April is FND Awareness Month, and April 13 is FND Awareness Day.
I’m going all in on that, and I’ll be focusing this post and month on the process of accepting your diagnosis—and illustrating it with my FND experiences (and what I’ve picked up from fellow FNDers inside of discussion groups).
I’m also using A Chronic Voice’s prompts in this post. This month’s words are: springing, grounding, luxuriating, daunting, sustaining.
As has been my habit lately, I’ll be doing a talk this month as well, focused on that acceptance process.
I’ll be illustrating it with my own experiences with FND and helping you understand this condition a bit more in the process.
The talk itself will be on April 13, FND Awareness Day. Please register here if interested!
Springing into action—literally!
As I’m writing this post, I’ve been taking the occasional “twitch break.” Today, for whatever reason, I’m a bit extra symptomatic, so as I’ve been typing things out, I’ve also been having episodes of head shaking and rocking back and forth.
My FND symptoms have always tended to express as sudden, severe body motions—some of which don’t look natural at all, others of which look an awful lot like a person being fidgety or annoying.
I don’t know why the movement symptoms are my primary FND symptom set, but I definitely know that they are. When I’m excited, upset, sick, or under any other form of stress, my body springs into action.
Some of the more common forms of this are my wrist bending and flexing quickly and repeatedly, with my fingers along for the ride, my head quickly shaking back and forth as if I’m signalling “no,” my torso rocking forward and backward, sometimes violently slamming into whatever’s behind me (or forward so hard I slam my chest into my legs), and my feet stamping on the ground as if I’m a toddler having a temper tantrum.
Over the years, I’ve had some especially weird and/or debilitating ones, such as “the velociraptor,” which would occur while was walking.
Whatever leg wasn’t touching the ground at the moment would lift up with my knee bent, while both of my arms would suddenly lift up, elbows bent so my hands were against my shoulders, with my fingers pointing downward like claws. All three limbs would do this simultaneously, making me look (I felt) like a small dinosaur ready to jump its prey.
Sometimes this would just happen once; other times it would keep reoccurring every few steps. Often, I’d know it was happening a few seconds before it did, but I was powerless to prevent it.
My movement symptoms have always tended to be abrupt and somewhat violent.
Initially, I was overly nonchalant over them (subconsciously, I knew it wasn’t dangerous), but it was a very frustrating thing, and as time went by, I became more and more frustrated by my symptoms.
Feeling frustrated and angry when I had symptoms meant that I was sending more stress-associated signals to my body, and so I’d often have a chain reaction of sorts, where I’d have a movement symptom and then my own frustration and anger about becoming symptomatic would trigger more symptoms.
This is honestly one of the big challenges a lot of people with FND face. When they have symptoms, the symptoms upset them, which increases the stress, which increases the chance of having more symptoms.
A big part of my healing and acceptance process has been to recognize my movement symptoms as a bodily expression of stress, and to focus my energy into soothing and calming myself down, instead of frustration that my symptoms are occurring.
By de-escalating that process, I’m more likely to regain control of my body more quickly and I’m less likely to have as severe symptoms.
Why grounding myself is the answer
So I’ve shared a bit about a weird symptom, but what’s the underlying story of why it works?
Functional Neurological Disorder (FND) is a neurological condition that’s triggered by some form of trauma/stress.
What actually happens to people with this condition is that our brain’s wiring shifts so that when certain triggering stresses occur, wires get crossed and a signal gets sent out without the part of the brain that acknowledges control over actions being clued in.
This makes it feel like our (FNDers’) bodies are doing things despite our not telling them to do so.
FND symptoms can mimic pretty much any neurological problem out there, so while my symptoms are primarily muscle movements, other people with FND primarily may have completely different symptoms, like non-epileptic seizures, body weakness, limb paralysis, and lots more.
Unlike many conditions, what connects FND patients isn’t precisely our symptoms themselves, it’s an entire possible constellation of symptoms that don’t have the mechanical causes that other conditions do.
It’s seizures without epilepsy or other known causes. It’s paralysis despite not having a discernible reason. It’s muscle movements that don’t fit any of the known movement disorder types.
Also, FND symptoms tend to be distractable.
This means that FND symptoms are often inconsistent in both severity and type and that many FND symptoms will decrease or vanish if the patient is calmer, distracted, or focusing on something else.
Unfortunately, too many people interpret this trait at proof that the person is faking (malingering) or that they aren’t as bad as they are saying.
The fact of the matter is that this distractibility is a common feature for most people with FND—it’s part of how the condition works.
Most treatment programs and doctors have a bit of an obsession with an FND patient “accepting” their diagnosis, which isn’t mentioned as often with many other conditions.
The reason is partially due to the psychiatric roots of the understanding of the condition. The fact is that FND is right on the boundary between the studies of neurology and psychiatry, and, like most conditions, accepting the diagnosis increases the likelihood of patient follow-through on their treatment process (among other things).
