Hi There! I decided to share my symptoms in case you were curious about FND or if you’re searching for answers regarding your own symptoms. By the way, if you do have similar symptoms, I’d love to know! I’ve only met one other person who had very similar symptoms to me.
Below are three different snapshots of my symptoms since they started during my adult life in 2010. According to the neurologist at NIH my symptoms presented in a way they had never seen before. My official diagnosis from NIH is Functional Paroxysmal Dystonia. Paroxysmal Dystonia means that my dystonia, uncontrolled muscle contractions and movements, come and go in waves or episodes.
I also want to note, that while many FND patients share some of the same symptoms, most of us do not share all of the same symptoms. If you have recently received an FND diagnosis or are looking for more information about it, I highly recommend checking out FND Hope and Functional Neurological Disorder (FND): a patient’s guide.
Without further ado, here are my symptoms of Functional Paroxysmal Dystonia. You can also read more about my journey at Part I: How My Life Changed Forever.
The first list contains the symptoms I experienced during the first two years I was sick. This list started on August 2, 2010, and was updated as new symptoms arose. My symptoms were triggered while I was fighting a bad infection, and they were sudden onset.
- Muscles feel weak on the side of my mouth
- Slow speech – I’m not sure if it’s slow speech as much as I think my muscles are contracting in my throat making it difficult to speak. It feels like I have to push the sound out sometimes. In the beginning, it was not frequent but now it probably occurs at least once a day, and recently I’ve begun to stutter when it’s hard to push the sound out. While I was in the ER on August 2nd there was a point where I couldn’t formulate any words, and only sounds came out, but I knew what I wanted to say and I could type it on my fiancé’s phone.
- Brain Fog/Feel spacey – this comes and goes and is not as frequent as it was when the symptoms first started.
- Heartbeat flutters – usually in the shower but also when it’s really hot outside. The first time I had them I was in the shower and did almost faint, but since then I just turn the water colder, and they go away.
- Slow movements – my arms and legs were moving extremely slow especially when I went to the ER on August 2. I would say now that slow movements only occur when my arms, hips, or legs feel really heavy, and it is hard for me to move them.
- Muscles were so weak that my fiancé had to hold me up by my armpit so I could walk from the car to the ER on August 2. Since then muscle weakness comes and goes for my arms and legs. For my legs, the weakness is most prevalent when I walk and when I try to move my legs sideways or at a diagonal (when lying down).
- My right leg does not function properly when I walk. The muscles don’t seem to contract correctly when the weight shifts to that leg and hip, and they bend before the muscles tighten to support the weight. I got a cane which helps me to be able to walk upright.
- Muscle aches in arms and legs – My arm and leg muscles ache every morning and evening, any time I’m not moving for a while or when it’s really cold outside. The pain usually goes away once the movements start, but I will feel it again throughout the day. It becomes so uncomfortable at times that I need to take ibuprofen. The ache feels like growing pains or how a broken bone aches, only the ache is in my muscle instead.
- Week of August 11, I started having difficulty moving my legs while lying down, but I could still walk and wiggle my toes. This symptom has pretty much gone away, but it is still difficult to move my legs sometimes while lying down because they feel extremely heavy and if I want to roll over I may have to use my hand to assist in moving my leg.
- August 24 around 7 am, I woke up with muscle contractions in arms and legs. The contractions started in my right leg then the contractions were both legs or right arm and right leg. Then all at once my stomach, right arm, both legs, my hips, neck, and my right hand contracted. The right hand got so contorted that was painful.
- Happens during the day and night
- Mostly occurs on the right side or in the abdomen. My hands, feet, and abdomen can contort into uncomfortable positions. Contractions probably last 30 sec or less.
- Sometimes stomach tightens so hard that it makes it hard to breathe because it restricts the movement of the ribs.
- Sometimes my hands clench into a fist or go into a claw position, and I cannot relax them on command with my brain. I can relax them through with the help of my other hand
- August 28 – uncontrollable right foot rotation and right arm and hand rotation started.
- August 29 uncontrollable body movements – entire body – could not stop in order to go to sleep. The body movements are very rhythmic:
- Right shoulder circular movement
- Both shoulders shrugging
- Both shoulders alternate up and down
- Torso – moves side to side
- Torso crunch – abs tighten and release over and over
- Hips – usually when seated and accompanied by a contraction and they move up and down
- Legs – it happens so infrequently I don’t remember how to describe it. The legs are usually more involved in the contracting than the movements
- Hands – if I’m holding something like a napkin they move the object around kind of like if I were fidgeting with it
- Feet when lying down they will move sometimes.
- Throat – long contraction affects speech, and sometimes I suck in air. Quick contractions
- Feel fatigued after walking around for a little bit or doing chores around the house
- Eyeball flutter/twitch – very infrequent but it’s bizarre when it happens
Symptoms during Remission
My remission occurred from September 2012 – December 2015. I was able to come off all medication during this time.
- Dystonia (uncontrolled muscle contractions) – mild but still occur daily. Usually, only happens when I’m tired or if a storm is coming. Mostly right toes are curling at night. Sometimes have mouth/neck contractions and vocal cord contractions.
- Fatigue – can work full time, but I have to rest when I get home in the evenings and one day on the weekend.
Symptoms since the Relapse
My relapse started in December 2015. It started six weeks after I had a c-section and was juggling a newly turned two-year-old and an infant. I want to mention that I did not have post-partum depression, and I was, in fact, the happiest I’ve ever felt when my relapse started.
- Right toes curling and right-hand curling
- Mouth and neck contractions
- Contractions of vocal cords
- Uncontrolled movements of the entire body, usually between 8 pm – 9 pm. After the episode occurs, I crash and fall dead asleep. It is almost impossible to wake me up for a few hours. I sometimes can fight myself to wake up but it is only for less than a minute, and then I am dead asleep again. I’m usually able to wake up and stand up anytime between 11 pm – 1 am.
- Gait/walking issues
- Brain fog
- Arm weakness
- Leg stiffness
- Speech problems
- Tingling/numbness in hands and feet
- Sensitivity to heat
- Causes chest flutters
- Faint feeling
- Sensory sensitivities
- Too much noise, certain lighting (like in grocery stores), and visual overstimulation can trigger dystonia and brain fog
In addition to daily symptoms, these symptoms can also occur:
- Muscle pain in legs and upper arms – daily during winter months
- Leg weakness
- Inability to move my legs without the help of my hands while lying or sitting down
- Eyeball twitch
- Left side affected similarly to right above
- Torso contractions which may also cause my torso to lean to one side
If you’re new to FND check out these links below to learn more:
If you want to read more about my journey, check out Part I: How My Life Changed Forever.
I have almost all of your symptoms (again, as you said – some I don’t have like physical speech problems, but I have awful brain fog, and I have lots of other symptoms).
I’m glad I’m not alone, but I’m sad I’m not alone too, as I’d not wish this on anyone xx