I'm Tired of Doctors Dismissing My Unexplained Chronic Pain

Doctor making notes on laptop.
Doctor making notes on laptop.

My experience with chronic illness began my freshman year of college, more than 10 years ago now. I was lucky that my dorm was literally across the street from the most wonderful rheumatologist in a research hospital who, after about six months, diagnosed me with fibromyalgia and myalgic encephalomyelitis (ME/CFS), and a few years later, costochondritis (inflammation of the chest wall – more about this later).

I was lucky — some people spend years hunting for a diagnosis. My doctor was a problem solver who was able to talk me through the testing process, and would even call me personally to find out if the medicine we were trying next was helping. He never made me feel like my symptoms weren’t valid, or in any way minimized the severity of what I was experiencing. He was kind, and when he did give me the “final/for now” diagnosis and I asked him what it meant, he said, “Well, you’re put together funny, and we don’t really know why.” (At least he was being honest!) We both laughed, because it sounded so absurd, but also so accurate for the scattered symptoms I have on a daily basis that don’t fit into any other known diagnostic category. He laid out a plan and we moved forward.

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When I was graduating, I asked him for recommendations on doctors I could see to continue monitoring my care once I moved back home. My diagnosis isn’t something you can treat for a few years and it will go away, it needs to be “managed.” I needed someone that could make sure if symptoms progressed or changed, there would be an evaluation of the medicine I was being prescribed, and any testing that may be required to refine the diagnosis would be pursued. There is always a chance that my symptoms are really something more severe, but those symptoms or positive test results haven’t shown up yet. I didn’t know at that time that I had gotten one of the best diagnosing doctors for my situation, by luck of the draw.

Since leaving this doctor’s practice, following his recommendation of what team of doctors to set up after college, I have been floundering to find a care team that can meet my needs. My rheumatologists since then have seen me every six months for medicine refills, checking off their boxes on the computer screen without any guidance. If new symptoms arrive, their response is, “I don’t deal with that.” In short, the healthcare system isn’t really set up for patients like me. My recent experience has encapsulated how flawed the state of our current healthcare system really is, and how the deck is stacked against chronic pain patients without a clear diagnosis.

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One of the worst of my constellation of problems is costochondritis, or inflammation of the connective tissue in the chest wall. Important note here to understand — there is no real test for this condition. If you have pain in a certain area long enough, they will do some imaging and if it comes back clean, you get labeled with this. Even though I have this on my charts, no one ever looks into why it feels like there is a boa constrictor around my ribcage at all times. In eight years, I have seen countless doctors and only three have been interested in even touching my rib cage. My organs and bones seem to pass any tests, so it’s labeled a “soft tissue” issue, and therefore there’s really no solution other than “take ibuprofen” and “don’t irritate the area.”

The past few years, these problems have escalated and began to cause “attacks” for lack of a better term, of very acute, specific, directional pain which radiates throughout my ribcage, back, shoulder and down my left arm. At the worst points, it hurts to breathe and I end up only taking shallow breaths, and I can’t really do much with my left arm without excruciating pain. (I’m left-handed, to make all of this worse.) The first time this flare up happened, it scared me so badly that I went to my GP and she thought I was throwing a blood clot or having a heart-related problem. After being sent to the ER later that afternoon for emergency attention, more tests and imaging, I was told that there was nothing wrong with me, and since I was already on pain medicine they recommended Tylenol and rest.

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I had never been to that ER except for my appendicitis when I was 16, yet I was subjected to what I was told was “emergency room policy” about giving any pain medication to anyone that was already on any other pain medication. (Mind you, I was not and am still not on opiates. Every time I go to pretty much any doctor, I ask how I can get off of so much medicine.) Because of the treatment I received that day, I refuse to go to emergency rooms for this type of pain, out of fear of doctors that have told me I was exhibiting drug-seeking behavior because I got upset when they wouldn’t give me anything for the pain. My pain was a 10/10 on the silly “pain scale” at that moment – who wouldn’t be upset to be told they were being sent home with no answers or relief?

I have had a handful of these episodes since the first one a few years ago, but they keep getting worse. I have tried to find things on my own that help to mitigate the pain or just have ceased any activities that could lead to too much reliance on core strength, or reaching above my head, or lifting much weight at all.

One week ago, I was having trouble falling asleep and I rolled over too quickly trying to get comfortable (yes, I have to gingerly roll myself over so I don’t twist awkwardly and cause this to happen). I felt that horribly familiar “pop” and pain shoot up my left side. The pain didn’t subside, so I went to see my primary doctor. They sent me for x-rays and referred me to a couple of specialists, as well as prescribing strong pain killers and a steroid, both short term, stop-gap measures. There was no real action plan other than “here are a few referrals, good luck.” I’m on day four of these medications and the pain is at the same level it was when I saw my doctor, plus the x-ray came back normal, as I had feared. It doesn’t make sense to healthy people, but undiagnosed patients hope beyond hope that something will show up on tests, so the doctors can identify the problem and do something.

I called to make specialist appointments, and they cannot see me for months. I was told by one office to send my records over and the doctor would decide if he could help. My primary said they cannot help me to get a faster appointment because they don’t know who would take my insurance so I would have to call myself. The receptionist literally told me to print out a Google search of practices and start calling. Here I sit, a week since it felt like my rib popped out of place, and no one seems willing or able to help me feel better or find out if there is anything systematic going on to cause this severe pain.

What I have doesn’t really have a specialty dedicated to it; a search returned three doctors within a 50-mile radius that focus on rib or chest wall conditions – and this radius includes one of the three biggest metropolitan areas on the 1-95 corridor. It also doesn’t have a treatment protocol that the health insurance company has approved, so I am someone that gets passed around, in limbo, waiting. In reality, I’m fighting to stumble on the right person who will take up my case again and help me figure out what is going on. Shuffle the deck and try to find the card you need, while blindfolded.

I am not advocating for any specific healthcare plan that is out there in the political realm. I am begging for a shift in our way of thinking about healthcare. I am begging for a system where it doesn’t take six months to get an appointment with a specialist and where it doesn’t take several days to get insurance to agree to cover a test because it doesn’t follow the protocol. I’m begging for a system that doesn’t see prescription pills as a transactional solution for all of your problems. I am begging for a system that looks at the whole person, instead of a myriad of doctors that only look at one piece of you and then pass you around or dismiss you if you don’t fit into their specialty.

We need to remember that healthcare is about making people better, not about giving out pills that will help the symptoms but not search for an underlying cause. I challenge physicians to do a self-check of your approach to patients with chronic pain, or any other symptoms that don’t fit neatly into a known diagnosis, no matter your specialty. If a patient raises a concern that doesn’t sound like your purview, give them a real referral to someone that can help. Be willing to think outside of the box, not just check the boxes and move on to someone who is easier to deal with. We have been dealt a bad hand, but you can help us cheat the house.

Read more stories like this on The Mighty:

The Struggle of Coming to Terms With Having an Illness Since Childhood

How It Feels When My Chronic Pain Is at a 'Worse Day' Level

50 Ways to Support a Loved One on a Chronic Pain Day