Treatment for FND is mostly based on the combination of mindfulness/relaxation practices and therapies, learning to recognize and manage triggers, and pausing to regain control over the body.
Accepting that the problem is a signaling problem in the brain, rather than a physical/structural problem that somebody else can adjust, is vital for the treatment to work.
I’ve put a good amount of mental and emotional energy into meditation, mindfulness practices (especially Mindfulness-Based Stress Reduction), understanding my triggers, and finding distractions that work for me.
So much of managing FND is really about learning to quiet the mind, ground yourself, and then try again without the pressure.
Learning different healthy ways to ground myself has been such a vital tool for my healing with FND, and my understanding is that it’s also very helpful for many other conditions.
Most treatments for FND, in fact, are ones that helped many other conditions first, and then somebody involved decided to try it on FND patients.
Luxuriating is a key to healing
Managing my FND symptoms takes a lot of hard work.
However, much of that work is things that too many other people might see as luxuries that anybody would enjoy.
For example, one of the ways that I often have managed the damage my FND symptoms can do to my body is through getting a professional massage.
This tends to conjure up images of day spas, wealth, and idle relaxation, while the reality is that seeing a massage therapist is one of the few ways to reduce the muscle strain, retrain my muscles to relax, and reduce the likelihood of pulled or strained muscles when I have a severe symptom set.
With Covid-19, I’ve had to forgo that particular luxury, but that’s one of the things that I’m hoping I can return to once I’ve been vaccinated.
The massage therapist I’ve been seeing practices from her home, and because Al is in danger of exposure (working in close proximity to five others, not all of whom are great about wearing masks), I haven’t wanted to risk the health of her or her new baby.
I’m also aware that meditation can sometimes seem esoteric or new agey, though it’s definitely been becoming more mainstream.
While some of my treatments are thought of as luxuries, they substantially improve my quality of life.
The daunting task of finding a doctor who accepts my diagnosis
Unfortunately, my own acceptance of my FND diagnosis isn’t the only challenge.
I know that I’ve been extremely fortunate in finding two different neurologists who specialized in FND in the 20 years I’ve had the condition.
Dr. Mazzoni diagnosed me in 2003, and I continued seeing him for about 11 years. He understood FND and was very supportive, helping me through the challenges—though there wasn’t much research to guide us.
When he moved away, he recommended that I see Dr. Schneider, who was also an expert in FND—he’d actually been a resident at the Center that Dr. Mazzoni worked at.
Dr. Schneider was amazing, and also extremely helpful. He had patients coming in from multiple states to see him—it’s really challenging to find an FND expert.
Now that he’s passed away, many of his patients are left facing the task of trying to replace the irreplaceable.
For me, I’m practiced and experienced enough with FND that I’m settling for a fellow practitioner of his who absolutely accepts the reality of FND, despite his lack of prior experience with it.
I mainly need somebody to help me rule out other possibilities when my symptoms shift, which he feels comfortable doing.
I’ve heard a lot of horror stories from fellow FNDers.
Their doctor just told them to see a psychiatrist—or their doctor didn’t believe that FND was a real condition.
Personally, I’ve seen one or two doctors who didn’t take my FND diagnosis seriously—including the doctor who misdiagnosed me as having interstitial cystitis.
For too many people with FND, they are facing disbelief from all angles.
I know that I had to see three different neurologists before I was referred to Dr. Mazzoni. None of them had any idea what was actually wrong with me.
Fortunately, FND Hope is aware of this issue and has actually put together a database of FND-aware practitioners.
I recognize how extremely fortunate I am to have been referred to Dr. Mazzoni.
Having a doctor who accepts the reality of my condition and helps me manage my diagnosis and symptoms really helped me to understand and accept my condition.
From research done by other FND health professionals, many doctors are especially anxious about explaining FND to their patients, so this is a really prevalent issue.
Sustaining my health through acceptance
While my FND symptoms started over 20 years ago, and my diagnosis was made 17 years ago, part of accepting my FND is the awareness that every new symptom that I experience may be FND or it may be something else.
Because FND has such a huge variety of symptoms, there are many things that could potentially be written off as an FND symptom, when it’s actually a warning of an additional condition.
Just because you have FND doesn’t mean that you can’t also have or develop some other condition.
In my case, I was officially diagnosed with depression as a child, and developed more anxiety traits over the years. My FND symptoms started during college, and I was diagnosed a few years later.
Since then, most of the new, strange things that happened with my body were indeed FND-associated.
The main exception so far has been my migraines, which I had on occasion starting when I was younger, but have become a constant experience the past couple of years.
Other than that, every few years, I develop a new symptom that I’m not 100% sure is FND.
