October is Dsyautonomia Awareness Month

Since it’s October, a skeleton theme sounded like a fun idea for a Dysautonomia post. Okay, I admit my idea of FUN may be a bit dark and twisted. But humor is my best defense up against a life limiting chronic illness. Sometimes when we talk about POTS we may be inclined to only talk about our heart rate. But folks with dysautonomia can have a variety of symptoms and they may vary on a daily or even hourly basis. That’s because our autonomic system literally touches every aspect of our body functions.

Many of us have GI issues like IBS, gastroenteritis, constipation and or diarrhea. Some dysautonomics have syncope and frequently passout. While others tend to get light headed … dizzy .. or gray out when upright. Exercise intolerance makes it sound like we are somehow lazy or deconditioned, this is not the case. And while exercise can be an asset for some, for others it makes our symptoms much worse. Which leads us to chronic fatigue as another symptom. It’s not about being a tad tired. It’s full on bone crushing exhaustion. And it can hit at any time of the day.

Brain fog can present as slower cognitive processing time or trouble with finding the right word. Sometimes concentration can be an issue or memory recall. It can be hard sometimes to discern if you have a bug or if you are having a flare with symptoms that mimic the flu. You may feel chills or a hot flush, aches and pains or exhaustion as one would expect if they had a really bad cold or virus infection.

Pain can vary in both the location and intensity. Some folks get really bad migraines or trigeminal pain. Coat hanger pain refers to a common (and intense pain) that shoots down both shoulders and up the neck. But sometimes pains come from just doing “ordinary things” .. taking a step that was slightly off center, reaching for something and “pulling a muscle”. Since many POTS people are also hypermobile EDS, pain, sprains and strains are common and trigger a plethora of other symptoms.

Blood pooling is another common condition with POTS. Basically the blood doesn’t return back to the heart efficiently when we are standing. So we may get swollen ankles, purple feet, or some of us ab pool (blood swells in our tummy) causing us to appear quite bloated especially by the end of the day.

The most often discussed “symptom” of POTS is of course that we get tachy when we are standing. Our heart goes 30+ points higher than our individual baseline .. and it stays that way. Until we sit back down. Fold in the various other arrhythmias like premature ventricular or atrial contractions and you get one hella holter reading.

As we shed light on the complexities of dysautonomia this month, let’s also make an effort to shine a light on the lives of those living with it. When someone you care about is navigating the labyrinth of dysautonomia, their world may often shrink as symptoms flare and social interactions become limited. The simplest act of reaching out, a heartfelt message, or even just a friendly call can make a world of difference.Together, we can create a more compassionate and inclusive community, one conversation at a time. 💙 #DysautonomiaAwareness