Pills for Breakfast: A Pain with No Name

Pills for Breakfast: A Pain with No Name

500px-Nuvola_apps_filetypes.svgThe 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:

  1. A small ulcer in my intestines.
  2. A rib injury.
  3. Tietze syndrome.
  4. Costochondritis.
  5. Shingles without a rash.
  6. 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.”

Oh.

Wow.

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

Crystal Lindell

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.

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Dear Crystal

Love your comment about Pain with No Name.

This is the most significant comment relating to pain or illness I have read for a long time.

Naming or constantly changing the name of pain or illness sends to the person in Pain or ill a very powerful message.

“We do not understand the cause of your pain illness and do not have a cure so we are going to change the name to confuse you and at the same time appear to be doing something significant in understand the pain you are in.”

This creates deep within a persons mind – sometimes they are aware sometimes not. “No one understands and therefore no one can cure me.

Best wishes

Peter Smith Talking Cures

Crystal, I just had to write because you and I have extremely similar pain: right side ribcage pain. Mine is still officially undiagnosed, but my GI believes that I have a digestive disorder called Sphincter of Oddi. There are 3 levels and the third is just pain without unusual lab results. Might be something to look into. My pain is all day every day.

Because I don’t have a definitive diagnosis, I am always keeping and eye on others with like pain. Thanks for the piece and hope we get some answers soon!

John Quintner, Physician in Pain Medicine

@ Crystal. Our obsession with finding names for whatever ails us is not a new phenomenon. In this vein you may enjoy this observation by the famous author George Orwell (1934):

“It is devilish to suffer from a pain that is all but nameless.
Blessed are they who are stricken only with classifiable diseases!
Blessed are the poor, the sick, the crossed in love, for at least other people know what is the matter with them and will listen to their belly-achings with sympathy.”

Thank you all so, so much for all of your caring comments everybody! I will definitely take all of this advice and these suggestions to heart as I figure out what the next steps are in this journey.

I especially LOVE the idea of naming the pain! “Dave” was really clever. I’ll have to give it some thought so I can pick out just the right name for my horrible pain. 🙂

— Crystal

Bonnie

I know this sounds weird but I hope this helps you find your answers. The new research coming out on things like fibromyalgia, arthritis and myalgic encephalitis all of which have severe pain as one of their conditions is that we have small fiber neuritis that is at the very tip of the nerve there is some kind of “over reaction” or “abnormal reaction” the cause is being located in the brain near the hypothalamus (people with PTSD break this part of their brain easily, ask any soldier) and this in turn sends or creates a lactic acid build up in the muscles sending the message either badly or not at all. Now I am not a Dr or scientist I have just read about 300 papers in the last year in which this new type of investigations are taking place. Your right what do you do if you don’t have a name for it ? I called mine Dave and I worked my way through each pill, ten’s wheelchair, heat cold spray one at a time with the help of a GP and a pain specialist until I got a combination balance. I believe what you have doesn’t have a name yet, but it does not mean you can’t receive care for it.

John Quintner

@ Crystal. Your neurologist should have also told you that a negative result from conventional electrodiagnostic testing (EMG) does NOT rule out a diagnosis of nerve pain (neuralgia). Such testing cannot detect abnormalities in small diameter nerve fibres that transmit information about tissue damage. I suggest that you check this information with your neurologist.

Ali

Had something similar , turned out to be misalignment in the thoracic spine and back rib attachment. Good luck!

E11years

Crystal

I can certainly relate to your on going quest to first, get some relief, get accurate diagnosis, find others with similar condition (for support, suggestions, etc)….I have a form of neuropathic pain as well, the Trigeminal nerve (left side of my face), and for 13 years now, have been trying to manage the pain instead of it managing me.

I have heard of that test, as it was “mentioned” to me as well over the years…but in the back of my mind,I was afraid that if their test didn’t pick up on the actual nerve problem, they would just dismiss me and my pain and tell me it was all in my head (or face). I had five facial reconstructive surgeries in one year, complicated by bone and metal implant infections, so chances are, the nerve has indeed been severely and permanently damaged (in surgery notes, he discussed carving around the major nerve). But my point to you, don’t let this one test mess with your head…nerve pain symptoms are pretty self explanatory. It doesn’t mean there isn’t a problem, because obviously, you are in pain, and as I have said many times, how on earth could i make up this kind of pain or symptoms, as you don’t just wake up one day and decide to pick a part of the body causing intense crushing, shocking or searing pain.

I always enjoy your articles, as I can always relate. I appreciate you putting yourself and your struggles out there to share with the rest of us. Take care
E11

This is what a good Internist if for. Two of my diagnoses were finally made by a physician specializing in internal medicine.
JOY