The day I first felt the now infamous pain on my right side, I tried to ignore it.
The day after that, I went to the emergency room.
Since then, a series of doctors have looked me straight in the eyes and told me, with all the sincerity and authority they could muster, that I have:
- A small ulcer in my intestines.
- A rib injury.
- Tietze syndrome.
- Shingles without a rash.
- Intercostal Neuralgia (IN) with no known cause.
Now though, like all the others, it seems as though it’s not intercostal neuralgia after all — at least according to my latest test results.
The doctors had been leaning toward that diagnosis, which basically means nerve pain in my ribs, since about April.
Since then they’ve given me four different nerve medications, two nerve blocks, and piles of pain pills. Not once in the last eight months though did any of them think to give me an electromyography test (EMG).
Like most people, I had never heard of an EMG until my neurologist brought it up to me last July. And when he did he was stunned to learn that I hadn’t been given one by any of the specialists I had seen up until that point. Alas, he brought it up during my very last visit with him, because just days later I was moving two hours away to live with my mom.
However, he did include a suggestion for the test in his final patient note, and gave me a copy to show my new doctors.
Finding a new doctor is difficult though, and the first primary care physician I saw was so horrible that I never went back. It took another few weeks to get an appointment at a different facility with a different doctor, and then from there I had to get referred to a new pain specialist — who couldn’t see me for over a month after that.
When I did get in to see her, she finally referred me a new neurologist, who finally ordered the EMG — in December, just five months after the first neurologist said I needed one.
From what I can understand, an EMG is basically a test that tracks the nerves. Based on personal experience, I can tell you it involves small electric shocks and some pricks with small needles.
During the test, the neurologist who was performing the EMG told me that the results would show for certain whether or not I actually had intercostal neuralgia.
Wait. What? For certain?
I almost feel off the table while the needle was still inside me.
This whole time, there was test that could show FOR SURE if I was getting the right treatment, taking the right pills, and seeing the right doctors?
How, no, why did this take so long? I should have gotten one back in April when they first told me I probably had IN.
Part of me was excited about the idea of knowing for sure whether I had intercostal neuralgia or not, but the other part of me was scared. The outlook for IN isn’t so great, and all the doctors I had seen up until this point were basically of the consensus that I would either “wake up one day feeling better” or “I wouldn’t get better.”
However, I had yet to meet anyone with IN — in person or online — who “woke up one day feeling better,” so the odds didn’t seem to be ever in my favor.
Anyway, it took two days to get the results, and when my new neurologist called to tell me what they found, my brain stopped to focus on her words.
“Your EMG came back normal. There’s no sign of any nerve problems.”
After all this time.
I do not have intercostal neuralgia.
The sentence sounds almost foreign to me.
I emailed my neurologist the next day to triple check that the results meant what I thought I they meant. In short, they did.
“You are right that the EMG was normal and did not show evidence of intercostal nerve injury or injury of the nerves in that region, so that diagnosis [of IN] is unlikely,” she wrote.
So here I sit — still in extreme pain, still getting through each day with prescription-strength narcotics, and still unsure of what exactly is attacking my body.
One of the specialists I met along this journey told me that I shouldn’t focus on naming my pain, but instead on getting better. He gave me this strange exam room pep talk, and explained that as long as all of the “worst-case scenario” tests came back negative, I should just try to get past this as quickly as possible and then move on with my life. As if having enough gumption could cure me.
How I desperately wish that gumption could cure me.
As it turns out though, naming this torturous pain seems to be of the utmost importance.
Without an official diagnosis, it’s as if I don’t have permission to be as sick as I am — if the doctors haven’t figured it yet, it can’t really be quite that bad.
And, without a name, I can’t find others going through the same thing — an extremely important phenomenon when you’re in a dark world of unknowns and you’re looking for help to find the right path.
As it turns out, names also help you navigate the very medical world that can’t figure out what to call my pain.
For them, it’s all about the specialists. Nerve issues? See a neurologist. Intestines? That’s a gastroenterologist. Overuse injury? Perhaps you need a pain specialist.
But when it’s nothing, when you have no idea what area of expertise you fall under, then what?
I wish with all my heart that it really was “all in my head” or “not that bad” and I could just set my mind to feeling better. I really, really do.
But that’s not the case. Instead, I keep waking up every single day feeling like someone just dropped a brick on my ribs, and I have no idea why.
I have a feeling though, if there was a “why” there would be a “treatment” or a “cure” right next to it.
Crystal Lindell is journalist who lives in Byron, Illinois. She loves Taco Bell, watching “Burn Notice” episodes on Netflix and Snicker’s Bites. She has had pain in her right ribs since February 2013. It is currently undiagnosed.
Crystal writes about it on her blog, The Only Certainty is Bad Grammar.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represent the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.