After some thought, I decided that the most appropriate way to end FND Awareness month was to talk about my early experience with FND – from when my symptoms started to when I actually recieved my FND diagnosis. This is a journey that took a bit over 3 years, so that you have a sense of scale. In the grand scheme of things, that’s probably a shorter time period than most people, especially since I had multiple remissions and over a year of that time was spent symptom-free.
Mental illness was the root of the problem in my case
I’m one of those people with a long history of mental illness. I was diagnosed with clinical depression at the age of 9(triggered by a series of deaths and losses), and treated for it. I’ve been seeing psychologists in some form or other since then, with brief periods in which I don’t seek professional help.
However, my FND symptoms weren’t initially because of my own mental illness, but instead that of the person I was dating.
When we met and got to know one another during our sophomore year of college, he seemed like a great partner – a fellow geek, whose sense of humor I enjoyed. We were happy together, and held a lot of hope for a happy future.
When we returned to school in the fall, though, he was different, darker. He spoke of suicidal ideations, raged against the school’s suggestion that he take a year off(unbeknownst to me, his grades had been poor), and was suddenly angry at me for the smallest act that he took as a provocation by me.
Every week of that fall term became more and more stressful and frightening. While the first few weeks felt okay, with just a bit of worry about keeping up his grades, things slowly got darker and more anxiety-producing.
I was more worried about his safety than mine, but there was a part of me that was, very simply, frightened.
During this period, we’d spend a fair amount of time cuddling together to comfort one another. While we were lying there, in what should be safety and security, I would start to shake and tremble. It was a shiver, but exaggerated. I wasn’t cold, but something in me was protesting these moments of emotional intimacy, fearful that they weren’t what they seemed.
When I’d shiver, he’d hold me tighter. When he held me tighter, I shivered more. I couldn’t explain it to him. I didn’t understand it myself.
I just knew that this was happening and it was strange. On the rare occasions it was mentioned, we’d call them my shivers, but nothing was done.
What was there to do?
Things get worse
By the end of the semester, tensions between us were severe. We were fighting at least weekly, and each fight got harder to reconcile. I never knew what was going to happen next, and the whole thing was just this pile of tension and stress.
On the Monday of finals week, he broke up with me and declared the relationship over.
I was hurt, angry, and emotional. Those strange shivers occurred, and I felt betrayed – both by him and by my body.
I distinctly remember walking into one of my finals(on English Literature, not my standard science courses) and bursting into tears when I saw the first section. I was supposed to break down these bitter poems about lost love and I just couldn’t deal in that moment.
That week, I was in bad shape. I lost my appetite and so at each meal checked in with my friends to make sure I was eating enough.
After the holidays, when I returned to campus, he told me he wanted to get back together. I said no, because things had been rocky before he dumped me and I didn’t want to go back to that uncertainty.
The rest of the school year was emotionally traumatic.
I tried to escape his orbit much of the time, and sometimes I got drawn back in either through his actions or mine.
We got back together once or twice, but were detached again within a week or two.
I reached a point where I couldn’t feel comfortable unless I knew that he didn’t know where I was.
I slept in friends’ dorm rooms, changed my habits, and spent time at every meeting we were both part of being equally afraid of him being there(because something bad was bound to happen) and him not being there(because obviously, the only possibility was that he was following through on his threats to kill himself).
It was an emotional nightmare.
Every time I thought that maybe I would be okay, when I started to relax a little, he’d reappear and send me back into these cycles. My anxiety was through the roof and I simply couldn’t find a space where I felt I could relax.
Those little shivers turned into large, full-body spasms. My friends and I referred to them as “twitches” and discovered that if a friend said “twitch” at me, my body would spasm.
Finally getting medical support
Eventually, friends prevailed on me to talk to my RLA(Resident Life Advisor), the adult(usually only a year or two older) who shared our dorm space. She agreed that I should see a medical professional and helped me get an appointment with a neurologist at a local hospital.
The neurologist gave me a full exam, and after some discussion, diagnosed it as “stress” and prescribed some clonazepam to help manage the muscle jerks.
She didn’t seem to disbelieve me(it was hard to because those muscle spasms were different enough from typical body movement that it was hard to think I was doing it consciously).
