Let's Spin the Wheel of FND! Is My Lifelong Chronic Pain Physical or Confused Brain Activity?

When I was six or seven years old, I woke up in the middle of the night screaming in pain. My mom was naturally panicked because nothing she did helped the excruciating pain in my legs. Calling my pediatrician gave her an answer and a way to help that seemed to work.

He said it was growing pains, which made sense at that age. His advice was to wrap my legs in warm, wet towels. The heat seemed to soothe the pain, and I was able to get back to sleep.

This pain returned periodically throughout my childhood and into my teen years, and the solution was always warm towels or a warm bath.

However, the pain persisted long after I finished growing. I stopped growing at fourteen years old, but this pain kept returning. I distinctly remember waking up nearly screaming in pain at seventeen years old and my dad utterly panicked as he tried to help.

For some reason, it never occurred to me that as the pain persisted into my twenties and thirties, these were not growing pains and I should probably see a doctor. Especially since nothing I did eased the pain—NSAIDs, heat, cold, movement. Nothing works.

After my functional neurological disorder (FND) diagnosis, it occurred to me that my persistent pain might have something to do with it, though I thought it was likely a physical issue because it started so young. It's unusual for FND to display in young children, so it beginning at six years old would be unlikely.

However, the abusive environment that likely at least contributed to the development of FND surrounded me from birth, so this wouldn't necessarily be impossible.

My psych med provider told me to see my PCP (primary care or family doctor) who then referred me to neurology. I told my PCP I wanted a new neurologist since the last one was frankly an asshole, and my PCP had no problem with that.

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The new doctor was fantastic. I told him about the history of my pain and the FND. He asked detailed questions about all of it, and it was obvious he was knowledgeable about FND and how it works.

When a new medical issue pops up for someone with FND, the protocol is to take it to the correct specialty, even if that's the PCP, and treat it as a rule-out diagnosis. That means an examination to check if it's a physical issue that needs treatment through that specialty, or if everything is normal and the treatment needs to happen through the behavioral health team.

Fortunately, he was able to do the nerve conduction study right then. No surprise to me or my husband, the results were normal. In fact, the doctor said my nerves were working perfectly. So, yet another symptom to take to my behavioral health team: my medication provider and my therapist. However, this is the first FND symptom to get a rule-out diagnosis from a specialist since my hospital visit in October 2023.

In the past, before my diagnosis, this would have been a brush-off by whatever doctor I may have seen. "Your tests are normal, it's all in your head" or something about wanting attention or faking it, or in the emergency room, they assume I'm trying to get pain medication or it's just anxiety because I have mental health disorders.

This time, though, my doctor said, "Well, since this is all normal, it's something you need to take to your behavioral health team. They'll help you with this issue." It was not a lack of diagnosis or brush off. It was a confirmation of a suspected outcome with a place to go for treatment.

I left feeling hopeful instead of frustrated and hopeless. The shocking change in how I felt after the appointment left me in disbelief.

All this was made possible by a nurse in the hospital back in October 2023 sitting with me to listen to me ramble about all the strange health problems I've had over the years and that the issue I was experiencing at the time felt like yet another one. Within two hours, I was talking to a psychiatrist from his home on his day off and two other doctors examined me at the same time. By the end of the day, I had all three doctors telling me about a possible diagnosis of functional neurological disorder, what it meant, and what the process would be to achieve that diagnosis.

I will be forever grateful to that wonderful woman. God bless nurses.

Now for treatment. Hopefully my pain will ease soon.