This article is part of Health's series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
Pain is one of my very first memories. A stomachache, a Kmart bathroom, five years old, shaking. I remember the details. Not of the pain itself, but of the surroundings. The way the bright light made the white walls seem misty blue. The grimy floors, with trails of dirt closing in around a drain below my feet. The latch that didn’t lock quite right, leaving the door off-kilter.
I escaped my body as the pain twisted, stabbed, and burned, moving into my abdomen. It was something I would learn to do again and again for years as my body begged to be heard, sometimes in whispers and sometimes in screams.
The symptoms
At age 10, I started to have searing leg pain—not an ache or a throb, but something else. The sensations pulsated and burned, seeming to originate deep in the bones. My parents called it “growing pains.” I cried myself to sleep at night.
At 12, I had my first dynamite headache— not a migraine, not tension. It moved across my skill in bands from front to back, blurring my vision, making me wince. By 16, I had trouble controlling my bladder; the burning and urgency made it hard to sit through a class, let alone get through basketball practice.
I struggled to eat without bouts of diarrhea, so I’d frequently go all day without eating at all until 10 p.m. I had crippling period cramps that sometimes kept me home from school. I got rashes across my hands, too, which were so red and lined with cuts that people would ask me what happened to them. My symptoms became increasingly difficult to hide.
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My doctors ran lots of tests. Every time, they would return and happily declare me a normal teen. I was young and did not yet know how to be insistent, so I looked for answers on my own; I covered up my online searches for brain tumors and urinary frequency. I told myself that I was fine, as I learned to cut corners in life.
Sometimes I wouldn’t eat to avoid digestive issues. Other times I’d cut class, so I didn't have to sit through six of them in a row, my bladder in agony. I avoided group activities and public outings; I made many excuses.
I coped with the onslaught of symptoms, not stopping to ask myself if there was another way because I did not think there was one. But as I silently self-managed the pain in all its forms, I grew more anxious and exhausted. Sometimes you’re broken long before you finally break. And when the full-body pain and sensitivity began to appear in the summer of 2011, I could no longer manage on my own.
The onslaught
At age 19, the pain took over and started to ravage me, moving from one are of the body to the next. It began with searing flank pain I tried to fight through for three days before going to the ER. They tested me for a kidney stone that they could not find on a CT scan; they flushed my system with several IV bags of fluid. “You probably passed it in the ER,” a doctor said.
“Would I still be in pain, though?” I asked. I remember the shrug of her shoulders. “It’s possible,” she replied.
I left the ER, only to return several days later when the pain had turned to full-body sensation. I felt like a live wire; I could not lay flat without extreme discomfort. Placing my head on a pillow was impossible without exacerbating my stripe-like headaches, which had grown more pronounced and constant. That rip-roaring pain in my legs was suddenly ever-present. They ran more tests, then released me when they found nothing. The pain grew and grew.
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When I had been awake for almost 48 hours without sleeping, yet could not lay down at all because of the sensitivity, I went back to the ER again with skyrocketing blood pressure. This time, they admitted me to the hospital for one day. I had a few more tests and rounds of oxycodone. At this point, I was terrified that there was no end to how bad it would get, as “follow up with your primary-care doctor” was the dismissive line I’d grown used to.
I remember that one of my trips to the ER included a CT scan. I tried to steady my body to lay flat on the table, but the pain of the hard surface was so intense that I could not do it without shaking. When I returned, my doctor asked my parents to leave the room. “Do you drink?” he asked. Knowing my history included just one accidental glass of wine at church communion, I said no. “What about drugs?” No, I said again. They released me.
Have you ever wanted to escape your own body? There’s no rest in that. I wasn’t sleeping. I was having panic attacks. I stopped brushing my hair; a tangled knot beneath the layers grew to the size of a softball. There were dark circles under my eyes that looked like shiners. I developed chest pain, which shot down my left arm and mimicked a heart attack, and I was forced to go to the ER again. This time, they gave me Valium.
I kept wondering if, eventually, my only option would be to mask the pain like this. Maybe it would always be with me. Maybe it always had been with me.
The diagnosis
After months of negative tests, I was diagnosed with fibromyalgia, a chronic condition characterized by widespread pain, fatigue, plus sleep and mood issues. Ultimately, it was a possible diagnosis I brought to my own doctor in late 2011, with research papers and symptom lists printed off the internet in tow. It is a label of exclusion, bestowed when everything else has been ruled out, and one he was willing to give me. I knew it was close to an answer, if not a complete one.
Fibromyalgia is a constellation of symptoms, and the underlying cause is unknown. It often encompasses other labels as well, and I would be diagnosed with irritable bowel syndrome, interstitial cystitis, and premenstrual dysmorphic disorder for my digestive, urinary, and menstrual problems in the months that followed. I take a whole list of pills, including pregabalin for the underlying nerve sensitivity, nortriptyline for digestion (sometimes Linzess), Robaxin for muscle spasms.
At the time, part of me was just happy to have a name to call my pain, until I spoke with Anne Louise Oaklander, MD, over the phone in spring 2015.
