It’s that time again, I’m writing in response to A Chronic Voice’s monthly linkup

April prompts: distancing, returning, stressing, understating, celebrating

When I was diagnosed with Functional Neurological Disorder(FND) in 2003, I was told by the neurologist who diagnosed me that I also needed to see a psychiatrist to confirm my diagnosis, since it was considered a psychiatric condition.

This is no longer the case, and that labeling transition has been occuring for over 15 years.

The current understanding of FND is that it is a neurological condition that is sometimes triggered by trauma.

Distancing neurological and psychological features of FND

FND is, first and foremost, a neurological condition.

 The symptoms look like neurological symptoms(each FNder will have a different symptom set, which can include: seizures, myoclonic jerks, limb paralysis, bladder or bowel dysfunction, gait disruption, cognitive issues, sensory symptoms and more), but don’t have the usual causes or test results.

My symptoms have primarily been movement symptoms(myoclonic jerks, dystonia-like symptoms, and shaking or rocking style movements), but I also have been managing urinary dysfunction and sensory symptoms.

My understanding is that most folks with FND have multiple symptoms or sets of symptoms, which either do not have an additional cause or are much stronger than one would expect given their other diagnoses/conditions.

Many people with FND do have other conditions, but that’s not a prerequisite for the diagnosis. It is a very real condition, but one which tends to have inconsistent symptoms. That inconsistency has led to multiple people with FND being accused of malingering(faking it).

The older term for the condition, conversion disorder(which is still used today), defines it as a psychiatric condition, where the patient converts their stress into the physical symptoms.

For some people(including me) this psychiatric description is a reasonable fit. My symptoms often occur when I am under stress of any type and are often more severe when it is a stress that I don’t want to acknowledge or find especially threatening.

However, this is not a problem that psychiatrists and psychologists can solve alone, and in many cases, there doesn’t seem to be a connection between an FNDer’s symptoms and stress.

Returning the responsibility to neurologists

So Functional Neurological Disorder was labeled as psychiatric when I was initially diagnosed, and many neurologists still believe it is.

For this reason, many people diagnosed with FND by neurologists are immediately instructed to see a psychologist or psychiatrist rather than getting support from the neurologist.

The modern understanding by FND-aware neurologists, though, is that neurologists should actually be right in the center of patient care management.

FND patients improve most when seen by knowledgeable physical, occupational, speech, and/or talk therapists.

That combination of appropriate therapists(depending on symptoms) can help us, as patients, to regain control over our bodies, and better manage our symptoms.

Neurologists can write appropriate prescriptions to guide the treatment, and potentially recommend appropriate therapists – or partner with therapy programs at their own hospital to develop an appropriate treatment program.

Unfortunately, too many neurologists haven’t kept up with the research, and simply reference their med school notes or concepts that define FND as psychiatric, and dismiss their patient out of hand.

model of a brain and a neuron
FND is a neurological condition, and should be managed by neurologists. Psychologists can help FND patients, but FND treatment requires a multidisciplanary approach.

I have heard from many fellow FNDers that after an initial neurologist appointment they receive no guidance beyond ‘you should see a psychiatrist or psychologist’, with no follow-up and no further instructions or support.

That isn’t what should happen.

FND often includes shifts in symptoms, which can be very stressful when they occur. Most symptoms appear to be neurological symptoms, but each major change requires confirmation that it doesn’t align with a different disorder.

With regular neurologist visits, each major symptom shift can be discussed by patient and doctor, and the neurologist can suggest appropriate testing to rule out other possibilities, which can help the patient better manage stress – and catch any new condition that may arise at an early stage.

Too many people with FND have every complaint dismissed as ‘obviously an FND symptom’ without the appropriate confirmatory testing.

There are important lines to be drawn here, and too many doctors are dismissive of the complaints by people with FND, in a similar way to how many patients with mental illnesses have their medical complaints ignored or dismissed due to their physicians’ bias.

People with FND don’t die from FND, it’s not a progressive condition.

People with FND can and do die from missed diagnoses due to new symptoms being dismissed when they actually are warning signs of other conditions.

Stressing the significance of stress and trauma

The best we can tell, FND, like many conditions, is stress-responsive or stress-reactive, meaning the more stress(including eustress) a person is exposed to, the more likely they are to have symptoms or the more strongly their symptoms seem to express.

While some FNDers can identify a triggering stress or trauma(like breaking a leg, getting a severe viral infection, or an emotionally stressful time in their life), other people with FND believe their symptoms came out of the blue with no recognizable cause.

The conversion disorder theory leaves no space for this sort of distinction, but there are patients who have the same sort of symptom set, nothing to suggest other conditions, and share that diagnosis.

Stress management and identification of stresses and triggers seems to be the most effective add-on to the necessary focused interdisciplinary treatment programs recommended.

Some of these programs include psychological support in these treatments and others don’t, but either way, people with FND benefit from learning to better recognize and manage their stressors.

Antidepressants and antianxiety medications are the only medication that has reliably proven to help FNDers – even if they don’t report depression or anxiety. Adjusting to a disabling condition is stressful in and of itself, and it appears that the pathways blocked or managed by these medications help those who have FND as well.

Most self-help techniques I’ve learned or suggested with FND are associated on some level with stress and stress management.

My personal theory is that people with FND have a stress trigger that they may not be aware of, but there is no way to know for certain.

At this point, we all are sharing the diagnostic umbrella of FND.

