Intuition & the Patient

Have you ever had an intuitive thought or gut feeling that you ignored?

Yeah?

And how did that work out for you?

If you’re anything like me, ignoring your intuition is never a good thing. I’ve always been sensitive to what my intuition is telling me. I think that comes from being the daughter of a LEO. My dad always encouraged me to listen to my gut. To trust it and myself.

And for the most part, I do. If I’m in a situation and I get a prickle of “knowing,” I tend to remove myself from that situation post haste. Years of trial and error have taught me that much. The one area I have always struggled to trust myself and follow my intuition though?

Medical care.

I know. I KNOW.

If there’s one place we should trust our gut, it’s medical care. Especially when medical error is the third leading cause of death in the United States (Reference https://www.hopkinsmedicine.org/news/media/releases/study_suggests_medical_errors_now_third_leading_cause_of_death_in_the_us)

But hear me out. We’re told from childhood to listen to our doctors; that they have education and training that we don’t have. We’re conditioned to trust the degree over the person. We are expected to hand over our autonomy at the door, and even though they spend only moments with us, to ignore our day in/day out experience in our own bodies. They “discuss” our ailments and options with us, make an “educated” decision on diagnosis and treatment, and send us on our way. And because we have been conditioned not to ask questions, we typically take that diagnosis and prescription and absorb it into our routine. To a large degree, we ignore the fact that doctors are human and capable of error. Is it any wonder how often we hear about doctors with “god complexes” even though science is never truly settled and they “practice” medicine?

Have you ever questioned one of your doctors? I don’t mean basic questions about symptoms. I mean, actually questioned or challenged something your doctor has told you.

How did that go?

Did he accept the questions graciously and explain? Or did he get frustrated that you called his “expertise” into question?

I have experienced both, but the second has been far more common. As someone who finds comfort in information, I research everything.

Every. Thing.

This insatiable need for information has put me on a collision course with the experts in my life on more than one occasion.

Story time:

At 30 years old I finally got a tentative Ehlers Danlos Syndrome diagnosis after doing exhaustive research on how all of my various symptoms connected. The initial nudge toward Hypermoblity Syndrome was provided by a PT and my mom’s podiatrist, but the aggregate research was all me. I printed out a stack of articles, diagnosis criteria, comorbid conditions and made an appointment with my (then) GP. I was hesitant and a little concerned about how he would take this “self diagnosis” but surprisingly, he took it in stride. He read all of the information I gave him and agreed that based on what I had brought that I likely had been suffering from EDS my whole life. He agreed to put it in my chart (and my mom’s, because genetic) but warned me that without a geneticist’s confirmation, it wouldn’t hold much weight.

Encouraged by his openness to the information, I believed that we had come to a new place in our doctor patient relationship. It surprised me more than anything, because this was the same doctor who waved off my concerns about toxic load in vaccines and wanted to argue when I requested a modified schedule for my daughter. I stood firm on that fact that we would be vaccinating, but preferred to space out the doses. It took awhile, but he relented and we spread her vaccines out over a longer period so that her little body wouldn’t be overloaded.

Somehow, it’s easier to listen to my instinct where my child is concerned.

But I digress…

Several months into my EDS diagnosis, and in the midst of a severe flare, I was also diagnosed with Fibromyalgia. Intense joint and muscle pains were my daily companions. Though I was already on a medication for anxiety, my doctor recommended Cymbalta (a psychotropic antidepressant medication) for the musculoskeletal pain. At the time, it was still fairly newly approved for pain, and constantly coming across the airwaves with the tagline, “Depression hurts. Cymbalta can help.” He told me that it’s also regularly prescribed for Generalized Anxiety Disorder, so I would hopefully get a double benefit. I was concerned about how it would affect my libido, having taken anti-anxiety meds in the past that had caused problems. He waved off my concern, stating that “this one doesn’t decrease libido.” He gave me samples to take home so that I could begin the medication immediately, and a script to be filled. I felt a little trepidation adding another anxiety medication, but figured that it would be worth it for a reduction in pain.

When I got home from the appointment, I popped the first pill and went on about my day. Within an hour I started feeling strange. I got a sensation on my back like there were ants crawling up and down my spine, and I kept moving my arms because they felt restless. Disconcerted by the physical sensations, I grabbed my laptop and started researching. I came across story after story of adverse Cymbalta reactions with very little digging. Many of the people talked about horrible zapping sensations in their brain when they missed a does or tried to discontinue. I was bothered enough that I decided not to continue the sample doses. I already had a follow up appointment scheduled so that we could assess how the medication was working. I went into the the appointment, armed with my research and my personal experience. I was confident because this was the doctor who had heeded my research previously.

I was wrong.

When he entered and asked me how I was doing with the medication I told him everything. I explained the crawly sensation and the restless arms. I showed him what I had found online. He scoffed. He told me not to believe everything I read on the internet and that I hadn’t given my body enough time to adjust to the Cymbalta. I asked about the discontinuation symptoms. He discounted them and told me that I wouldn’t need to worry about that because I would likely be on the medication forever. That didn’t sit well with me, but I ignored my own concerns. He told me that it takes at least two to three weeks to adjust and start feeling the benefits, so I needed to stick it out at least that long. I left that day with a fresh script and a mollified intuition.

In hindsight, I believe ignoring that gut instinct was as dangerous as walking down a dark alley with earbuds in. It certainly changed the next seven years of my life.

Over the next several posts I’ll be sharing the side effects I personally experienced, the effects of a foolish decision to cut my dose in half, and how I finally took control of my health and began the process of stabilizing and breaking free.