I had become a health journalist, partly by fate and partly by chance. I had a solid understanding of the body’s mechanisms, which helped me manage my fibro symptoms while working from home. Dr. Oaklander, a neurologist and director of the nerve unit at Massachusetts General Hospital, was consulting on a story for me. She wasn't my doctor, but I mentioned my diagnosis of fibromyalgia off-hand, knowing it was connected to her research. She proceeded to stun me with answers I never thought I’d get.
She reminded me that fibromyalgia was not a diagnosis, but a label, and introduced me to the main subject of her research: small fiber polyneuropathy (SFPN), a condition that is also called small fiber neuropathy or small fiber peripheral neuropathy. Dr. Oaklander began to describe her patients to me for my story, their symptoms and their struggles, which were so remarkably similar to my own that I could hardly digest what she was saying.
“Fibromyalgia” was always a tricky resting place for me, knowing there was next to nothing known about the condition’s origin. I’d worked to accept that I might never have a real answer for my symptoms, that managing them was enough, and some people might not even believe the pain was real.
Finally, the right answer
After talking to Dr. Oaklander, I couldn’t help but try one more time to explain my pain. A few months later, I completed a punch biopsy, where a small sample of skin was taken from my lower leg using local anesthesia. It was mailed to Mass General for analysis, and I was finally given my first conclusive answers. There were so few nerve endings left in my skin—the nerve endings that regulate pain all over the body—that I was diagnosed with small fiber polyneuropathy in August 2015.
The condition affects the microscopic sensory nerves all over the body; the nerve ending damage could be caused by can be various problems including genetics, autoimmune conditions, injury, or diseases. Small fiber polyneuropathy’s connection to fibromyalgia started to boom onto the scene in 2013 with a swath of new research. In Dr. Oaklander’s study, published in Pediatrics, more than half of her previous young patients fit the diagnostic criteria for SFPN. She then published a prospective study that found objective evidence of small fiber polyneuropathy in 41% of the fibromyalgia patients studied, versus only 3% of matched normal controls.
Small fiber polyneuropathy is hard to diagnose, because most doctors do not order tests that might confirm it. “These are the axons within the peripheral nerve,” Oaklander explained to me, adding that "a doctor can examine a patient with small fiber neuropathy and say they look great.”
What those patients feel, like me, is pain and tenderness coming from the deep cellular level. Three-quarters have pain in the feet and legs. Many have surface pain. They do not like to be touched, and bed sheets can hurt, as can clothes. Deep pain is common, movement hurts, and the pain affects multiple regions of the body. The pain can also be classified as chronic; think constant stomach pains, headaches, muscle aches.
Those of us with small fiber polyneuropathy look fine. We’ve learned to mimic “normal.” But inside, the pain is chipping away at us. Every once in a while, I go from okay to sobbing in front of my fiancé. During my most painful episodes, my parents would ask why I was not more emotional in front of doctors. The truth is simple. Over time, I had stopped responding to the pain in obvious ways, so much so that you can’t access a typical pain response. I had learned, instead, to attempt to rationally articulate it.
As Dr. Oaklander explained to me, doctors are trained to look for signs of acute pain, but those of us with chronic pain may have blunted pain reactions. We have to learn to operate above distress, because we are constantly told we’re fine, just fine.
There’s peace in knowing
There are potentially millions of people living with undiagnosed SFPN, perhaps misdiagnosed, as I was. Importantly, these small-fiber neuropathies in kids and young adults are often autoimmune and potentially treatable with existing medications. I wish there was more awareness; I wish I’d had doctors who’d known what to look for. Had I received this diagnosis sooner, I could have started treatment sooner.
What would I advise others living with the kind of pain I had—or any other unexplained symptom? Look for a primary-care physician who is collaborative. It took me maybe a decade to find one I really love, and I wish I would have been more intentional about that search sooner. No one knows your body like you do, and a good doctor will listen to your symptoms, ask questions, offer suggestions, and see how you feel about the direction of your care. Make sure your doctor is asking you questions, just like you are asking them questions. If you leave the office feeling frustrated or dismissed, look for a new doctor.
Also, if you're not satisfied with your diagnosis, don't give up. Do research on your own, as much as you can. Suggest possible conditions to your care team, and ask for tests where appropriate. I never felt settled in my fibromyalgia diagnosis. I have consistently had to keep my eyes and ears open for potential conditions that fit my symptoms, and then bring them to my doctors. When you have a difficult condition to diagnose and understand, it's even more critical that you be active in your own care.
I feel more sane and self-assured now that I have a conclusive diagnosis. I don’t worry that I am making a big deal out of pain, that I’m just too weak to handle it. When you don’t have answers, there is always a little voice inside that asks you if you are blowing things out of proportion. When few doctors validate what you’re feeling, it’s a horrible mind trap a lot of us with invisible illnesses cannot fully escape.
I still have problems today. Last year was one of the worst yet, with regular crippling abdominal pain attacks that would leave me screaming and crying. Sometimes it’s exhausting. Sometimes I am angry. But ultimately, I don’t know who I’d be without pain. Pain is as ingrained in me as my oldest memories or my closest friends. I can’t deny that it’s molded me into the person I am today. However, I wouldn’t wish it on anyone else either.
I still remember that little girl I used to be, quietly weathering a storm of symptoms. She had no way of understanding what was happening deep inside her own body, that everyone didn’t feel the burning, aching, stabbing, and gnawing. Perhaps there are thousands more like her, but so few know where to look.
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