Still, she didn’t really seem to think that it was the sign of anything majorly wrong in my body.
Things did calm down a bit after that, and by the time the semester ended, I was mostly symptom-free. I didn’t want to think about that time and didn’t want to add to my stress while I was home, so I resisted seeing anybody.
Life in remission(Finishing college and having an international adventure)
After I realized how emotionally scarring my interactions with my ex were, I set myself up with two separate off-campus experiences for the next year.
When I got home for the summer, I knew that I would not be returning to my college campus until my final term(the university I attended had three 10-week terms instead of the more standard two semesters).
In the fall, I went to Woods Hole, Massachusetts for an amazing semester of ecological studies at the Marine Biological Laboratory. While I got a little twitchy at the midterms and final, I otherwise was symptom-free.
For the winter term, I flew to London, and spent 11 glorious weeks covering my fine arts requirement by watching(and analyzing) theatrical performances and learning a bit about both scientific and music history.
I had a wonderful time, and definitely caught the travel bug. I spent my break wandering around in Ireland, which was also amazing, and returned to campus for my final semester feeling hopeful and refreshed.
I did see my ex after my return to campus, but I was mostly able to avoid him. When I did see him, I got a nasty feeling in the pit of my stomach and felt uncomfortable, but I was symptom-free.
That semester, I completed my mapping work, studied philosophy, and fell in love with a woman. I was as surprised as anybody else, but quickly and relatively comfortably embraced my bi identity and celebrated this new aspect of my life.
After graduation, I returned to New Jersey, having set myself up with a job in fishery biology a few hours south of where I grew up.
I worked there for several months, but eventually left for other work opportunities and saved up for my big goal which was to backpack in Australia for a few months.
When I did finally turn towards home, I scheduled a long pit stop in the UK to visit friends I’d made on my prior visit and a friend I’d met in Australia.
While I was there, my symptoms returned briefly, as I interviewed for graduate school and started to think about my future.
However, graduate school ideas failed to pan out, and I applied to a few jobs I thought might be interesting.
Within a few weeks of returning home from my international adventure, I got offered a position as a “fishery observer biologist”, living onboard shrimp boats for days to a month or so at a time, doing species identification and other scientific measurements of the catch they brought in.
Living on a fishing boat is relatively dangerous, and everybody around me worried about my safety, and how far away I would be from land, friends, and family, and there were concerns about how I might be treated as (presumably) the only woman on the boat, while everyone was out to sea for weeks at a time.
I thought it sounded like a grand adventure!
After multiple conversations with the folks who ran the program, I decided that this would definitely be my next step. My parents weren’t thrilled but accepted that this was what I would be doing, and hoped for the best.
I loved that job. I was on the water, watching the sunrise and the pelicans fly, and every day I got to look at the bounty of the ocean.
It took me a bit to get my sea legs and the first day or two on the boat included bouts of seasickness. The amazing creatures that I got to see mostly died on board the boat, and the diesel fumes from the boat turned my stomach.
We worked from sundown to sunup, and ate dinner after we put the net out, and breakfast after we brought in the second tow of the day. It was a very different schedule.
I loved every minute of it.
When it all came crashing down
My second trip out to sea was also my last.
After I came back ashore, I rode with another observer back to Galveston to check in with the folks who ran the program. That was when I learned the devastating news. The program had lost funding, and they didn’t know if they would be able to continue sending us out.
I was reassured that they were doing what they could to save the program, but that they very simply didn’t know what would happen, or how long things might be out of commission.
January came and went with no work opportunities. I very simply didn’t know what to do.
I didn’t think to apply for unemployment, since I wasn’t exactly fired, and I kept expecting and hoping that any minute now, I’d get a call and there’d be a boat waiting for me.
My twitches came back a little, but I mostly ignored them because they were mild and because I assumed that it was “just stress” and it would go away soon.
I noticed that I was going to the bathroom more often than normal, and kept feeling like I needed to pee.
Eventually, I went to the doctor, who told me I probably had a UTI and put me on antibiotics.
By February, that urgency was worse, and I called my doctor back and was put on another round of antibiotics. By the time I completed that treatment, I was going to the bathroom even more often, and almost constantly felt like I needed to pee.
I was referred to a urologist.
