Let's Talk About...Symptoms

Today I'd like to address something that's complicated, varied, and different for every single person with FND...symptoms.

If there's one word I could use to describe the FND symptom spectrum it would be the word "tapestry." Why that word you ask? Well, because FND symptoms are like a tapestry in that they are; complicated, interwoven,  closely tied, the colors of each thread could be light or dark, textures could be smooth, or ragged and most of all....utterly unique to every individual like a single thread in a woven tapestry. There are actually a few words I would LIKE to use to describe FND....but I will leave that to your imagination! (Remember folks, I often use "colorful language" which goes along with the theme I must say!)

Let's begin with some well known symptoms: (resource: https://fndhope.org/fnd-guide/symptoms/)

Seizure's- better known as Non Epileptic Seizures or Functional Seizures. Not everyone experiences seizures, for those of you who do....I am so sorry, it sucks shit.

Chronic pain- this can be from subtle pain, to excruciating. Please read my blog on pain for more details on this miserable topic!

Brain fog- I hate this symptom the most.... it makes you feel like you've been drugged, or that you're hung over! It covers things like mental fatigue, inability to think clearly or critically, memory loss, difficulty maintaining focus, and an inability to complete tasks. This symptom makes me feel stupid every single day...

Gait issues- gait covers everything from difficulty walking, loss of balance, vertigo, dragging feet, etc. I have the joy of feeling like my right knee buckles... very graceful! For some, the gait issues require the use of a cane or walker to get around safely. 

Loss of limb function- an inexplicable sudden loss of the ability to move limbs. This symptom is especially frightening! Imagine waking up one day and not being able to move your arms, or legs?? Of course the first thing that comes to mind is a stroke, right???  Some people with this symptom have to make use of a wheelchair to get around.  It really is very disabling and devestating.

Headaches or migraines- these can be daily, or occasionally. Triggers range from stress, lack of sleep, loud/noisy environments, busy crowds, flashing lights etc. OTC meds can help, but not always. 

Involuntary movements of the body- tremors, muscle spasms, twitching or tics, difficulty swallowing and/or speaking. I get these weird muscle twitches where my toes will wiggle on their own...and muscle spasms that can take my breath away, especially when they happen in the ribcage or lower back.

Paralysis/weakness- I used to be the girl who loved weight lifting at the gym, and never had to ask my hubby to open jars for me... not anymore! This symptom includes problems with fine motor skills (dropping things), loss of movement, and sudden weakness  (I've broken a few glasses in my kitchen with this one....and hanging clothes on the line is when I get my squats in due to dropping the clothes pins! lol)

Sensory changes-  includes feeling like you have bugs crawling under your skin, itches that won't go away, pins and needles sensation, visual disturbances (I get blurred vision in my right eye frequently), some persons report changes to tastes and/or smells but this is very rare. Hmmmm, if I lost my sense of taste it may help with my sweet tooth addiction....nah, who am I kidding?

Changes in speech- stuttering, loss of speech, voice changes, and word finding. This symptom is quite embarrassing for me. I am an avid reader, and have always had a good grasp of language. Now I will try to say a word, but it won't come out, so I have to describe the word I want to say like a "dictionary meaning". OR, a totally different word will escape my mouth!! (It can be funny, or not depending on the circumstance... kind of like a real life "auto correct" )Sometimes I slur words, or I will be talking and then the subject just fades out of my mind and I don't even know what I was just talking about. It's so frustrating! I can be chatting along fine, and then a wave of brain fog hits... and BAM...that's it! No more intelligent conversation with me until it clears. 

Wow, reading back on this list it's really just the tip of the iceberg! Scrolling through the FND Facebook page I see so many people with symptoms I never could've imagined!  Here's some examples of what I've read:

muscle burning             audio tics               electric current going through the body                muscle tightness/rigidity

pain in spine                    extreme exhaustion            brain "zaps"          bowel and bladder changes      heaviness of the head/body

sensation of skin/mouth burning            pain in joints         fainting             amnesia

And that is not every symptom! All of us with FND experience a range of symptoms like these every single day. They vary in frequency, strength, and how long they last. Symptoms don't usually happen as stand alone instances, they gang up on us and happen in clusters. 

It's so strange to me reading posts by other FND warriors how this illness can still be so little known! When I was first diagnosed, I didn't know of anyone who had FND, let alone heard of it! Now, a few years later....I know of SEVERAL  people within my acquaintance circle who now say they have it! I guess on one hand, doctors are becoming better able to recognize it, and hopefully providing earlier diagnosis. On the other hand....what the hell is going on? Why are we developing this illness in the first place? Interestingly....as a side note.... long haul Covid sufferers are experiencing many similar symptoms. Coincidence?? I don't know. One thing that brings me hope is that the incredible number of  Covid long haulers will spurn research, and those of us with FND may benefit from that research. Perhaps scientists will discover that our neurologic disorder stemmed originally from a viral infection? Perhaps an immune response gone haywire? 

In the meantime, lets spread the knowledge, awareness and advocacy. Let's support each other on this shitty journey up cluster f$#k creek with our broken or nonfunctional paddles.... lets throw around a few swears, gather up our best sarcastic jokes, listen to our favorite music, and spend time with our best peeps. Life is short so F#&K FND!

If you've read this far, thanks! Please feel free to share your shittiest symptoms with me, and providing permission I will share your misery with our fellow FND warriors!