop any medication or treatment. My own experiences, including my reaction to a beta blocker, are mine and are not a prediction about yours. Please bring any changes to your own clinician.