The urologist’s office had to catheterize me when I came in, because I had reached a point where I constantly felt like I needed to pee, but was having a very hard time producing any urine.
Since they couldn’t find a cause or trigger for the urinary issue, they decided that the UTI I had must have triggered this chain of events, and they thought that maybe if I gave my bladder a break for a few days, that might get things working properly.
So in March, I spent about a week catheterized, with a pee bag attached to my leg.
That was when the call finally came from the observer job: there was a boat waiting for me, if I was willing to head out in a couple of days. The catheter was scheduled to be removed the day after they wanted me on my way.
I very sadly told them I couldn’t go. I didn’t know what was happening with my bladder, but I couldn’t imagine working with that constant urinary urgency.
That was the last communication I had with the program. The dream was dead, and I had to figure out something else.
The catheterization changed nothing, and my urgency was just as bad after it was removed.
They then had me try overactive bladder medications, and that was one of my worst experiences. The feeling of needing to go never ended, but I was physically unable to pee for what felt like hours after I took it.
The urgency was so strong it distracted me from everything else, but I still couldn’t pee.
I saw the neurologist again about the movements, and mentioned the bladder problems. He suggested that I get an MRI of my spine to make sure there wasn’t damage there. I scheduled an appointment in May.
Despite everything, I applied for work, and eventually was offered a job with the state’s endangered and non-game species program, where I was going to help out with a few field projects in south jersey.
It was a long commute, and I hit every bathroom on the parkway between home and there, but I managed to work anyway.
I was there for a month or so, but struggling to handle the urinary urgency and the long commute. I got offered a new job at a much closer facility that paid better and was for a longer time period, and I took it.
The day I went to negotiate when I left and let them know I had this other offer, I also got a phone call from a friend that she’d just had her first child, and then had already planned an elaborate birthday celebration for another friend the next day.
All of that stress and excitement was apparently the final push, as near the end of the party my whole body started trembling, and I couldn’t stop.
The next morning I was still shaking uncontrollably, and when it hadn’t stopped by afternoon, my boyfriend took me to my parent’s house.
On Monday, we called the neurologist who I’d originally seen two years earlier, and he suggested that if I hadn’t stopped shaking by Tuesday, I should go to the hospital he worked at and get admitted.
My MRI had been scheduled for the next week, but with the shaking, he felt I needed to be anesthetized for them to get a clear picture. He also wanted to do some additional testing, and it was quicker and easier to do with me hospitalized than try to do it outpatient.
So, that’s what we did.
Hospitalization: a new trauma
I got admitted through the emergency room. This meant that I spent pretty much the entire day into the evening on Tuesday lying on a gurney near the emergency room waiting for a bed to open up.
It wasn’t fun. I was constantly shaking still, and was tired. There wasn’t really anything for me to do, and nobody was really paying attention to me.
I think my dad drove me up and waited with me at least some of the time, but I know I was alone when I was finally admitted and taken into a room.
The staff there were reasonably nice to me, but it turned out that the neurologist wanted me to get an EEG while sleep-deprived, so the nurse’s job for the night was to make sure I didn’t fall asleep. So I lay there, tremoring, and kept myself distracted the best I could.
In the morning, I got the EEG and they tried to induce a seizure.
EEG’s aren’t particularly fun, and more time is spent on preparing you than the testing often takes.
There needs to be a good connection between the electrode and the skin on your head, so after they’d mark the spot they wanted to connect, they’d clear the area of hair(which felt like sandpaper on my scalp), and then use this sticky, glue-like substance to attach the electrode.
During the testing, my shaking didn’t align with epilepsy, and no other movements occurred. The technicians removed the electrodes, and all I wanted to do was take a shower.
The sticky stuff does not come out easily, and it feels really strange. My hair was at weird angles and sticky and I was tired, frustrated and feeling a bit muddled.
Instead of being able to take a shower, I was rushed off to get that MRI.
The one I had to be sedated for.
I was, of course, shaking as we approached the MRI.
They had put an IV into my arm for the sedative.
I remember one of the nurses assumed I was claustrophobic or something similar and she tried to comfort me, telling me that I would be unconscious while I was inside.
Disliking the insinuation that I was frightened, I snapped “No, I’m being knocked out so I won’t shake. I’ve had MRI’s before, I’m not afraid”. Or something along those lines.
