For both women, the symptoms arrived without warning and apparently without reason.
Ronda Palazzari of Thornton first noticed a bladder issue that seemed to be an infection but wasn’t. Then came the headaches and the tremors. Exercising one day, she couldn’t lift her right foot. Tinglings like electric shocks ran down her legs. Severe pain behind her right ear tormented her. On Christmas Day 2016, Palazzari was unable to get out of bed because her legs were paralyzed.
Khamryn Snow of Boulder felt unexplained pain and tremor invade both her arms and legs. Numbness and pain that shot through the legs left her unable to drive. The left side of her body became hypersensitive, making a fall or contact agonizingly painful.
Both felt their brains betray them. Their thinking clouded. They searched for words that once had been easy to retrieve. Their frustration and aggravation grew.
“I had a memory that was sharp as a tack,” Palazzari, 50, said. “But I suddenly couldn’t locate a word in my head.”
“You keep reaching out to find a word and you just can’t,” said Snow, 37. “I had trouble articulating what was going on.”
The problems took a toll. Palazzari had to stop working in January 2020, while the physical toll forced Snow out of regular employment in 2009.
A hard diagnosis to find
But their burden was even heavier. For years, no one could tell Palazzari or Snow what caused all the torment. Some providers dismissed it or offered glib explanations. “Sounds like you need more sleep,” one neurologist told Palazzari after she submitted to an MRI, blood work and a review of her medical records. Some of their providers were sympathetic but puzzled because they could find no definitive source for the pain.
Functional Neurological Disorder: the junction of two worlds
But there was a cause – one that straddles the realms of neurology and psychiatry called functional neurological disorder (FND). It’s frequently misunderstood but surprisingly prevalent, said Dr. Samantha Holden, assistant professor of Neurology at the University of Colorado School of Medicine. Holden practices at the UCHealth Neurology Clinic – Central Park, specializing in movement and cognition disorders.
In functional neurological disorder, patients experience physical and cognitive problems because of disruptions to the signals that the brain sends the body, Holden explained. A symptom like the shooting pain Palazzari and Snow experienced might mimic the discomfort caused by a pinched nerve. But an imaging test would show no nerve damage. As Holden and others explain, the source of their pain is not the body’s physical nerves or organs – in computer terms, their hardware. Rather, the problem is in the software – the messages from the brain and the way the body interprets them.
Holden said FND is the second-most prevalent neurological diagnosis, behind only headache, but until relatively recently it was too often “brushed aside as something not real, in your mind, not your brain.” As a result, many people with FND make repeated trips to the hospital or emergency room, only to be tested and told nothing is wrong, Holden added.
“Patients are often put in a position of having to prove they are not faking,” she said. That sets up “adversarial mistrust” on both sides.
“Doctors can get frustrated when they can’t find something with a test,” said Dr. Laura Strom, associate professor of Neurology at CU. Strom practices at the UCHealth Neurosciences Center – Anschutz Medical Campus and is medical director of the multidisciplinary FND Clinic, which includes a psychiatrist, a licensed clinical social worker, a nurse practitioner physician assistants and staff. Strom is a fellowship-trained epileptologist who specializes in treating non-epileptic seizures (NESs) – one of many forms FND takes.
Mental health – symptoms are real
The solution to the frustration of both patients and providers, Strom said, is to recognize that functional neurological disorder is a genuine condition that affects both the mind and the body and requires the expertise of both neurologists and psychiatrists. Sigmund Freud, the founder of modern psychoanalysis, she noted, was a neurologist who realized that many of the functional problems his patients experienced couldn’t be measured with a reflex hammer because they originated in the brain, spurred by unconscious memories of past pain.
In Freud’s conception, these patients “converted” their mental struggles to physical issues, giving rise to the term “conversion disorder,” which the Diagnostic and Statistical Manual (DSM) used until relatively recently adding the term “functional neurological symptom disorder.” The key point, Strom said, is that in patients with FND, the physical and the mental – body and brain—are often tightly intertwined.
“The overriding concept in FND is that these are real patients with real problems, and it is highly associated with trauma,” Strom said.
Testing for the root causes
Both Strom and Holden test patients extensively to identify neurological problems like epilepsy, Parkinson’s disease, multiple sclerosis and a host of other conditions that functional neurological disorder can mimic. But both emphasized the importance of helping patients understand that FND is a positive diagnosis – a confirmation that what they experience is real.
“I tell patients I know a lot about the brain, but they know a lot about their brain,” Holden said. “I need them to meet me in the middle and say, ‘Yes, that fits,’ or ‘No, that doesn’t, based on my experience.’ It really is a partnership in building back up trust that has been destroyed.”
Holden said she spends at least 90 minutes with patients in an initial examination to identify and categorize their symptoms and identify triggers for them, like stress, and other conditions that might worsen them. Khamryn Snow, for example, also has multiple sclerosis, the symptoms of which overlap with her FND. Holden helped to arrange an MRI for Snow that produced the MS diagnosis.
Tests and input from patients help Holden suggest approaches to mitigate symptoms. Cognitive behavioral therapy, for example, helps relieve depression, anxiety and trauma that disrupts the brain’s circuitry with unpredictable results. Physical therapists assist in managing movement problems and reducing physical pain.
