I’m just a girl – Diagnosing part 5 (Small Fiber Autonomic Neuropathy)

Numbness on the outside of my right leg. That was the starting point for my entire Small Fiber Autonomic Neuropathy journey. It’s a long one. Hold onto your hats and cozy up with a cup of tea. Here we go:

I had recently come back to the United States after working overseas for a few months. My return was fairly sudden. My job wasn’t living up to expectations, my grandfather and father both received dramatic medical news, and I had spent the last two weeks not fully recovering from a battle with a rancid can of tinned beans. Getting my bearings by hunkering down with family for awhile was my best option. 

As I came out of the fog around my return, I received a request for a job interview on the other side of the country. I was feeling good, motivated, and happy. Jumping on a flight, I settled in for a 6-hour journey to my next possible adventure. About halfway through, I had some pain and numbness on the outside of my right leg. Assuming it was typical tall girl squished into a minuscule space for hours type pain, I walked around the plane a few times. Did some seated massaging and stretching. It stopped bothering me. 

Everything went well on my trip. The occasional ache and numbness popped up, but never to the point of affecting my day. Flying home, the ache got deeper. It was officially bothersome. I’ve traveled around most of my life. So, I’m no stranger to airplane body hygiene. Constantly shifting in my seat, stretching, drinking lots of water, walking down the aisles… yep… I’m THAT person. It’s served me well. But, there’s always the scary knowledge that a blood clot could form. After traveling for almost 24 hours on my way to the U.S. and following that up with crisscross flights coast to coast, I had to entertain the possibility that a clot was causing my pain. 

I went to a general family medicine doctor. At the time I didn’t have a primary care provider. He listened to my description of the issue, gave me a quick once over, and declared that I had a pinched nerve. His solution was simple; stop crossing my legs when I sat down. If it was painful, take some aspirin and apply a hot compress. Okay. I love a simple solution. So, I did as he said.

After 7 days or so, the numbness and ache had spread. It was taking over more of my primary leg and starting to show up on the other one. I waited it out for a few more weeks, until standing was getting painful. Heading back to the doctor, I hoped for another simple solution. Preferably one that worked. He continued to press the pinched and aggravated nerve theory. He said there was nothing I could do about it other than what he had previously mentioned. Thanks, doc.

Around this time, I was experiencing a few other symptoms that I didn’t know were related. Dizziness upon standing, heart racing, and low appetite. Being wary of doctors and finding them generally unhelpful, I ignored and put up with my symptoms as best as I could. I moved to a new state and started that chapter of my life. 

Let’s skip ahead a few years to when I’m about six months post my first migraine attack (You can read about my Migraine and POTS journeys in earlier articles). The numbness and pain had migrated to other parts of my body. It was most noticeable in my legs, feet, arms, and hands. With everything going on, I was finally sent to a neurologist at a major university hospital.

Being in the midst of my body’s first real breakdown, and finding little relief or help, I wasn’t very hopeful. Fortunately, the neurologist listened to me. He did a thorough workup, ordered lots of tests, and was comfortable prescribing pain medications. There aren’t many tests for Autonomic Small Fiber Neuropathy. Doctors basically just poke at you with sharp objects to rate your numbness.

So, I got poked. A LOT. My numbness was severe, but the pain was invisible. It is very difficult to explain how an area can be numb and be in extreme pain at the same time. I did nerve conduction testing, where they hook electric shocking needles to various points on your skin and turn up the juice. I also had two skin biopsies, where they punch small holes in layers of your skin in order to look at the number of nerves in each section. Both tests were, my favorite medical term, inconclusive!  Two follow up biopsies years later did produce conclusive results.  

After all the test, my other conditions, and looking at my symptoms, the doctor said that the small fiber nerves throughout my autonomic nervous system and skin, were misfiring and dying. Being that it is classified as a rare condition and it is, once again, invisible, there wasn’t much he could do. Really the only treatment was pain and symptom management. 

We all know, being told that there is no treatment for your ailments is devastating. That frustration was doubled down on by not having found a cause for the disease. I suspect it was caused by either my wisdom teeth removal or a bout with light hypothermia, but there is no way of being certain. Most neurologists have no interest in the condition. There’s no money being pushed into researching it. There are no cures on the horizon. People can’t see it. They don’t understand it. It’s not a sexy disease.

Autonomic Small Fiber Neuropathy. It feels like this image: A sufferer laying down. Her skin slowly being flayed off her body, bit by bit. The knife is on fire and stabs her between slices. As her nerves lay exposed to the elements, a clamp is placed around each appendage and twisted at different speeds. Every breeze, touch, and drop of water feels like hornet stings as they barely touch her. She alternates between her skin feeling nothing and feeling too much. When she stands, her feet barely notice the floor. She bruises, gets cuts, and breaks bones from a lack of feeling. Her lungs burn when she stresses them. Her eyes get dry. Her heart beats oddly. She can’t regulate her body temperature well so she is usually sweating hot or freezing cold. She’s always nauseous.

I pushed for that second set of biopsies. Telling my new neurologist about my worsening pain and frustration, he agreed to the test. When they got my results back, and saw that my nerves were dying, my doctors actually seemed surprised. They said that this was good news because I finally had proof that it wasn’t all in my head. Even though I had already gotten an official diagnosis, the condition is so under researched and invisible that my own doctors had gone years not fully believing me.  

I still scour medical journals and the internet for news of experimental nerve regeneration results and treatments. I’m the one who has to manage my symptoms and push for continued interest from medical professionals. With this disease, getting a diagnosis has only been the tip of the iceberg. It’s a mountain of a problem and I’m scaling it alone.

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