The next thing I knew, I was back in my hospital room and my mother was sitting beside me, looking worried.
My hair was now full of that ick and it was really bothering me. Mom told me that they didn’t see anything in the MRI, and they weren’t sure what to do next.
I told her that all I wanted at that moment was to get the sticky stuff out of my hair.
I really don’t know why I was so very stuck on that, but I very strongly remember that I wanted that and wanted it intensely. It likely was the only thing I might be able to have any control over.
The nurses didn’t want me to shower because it was so soon after I’d been sedated, and argued that I needed to be under strict supervision and they couldn’t provide that at the moment.
I started to cry. I sobbed. I was hysterical in a way I’ve rarely been before or since.
I had no control over my body or my life, and the tests had proved nothing, and all that I wanted was to get that nasty goop out of my hair, and I couldn’t even do that.
I was not in the position to be anywhere near that eloquent, but mom got that this was really important to me, even though it didn’t make a lot of sense. She stated that he would supervise my showering, and the nurses agreed.
So, I went into the hospital bathroom with my mother, stripped off my gown, and took a shower.
I cried. I sobbed. I shook. I howled.
And I washed every inch of my body, poured shampoo into my hair, scrubbed and scrubbed and finally got that sticky mess out of my hair.
My mother watched me through this, not knowing what to do, as I shook, cried, and cleaned myself.
Eventually, I felt like I was clean again, and cried out, and exhausted, I dried off and put on a new gown.
Later that day, I met a urologist who wanted to give me a full urodynamic bladder test to see if he could help me get to the bottom of the bladder issues. I agreed, and we scheduled me to go in a couple of weeks later for that testing.
Experiencing bias against mental illness
My neurologist had requested that a particular psychiatrist speak with me, since I had shared my history of mental illness, and I was honestly wondering if I should be taking something for anxiety given my situation.
I asked the nurses repeatedly if he was coming to see me.
I was told he might come later.
It’s hard to get good information in a hospital, I’ve learned, because there’s always an emergency or an unexpected consult, or something else happening to change the schedule.
That psychiatrist never saw me. Instead, a colleague of his came by – I think the next morning – and she was terrible.
I was barely able to say anything to her before she declared that I was delusional or paranoid or something equally wrong, and she decided that what I needed was Depakote, as soon as possible.
In fact, she decided I needed it by IV.
As she was making this pronouncement, another nurse came in and said that a room had opened for me in the ward I was supposed to be in(apparently I had been in the cancer ward), so she declared that the moment I got into my new room, that IV treatment should start.
Now, I had been given the IV that first morning. It was now over 24 hours later, and I had been shaking and tremoring the entire time.
I’d taken a shower and lapsed into hysterical crying, and then I’d gotten dressed and returned to lying in bed shaking constantly. That IV should have been checked before using it again.
A few minutes after I was whisked downstairs to the other area, another nurse plugged me in and left the room.
A few minutes later, my arm starts hurting. I press the nurse’s call button, whimpering.
I can’t think straight, I can’t get up, and my arm is hurting more and more as a medication I know nothing about gets pumped into me.
The woman sharing the room with me asks what’s wrong, and I explain as I cry.
Nobody answers the call button.
The pain in my arm increases and the woman next to me manages to get herself out of bed and limps over to me.
She tries to figure out how to stop it, and can’t. She struggles with the line and finds some kind of clamp to slow things down. The pain eases a little, but some of the medication is dripping out of the IV.
Not knowing what else to do she returns to her bed. I thank her for trying, and lie there, hoping the nurse comes soon, my arm throbbing, and a cold liquid dripping on me.
Maybe 15, 20 minutes later, the nurse strolls in.
She’s angry that I didn’t get my medicine.
I explain what happened, and she finally looks at my IV. It had shifted position and was no longer hitting the vein. She removed it and called in a phlebotomist to make a new one. A while later, that gets done. The new IV is in my hand, making it hard to do much.
I finally get the medication intended for me, that this new doctor demanded, and it does nothing.
My boyfriend sees me later that evening. The way the room is set up, there’s only one side he can easily sit on. He tries to hold my hand, but it’s the hand that has the IV in it.
