All The Ways Dysautonomia, EDS, and MCAS Affect Me |

Since I’ve gone public with my health journey, a lot of people have been asking me about my specific illnesses and how they affect me. So, this week, I’ve decided to make a blog post about it!

My hope is that maybe I’ll help steer someone toward a correct diagnosis, which as many of you know, was difficult for me to obtain.

Let’s start with the basics:

What are Dysautonomia, EDS, and MCAS?

Dysautonomia: A dysfunction of the nerves that regulate non-voluntary body functions, such as heart rate, blood pressure, digestion, and sweating.

Dysautonomia comes in many forms, one of which is POTS (Postural Orthostatic Tachycardia Syndrome). POTS affects the way in which blood circulates throughout the body, specifically with postural changes.

Ehlers-Danlos Syndrome (EDS): This syndrome affects connective tissues, primarily the skin, joints, and blood vessel walls.

Mast Cell Activation Syndrome (MCAS): an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms.

All of My Symptoms

… Or at least all of the ones I can think of!

Dizziness/Fainting Upon Standing

You know that feeling you get when you stand up too fast? You know, where your head spins and you see stars for a few seconds? Well, Dysautonomia patients suffer from this every time they stand up. I can’t count the number of times of fainted in shower from standing too long.

Rapid Heart Rate

A normal resting heart rate ranges from about 60-100 BPM, with most people hovering right around the 65-70 zone. My resting heart rate on a good day is about 85 BPM. Oh, and when I go from sitting to standing, it jumps to about 130 BPM!

Chest Pain/Palpitations

This was one of my first tell-tale signs that something was wrong. On any given day, I deal with random, sharp chest pains and heart palpitations (though, these don’t hurt, they’re just annoying).

Gastrointestinal Issues

Bloating, nausea, constipation, and stomach pain… you name it, I’ve got it.

Headaches/Ear Pain

I don’t get headaches too often, but when I do, they’re pretty severe. I do, however, get inner ear pain on a regular basis.

Muscle/Joint Pain

Thank goodness I’ve found an amazing chiropractor because the muscle and joint pain that I experience because of EDS has been very hard to get used to.

Inability to Regulate Body Temperature

I’m either always cold or always hot. I’ve got almost zero ability to regulate my body temperature, so if you see me in a parka on an Autumn day, you now know why.

New Allergies

Before I developed MCAS, fruits like pineapple, mango, grapes, and apples were no problem for me. Now, I can’t eat any of those fruits without having an allergic reaction. It seems like I am always discovering new allergies.

Hives

My body is always in flight or fight mode, and essentially, any little stimulus can send my body into a mast cell attack. Shaving my legs, going outside, being cold, or even crying have been known triggers for crazy hives flare-ups.

Severe Menstrual Pain

There are so many things that can cause severe cramping during your period, like PCOS and endometriosis. However, my cramps have gotten progressively worse since I’ve gotten diagnosed. Let’s just say I’m pretty grateful for my heating pad.

Chronic Fatigue

I am literally always sleepy. Whether I’ve gotten 2 hours of sleep or 10 hours of sleep doesn’t really matter, and right around 2 p.m., you’ll catch me drinking my third cup of coffee.

Brain Fog

Okay, this is hands down one of the most annoying symptoms of my chronic illnesses. Forget fainting, severe body pain, and hives — this one takes the cake! I’ve become so forgetful and distractible in the last few months…

Wait, what were we talking about again?

Okay, so maybe this isn’t he worst symptom, but it definitely is a pain in the butt to deal with!