In addition the CU Departments of Neurology and Psychiatry collaborate in a multidisciplinary group therapy clinic for patients diagnosed with NESs. Strom said the clinic is a “treatment arm” that she believes will be adequate to eventually treatment patients with “all manifestations” of FND, including those with movement, gait, sensory and vision disorders, and any other neurological symptom without a clear source.
The key: listening to patients
But as Holden emphasized, treatment for functional neurological disorder begins with patients recounting their experiences and specialists taking seriously what their patients recount about their struggles.
“The number-one thing I do is listen and validate what they tell me,” she said.
Both Ronda Palazzari and Khamryn Snow credit Holden for relieving the frustration that mounted as they battled their mysterious symptoms.
Palazzari recalls that her family physician sent her to a neurologist for help with crushing pain behind her right ear, as well as her tremors. The neurologist ordered an MRI, concluded that the pain came from her trigeminal or occipital nerves and prescribed the drug gabapentin to treat it. She said he dismissed her questions about tremors as something people get all the time.
The head pain didn’t go away, even as Palazzari increased the gabapentin to the maximum dose. “My head pain was a 10,” she recalled. “I could hardly get out of bed.”
She struggled, meanwhile, to raise her teenage kids and maintain full-time work as director of operations for a church. The burden increased when she began experiencing feeling sensations of electric shocks coursing through her legs and pins and needles in her hands.
On her own, Palazzari sought out an acupuncturist who helped decrease her pain and her dosage of gabapentin. But still the problems persisted, and when a second neurologist dismissed her issues with the directive to get more sleep, she quickly moved on, telling her family she wanted to go to UCHealth to find an answer for her very real torment.
The role of stress and trauma
After enduring the mysterious three-day Christmas Day paralysis, Palazzari saw Holden in May 2017. She described the meeting as “Life changing.” With the quip, “You’re not crazy, but it is all in your head,” Holden told Palazzari she had functional neurological disorder, gave her information about it, and let her know that much work lay ahead to help her “reset the brain.”
Part of that work involved dealing with mental, physical and sexual abuse that Palazzari said she experienced as a child. Holden recommended CBT as a way to address the stress and trauma of the abuse and their possible connection to her FND. Palazzari also received physical therapy from Christine Cedilotte at UCHealth Physical Therapy and Rehabilitation Clinic – Central Park and Marcus Kurek at UCHealth Boulder Health Center. Kurek specializes in treatment of patients who have endured trauma.
Meanwhile, Holden encouraged Palazzari to continue to manage her FND symptoms with acupuncture, massage therapy, restorative yoga and meditation.
Snow also identifies stress as a contributor to her FND. It’s the result, she said, of middle and high school bullying in Boulder that led to an anxiety disorder that she recognizes as a trigger for her FND. She describes “brain fog” that creates a “cyclical situation” of clouded thinking that increases her anxiety and further envelops her brain.
During the anxiety attacks, Snow said, she feels “lost in an abyss, adrift, not sure what to do with the rest of [my] life. You have hopes and dreams but getting from point A to point B is difficult.”
Snow found Holden through FND Hope, an organization that raises awareness of the condition through a variety of channels, including a Facebook support group. Snow said Holden helped her simply by listening to her and believing her.
“She makes sure I know I’m not crazy,” Snow said. “That is so important. I don’t know where I would be without her.”
Many management techniques for Functional Neurological Disorder
Holden helped Snow get treatment for her anxiety disorder, referred her to a sleep neurologist, and assisted in getting the MRI that produced the MS diagnosis. Snow also gets physical therapy in the form of stretching and light exercise, which is important for both her FND and MS.
Like Palazzari, Snow has also discovered other techniques that help manage her symptoms, including reading, video games, group chats with a small circle of friends and “world building” – that is, creating her own fantasy realms. She creates her own one-of-a-kind jewelry pieces, takes weekly classes at the Boulder School of Metals and hopes to start her own business. Cutting metal, soldering, drawing and coming up with new ideas, she said, helps her to focus on something other than the problems FND spurs.
Art has also helped Palazzari, who is a multi-media specialist with her own line of stencils and other products. After an FND-forced hiatus, she’s revived her business and made it part of her path to recovery, along with exercise, diet and strict attention to her physical and emotional limitations as part of her path to recovery.
The two women are realistic about the state of their health. Snow calls her FND “pretty stable and fairly under control.” She acknowledges that she hasn’t undone the damage of the past, “but I’m not doing more.”
Recognizing the reality of Functional Neurological Disorder
Palazzari said she’s learned that to manage her FND symptoms, she must reduce her stress. She said she has come a long way from the physical and mental depths into which she’d plunged before seeing Holden, but knows she must continue to manage her symptoms.
“In order to be the best I can be in this body I have now, I have to maintain positivity and keep going,” she said.
Both have firm words for those who may not understand FND and for those fighting it.
“Don’t assume. Functional neurological disorder is such an invisible disease that every day feels like a challenge,” Palazzi said. “Just because we ‘look great’ on the outside doesn’t mean there isn’t a battle going on in our bodies. We are just used to dealing with it on a daily basis.”
“It’s not made up. It’s real,” Snow added. “You’re experiencing it and should take it seriously because there are things you can do to help and there are people who can help.”