Part of my left leg (outside calf area) has been numb for most of the past 4 1/2 years. Usually, I’m just slightly aware of an emptiness where the sensation should be, but it also sometimes flares into pain.
It’s an FND symptom, but to make certain of it, Dr. Schnieder and I agreed that I should have a nerve conduction test to double-check for damage there.
I also had a point where my eyes darted around in my head, as if I was looking around in a panic.
It too was an FND symptom, but I also checked in with my ophthalmologist and had him examine me to rule out any other possibilities.
Whenever an extremely different symptom occurs, something that isn’t obviously an offshoot of previous FND symptoms, I double-check it.
I don’t want to miss some other condition because I dismissed early symptoms as FND.
Another part of accepting my diagnosis is acknowledging that while I certainly can improve my quality of life, I’m unlikely to be symptom-free in the long term.
I’ve learned to be okay with that, which removes the stress of feeling like I should be “over it” by now.
For me, accepting that I have FND means that I’m constantly checking in with myself about what I’m feeling and why, while staying as calm and relaxed about my life as possible.
It is a balancing act. When new symptoms happen, I don’t dismiss them as unimportant, but I also don’t panic.
I assume it’s most likely an FND symptom, but I schedule an appointment with the appropriate doctor to check over the other possibilities.
When I get symptomatic, I don’t panic about it. I accept it and try to recognize the message my body is sending me.
Sometimes it’s obvious—I just saw a trigger, or I have a cold, or I’m pushing a limit.
Other times, it’s more subtle, like I’m experiencing an emotional echo of a trauma or I’m coming down with a bug, or I’m just a little short on sleep.
There are occasions where I simply can’t identify a trigger at all.
But I always try to listen to my body and subconscious and experience. I stay open to the possibility of a deeper message of self-understanding.
I put energy into developing and maintaining good eating habits, good exercise habits, meditation, mindfulness, and self-care.
Whenever I relapse, I cut down to the essentials, and know that I’ll weather this storm too.
As I recover from bad days, weeks, or months, I slowly rebuild the habits I lost and be as kind to myself as possible.
Through that self-awareness, self-compassion, and habit-building, I keep myself in a generally upward trend, despite the many setbacks, big and small, that my condition may bring out.
My talk on April 13 will focus on breaking down discrete stages of the acceptance process, creating a path toward full acceptance, and integration of your condition into your life.
Thank you so much for using this month’s writing prompts to share more about your experience with FND, and also how you came to accept this rare condition. Your knowledge gleaned is invaluable.
Thanks so much Sheryl! The amazing thing is that it isn’t really rare – it’s just misdiagnosed or goes undiagnosed too often!
You know you’ve done a great job of advocating when your friends are aware it’s FND Awareness Month. I noticed it was coming up last month and thought of you. I’m so glad you’re going to be educating us further and letting us into your world a bit more.
Acceptance is huge. It took me such a long time to accept that I had AS. When fibro and MECFS came along, I did not believe it. I refused to accept that and made the worst mistake of pushing through things when I should’ve been letting my body rest. I think these are things that take time with all patients. We have to learn it. Great post and I love what you did with the writing prompts this month. Take good care and good luck with your talk on April 13th!
I always want to help folks understand FND- especially because it often magnifies the effects of other conditions.
Acceptance is huge and often a major challenge, which is why I figured it was the perfect topic for this month.
Most people have trouble accepting their conditions at some point, or at least the full impact of them. For FND patients, ‘acceptance of diagnosis’ is actually a prerequisite for some of the treatment programs! It reinforces the psychological model, but in some ways is a necessary prerequisite because so much of treatment is about mindset and mindfulness.
If a person insists that there’s something entirely physical wrong, they may not accept this treatment process.
FND being right on that boundary(between neurology and psychatriatry) in(I think) an especially unusual way, really does make acceptance a prerequisite to effective treatment.
Thanks for your well-wishes, I’m really looking forward to giving this talk!
I love how you’ve rolled a few things into one so beautifully here, raising awareness and sharing your own experiences and tackling the A Chronic Voice Prompts at the same time!
You’ve described some of what it’s like with FND so well. I feel bad laughing at the small dinosaur part but you visualised it well 😂
I’m just so sorry you have to live with this and the huge impact is has on your life. I’m glad you talk about the anger and frustration because I’ve found those to be quite big elements to my journey, too. Healing and acceptance aren’t easy.
I hope you can get back to massages again safely in the not-too-distance future.
Thank you so much for your kind words!
Don’t feel bad about laughing at my ‘velociraptor’ move – I am all about finding the humor in the moment, and that particular symptom set is so weird, it deserves a giggle 🙂
Healing and acceptance aren’t easy, which is why I am doing the talk on Tuesday!
I am hoping I can return to getting massages again soon too…first step is getting vaccinated for covid-19, which I am hoping will happen soon!
Thanks so much for reading!