Understating the mental health component

What has frustrated me lately is when people push back so hard against the psychiatric label that they refuse to acknowledge that there is the potential to be helped by psychologists.

I also have felt like, due to the stigma that is often attached to mental illness in general, some of these fellow FNDers are fighting the fears of mental illness being labeled as ‘imaginary’ or ‘non-existent’ as opposed to the reality that mental illness is also real – and can also often be seen through fMRI observations of brain function.

FND may not be a mental illness and must be treated as a neurological condition, but that doesn’t mean that mental illness should be bashed in the process, nor that FND isn’t helped by treatments that help improve mental health

FND appears to be a neurological condition that often has a strong trauma component, which sometimes is physical and other times is mental/emotional, and sometimes remains unidentified.

FND can be observed through fMRI comparative research and associated imaging and appears to be associated with increased size in portions of the brain that associate emotions and movement, and the damage appears to have occurred in the section of the brain that acknowledges or confirms control of actions.

I recognize that FND is right on the boundary between neurology and psychiatry, but understand that historically, being on that boundary has left FND ignored and dismissed by both specialties.

I understand the instinct that pushes back against the psych label, and the fears of dismissal that reinforce the need of many FNDers to push back and say ‘but this is real’.

I just want to be clear: mental illness is real too.

I suspect that this distinction has been pushed a little too hard by the community to comfort the FNDers who have been ignored, stigmatized, mocked, or ridiculed for their symptoms, and their lack of a useful diagnosis.

Also, there are people with FND who cannot or refuse to process the reality of mental illness. For them, embracing the FND diagnosis is easier if they focus on the neurological aspect.

I just worry that in all of this, there’s pushback against acknowledging the relationship between mind and brain – that sometimes the distinction is without difference, or the boundaries are much more arbitrarily set that folks are wiling to believe.

Most people, in general, can benefit from talking with a trained psychologist, and FNDers are no different.

Even holding onto FND as a neurological condition, it impacts our lives, our quality of life, our day-by-day activities, and so is traumatic and stressful in and of itself.

It’s something worth talking out with a trained professional.

Above and beyond the talking out the stress of change, for many of us, there are events, thoughts, or actions that trigger our FND symptoms.

Psychologists can help us to identify these triggers and better understand their significance and how to manage them.

Celebrating FND awareness

FND awareness is important!

I am grateful for FND Hope for pushing for FND awareness – both in the form of FND Awareness day(April 13) and this new monthlong celebration of FND awareness.

I am also grateful that I have found some amazing neurologists who have been incredibly helpful and supportive as I have managed my FND.

Having both an FND diagnosis and mental health diagnoses I feel it’s important to both acknowledge that FND is not a psychiatric condition and to acknowledge that mental illness is no less real than other disabling conditions.

FND does have a trauma component, which is sometimes best treated by a trained psychologist and possibly with common psychiatric medications.

I want to actively represent and support my community while supporting other associated communities. I’m proud to understand how my condition works and what to expect from it, but I do not want that understanding to stigmatize other conditions.

This month, I will be focusing my posts on FND, but hope that others without FND will find concepts useful for better managing their own conditions in them.

I hope that this post will help others better understand what FND is, how it works, and how it relates to other conditions.

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6 Comments

  1. I found your post really interesting. I fell ill a few days after a trauma (I took a dying relative to hospital and they died as soon as they arrived through the door) Then three days later I woke up with severe pins and needles and by the end of the day I couldn’t move at all. I was hospitalised for two weeks and had so many tests. An MRI showed lesions on my spine in two places and I was diagnosed with Transverse Myelitis and told I would be better in about 8 weeks. A year later, with no improvement, I was given more tests, NCS, EMG and blood tests and found that I had a rare anti-body, the anti glycine receptor. I was diagnosed with Stiff Person Syndrome plus PERM. I had steroid treatment (Again) and IVIG and this year I was told that the anti-glycine receptor was gone and there was nothing at all that could be causing my still continuing condition. (I have dystonia in my left side now too) In my notes my Neurologist has put that he will be considering my condition as Functional. I seem to have gone the backwards way to this kind of diagnosis, don’t you think? My neurologist has more or less told me he’s done everything he can. I no longer have IVIG as it didn’t work. I am unable to walk more than a few steps and in constant pain. I have a spastic gait, dystonia, mycolonus, full body spasms and TN.

    1. Anne,
      Wow, sounds like you’ve been through the wringer with this!

      Stress is a super common trigger for a lot of conditions, and it definitely sounds like you’ve been through plenty of trauma!

      If you are up to it, FND may be a useful diagnostic avenue to explore. There are treatment programs, which are most effective on movement symptoms (like myoclonus and gait dysfunction), but often reduce all or most FND symptoms. I developed new, comparatively minor, symptoms after my participation, but apparently that’s relatively rare. About 2/3 of patients who participate in these programs improve!

      Thanks so much for sharing your story, and I hope things improve for you!

    1. Thanks so much!

      I’m passionate about helping others understand FND because it’s what I have, and because so many people don’t get it.

      I feel fortunate that I have had quality neurologists through this, who have understood and been helpful. Nobody questioned the reality of my symptoms.

      However, I know I am an exception, rather than the rule, and so it’s important to speak out for those who haven’t been so fortunate.

  2. Hi Alison, I am so impressed by your extensive knowledge surrounding FND and how it works. It shows some great research! Well done on using this month to raise awareness about FND, as I know that there is still so much misinformation and stigma surrounding the diagnosis even amongst the medical field.

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