Getting diagnosed with Dysautonomia was less of a grand revelation and more like a yeah, well, okay I knew that but I didn’t know that was a thing. It was actually getting the P.O.T.S diagnosis that opened us up to the realization that everything that was effed up in my body was all actually one problem and not 40 problems.
Dysautonomia is the dysfunction of the autonomic nervous system.
So let’s break that down, mmkay?
Dys – To not
Auto—Automatic (autonomic system—that controls everything involuntary that your body handles)
Dysautonomia = shit that should work (auto-nomia) does not work (Dys).
And there you have it. So why did it take 22 years, 80 hospitalizations and about 50 specialists to land on something so obvious? Let’s take a look at just some of the symptoms of this rare disease:
(LETS MAKE THIS A DRINKING GAME–FOR EVERY SYMPTOM YOU HAVE, TAKE A SHOT. Yay! Alcohol poisoning. That should be fun with some of these. )
- Fainting or near fainting
- Generalized weakness
- Shortness of breath
- Chest discomfort and/or pain
- Loss of sweating
- Excessive sweating
- Loss of sweating and excessive sweating
- Delayed gastric emptying
- Bloating after meals
- Abdominal pain
- Bladder dysfunction
- Pupillary dysfunction
- Blurred Vision
- Tunnel vision
- Sleep disorders
- Myofascial pain
- Neuropathic pain
- Exercise intolerance
- Blood pooling in limbs
- Intolerance to heat
- Feeling cold all over
- Low blood pressure upon standing
- Cognitive impairment
- Narrowing of upright pulse pressure
- Cold hands
- High blood pressure
- Numbness or tingling sensations
- Reduced pulse pressure upon standing
- Low back pain
- Aching neck and shoulders
- Noise sensitivity
- Light Sensitivity
So, needless to say that patients with this disease have varying symptoms. And sometimes they have ALL of these symptoms. So it’s easy enough to see why doctors misdiagnose/go crazy trying to figure out how their patient is still standing upright.
Participating in some of the discussions on POTS support groups, I’ve seen a fair amount of patients actually get angry at another for having different symptoms within the same diagnosis. Patients often feel like they’ve had to fight and wait and beg for their diagnosis so they actually get defensive over the shaping and defining of the disease.
So if you are a patient with autonomic dysfunction please try to understand that you are just as poorly wired as every other patient with dysautonomia. So don’t get angry about it. That’s something you can actually control!
Do we need a repeat lesson here?
Dysautonomia—Everything is fucked up.
Please try and remember that we all have at least one thing in common: elevators are a terrifying experience.