Moving or using that hand is painful. We can’t find an easy solution. He stays for a while and I cry about my treatment and the unknown, and he awkwardly tries to comfort me.
Eventually, he leaves, and I stay, wondering how much longer this will last.
That night, I fall asleep slowly, frightened, upset, and insecure. I can’t trust my body, I can’t trust the nurses, the psychiatrist was the opposite of helpful, and nobody knows what’s wrong with me.
The next day, my neurologist’s colleague comes to see me. She explains that the tests are all clear and they can’t identify the problem.
She tells me about a clinic in the city that treats movement disorders. She suggests that I call them and make an appointment. I do.
The next available appointment is a couple of weeks away. I shrug and resign myself to the wait.
I spend one more day in the hospital. I still tremble and shake. I still don’t know what’s happening.
The confusion and frustration hit me and leave me wanting to feel something, and I suddenly have a strong urge to dig my fingernails into my skin, scratch myself and leave some kind of physical mark to release the emotional pain inside of me.
I remember this desire from my teenage years, when aspects of my depression expressed this way. The urge is familiar.
Even if I gave in to it, the damage to my body wouldn’t be severe. But I don’t want to give in to this urge. I don’t want to be ruled by it. I know what I need: distraction and company.
A nurse comes in my room. I tell her that I’m having an urge to hurt myself, could she possibly spend some time with me? I just need somebody around.
She says “Oh my god, she’s suicidal” and leaves the room, ignoring my protests.
I’m alone, misunderstood, and still shaking.
Sometime later, I’m ushered to the central desk.
The psychiatrist that I was supposed to see is on the phone. He and I talk. I explain what is happening, and how overwhelmed and frightened I have been feeling.
How the other psychiatrist spewed nonsense and put me on an overly strong medication that did nothing. How I have a desire to cause some visible damage to myself to get the pain out.
No serious damage, just scratches and things to make it visible. I’m not suicidal. My uncle had died by suicide, and I would never do that.
The psychiatrist, understanding, tells me he’ll speak with the nurses and explain. He’ll make it clear, and I should go back to my room and pack up. I’ll be going home soon.
A nurse comes over, and I hand the phone to her. I quietly return to my room and gather up what little I have.
A few hours later, my parents pick me up. My mom tells me that I was almost put on suicide watch, which would have forced me to stay in the hospital an extra 48 hours.
I just want to go home, I tell them. So we pick up my new prescriptions and go home.
Waiting to learn the truth
The next week, I went to work and realized I really couldn’t do it. I didn’t feel safe driving with the movements I was having, but they had a house I could stay in since the research was going on all hours, based mostly on tidal patterns.
I was still tremoring, but it seemed like mostly if I was doing something it wasn’t as bad. I was on a new antidepressant and an anticonvulsant or two. They made me tired, and one day I literally fell asleep while working on the beach.
My thinking felt slow, I wasn’t able to focus well, and I was still tremoring all the time. I couldn’t comfortably do most of the work they needed to be done. At the end of the week, I was asked to tender my resignation so they could hire a replacement for me.
I cried, but did as they asked. I really couldn’t do the work they needed. I was only leaving the job a few weeks earlier than initially planned, but I did have the other job to go to, and my plan was to use the intervening time to try to sort it all out.
Since all of this was taking a toll on my mental health, I decided it was a good time to start seeing a therapist again. I also recognized if I was going to take antidepressants, I probably should find a new psychiatrist.
I made appointments, and went to them, and otherwise tried to take it easy.
The urologist appointment confirmed that there were no structural problems, but he couldn’t find a cause for my urgency.
Finally, the day came. My father took the day off from work to take me there, and off we drove.
After navigating through the traffic and finding the parking garage, dad and I finally got to the right section of the campus. We got to the part of the neurology department that focuses on movement disorders, and then we just had to wait. And wait. And wait.
Dr. Mazzoni was not timely, but when I finally saw him, that really didn’t matter. He asked permission to record my symptoms and I agreed.
He performed a variety of little tests, recorded me talking about things I liked to do, and recorded me walking up and down the hallway.
After he gathered all this information, he told me that he was 99% sure he knew what I had. It’s conversion disorder.
