When You Can't Figure Out What Your Body Is Telling You

It’s hard, sometimes, to tell the difference between one illness and another, between one symptom and another. It’s a constant battle of “is this symptom from this illness or this one?” or “is this a different symptom or is it just presenting itself in a different way?”

It can be hard to find accurate diagnoses due to these problems, and hard to get doctors to listen to you.

I get facial numbness. I get droopiness in my face. I get muscle weakness. I get motor skill impairments. I get pins and needles all over. I didn’t know I needed to specify at the time that it was always on one side of my body.

My cardiologist heard this, heard that I had gastroparesis, and with my dysautonomia as well, sent me off to a neurologist to be tested for neuropathy. The results were underwhelming. My EMG was normal, I could walk fine, my face looked fine. I did not have neuropathy. I should get up, get more exercise. Maybe it was a lack of circulation.

It kept happening. I didn’t know what to do, but I couldn’t figure out what my own body was saying.

I have chronic, daily migraines, too. It never even occurred to me that these episodes were going hand in hand with migraines because I always, always had a migraine. I was always looking for something else. How is my stomach doing today? What’s my blood sugar like? Blood pressure? Heart rate? What did I eat? How much have I drunk? Did I miss any medications? All these questions bouncing around in my head, migraines never once occurred to me until I came across the term hemiplegic migraines.

Things started to fall into place.

It’s been probably four or five years since I started having these symptoms, and I’ve only just been diagnosed. It can be so hard to figure out your own body, your own symptoms, everything it is trying to tell you when there’s so much going on within it.

When I spoke with my doctor, she asked, “didn’t you bring this up with your doctor when you spoke to them about your migraines?”

I told her, no, I didn’t realize it was due to my migraines, but with treatment having brought my migraines down to 20 times a month, rather than daily, I’ve noticed these episodes are always paired with a migraine.

So yeah, it can be hard to figure out what your body is saying. The communication is off and you can’t figure out if the thing it’s pointing at down the street is the house with the blue roof, the red roof or the yellow roof. There’s too much to go through, and by the time you get to the houses, you might have even forgotten why you were pointed in their direction.

It’s… tiring.

But one day, someone might open a door to one of those houses and ask if you’re looking for them. And it’ll all make sense, and you’ll be so, so relieved.

I was.