He explained that the way my movements worked and the fact that they would decrease or shift when I was distracted strongly indicated that it was conversion disorder.
Also, he explained, my movements themselves didn’t align with other conditions. They weren’t tics or seizures or any other movement disorder that he was aware of.
Everything I told him suggested that they occurred or increased when I was under stress, which was another hallmark of the condition.
He wanted me to see a specific psychiatrist he knew to confirm the diagnosis. He also told me that very often, conversion disorder was also associated with bladder issues such as what I was dealing with.
What should I do?
He told me it sounded like I was heading down the right path.
For some people, conversion symptoms would just vanish, and he wanted me to focus on that, and just keep living my life the best I could.
Seeing a therapist would be a good idea, as they could help me process all of this, maybe find a trigger or two, and generally try to manage my stress better.
Other than that, see the psychiatrist he mentioned to confirm the diagnosis. I didn’t need to be taking the anticonvulsants I’d been prescribed, but there was a specific one, clonazepam that may be helpful if I wanted to try it.
It was known to be helpful for nonepileptic seizures, and it sometimes helped with other movements.
I was so relieved. What I had had a name, and hope, and some treatment options. Just having a name was huge for me. Just with that time in the office, my movements had become less frequent, and I really thought that I was going to be okay.
A couple of weeks later, I saw the psychiatrist he recommended. He and I talked, and he agreed that the conversion disorder diagnosis fit and made sense.
I told him what Dr. Mazzoni had prescribed and he agreed. He encouraged me to find a good psychologist to talk to, and offered his services as well, but he didn’t accept insurance and so was way more expensive than I could afford as a regular thing.
He understood and wished me well.
I finally knew what I had and had a bit of a plan for how to manage it.
To this day, I feel indebted to Dr. Mazzoni for figuring it out, diagnosing me, and being able to explain in an understanding and tactful way, so that I never doubted that he believed me.
Wow that’s such an incredible journey to diagnosis. I’m sorry you had to go through it all.
Thank you. It wasn’t easy and I’m so grateful that I was able to find good allies as time progressed!
You’ve been through so many experiences Alison! Do you sometimes feel you’ve lived many lives in this one life? I am very grateful that you share all that you do because we get to learn so much from you.
Shruti – thank you! I’ve had three different careers really. I started out in biology and drifted towards fishery science. After my diagnosis I had to rethink everything and ended up going into Geographic Information Systems – and I worked in that for several years, and taught the subject in a few community colleges. I then was doing well enough that I decided to go to graduate school, where I trained towards consulting work and organizational management. Graduate school really severely increased my symptoms and I was really limited in what I could do, so I ended up dropping everything I’d been doing(including my GIS consulting business). After graduation, I eventually found an amazing treatment program which left me in better shape than I’d been in before I started graduate school, and then a few months later, my partner Al broke which triggered a relapse. I decided to start the blog after he and I had recovered enough for me to have the energy to do something. 🙂 You could say I’ve lived a few different lives, but there is a thread through them – my interest has always been in systems and how they work(and don’t) and the thread of being disabled and different has also been consistent. I’ve just put them together with my love for writing to develop this blog!
Thank you for sharing this, Alison. This is the kind of thing that indeed needs putting out there. How many others are there out there that have twitches that are not normal shakes they had gotten before? How many others have had that very unhealthy romance that throws them into a very dangerous place? How many have been ignored and treated like they’re just stressed? So many. I hope your story reaches all those who need to hear it.
Katie – thank you so much and I hope it does too!
FND is a really weird condition because each person pretty much has their own symptom set based on where their brain scrambled information – or what area is weaker/more inclined to fuzz the reception. I know there are quite a few conditions out there that doctors have a hard time identifying, but that just makes it more important to give them hope that there will actually be a diagnosis!
I also know that some people may, like me, have a bit of la belle indifference – a lack of concern/fear over their symptoms. My whole blog is built to help others learn fro my experiences so they can take the points where their experiences echo mine and learn how they may handle it better than I did – or at least better than they would otherwise. It is way too easy, especially for disabled folks, to fall into unhealthy and/or abusive relationships and not know how to get out. I was fortunate this happened in college when I did have a support system and ways to get away from him. And yeah, my symptoms were really strange and didn’t fit any molds. Kind of the story of my life!