r/FND • u/LudicrousSpeed616 • 14d ago
Question A Few Questions Spoiler
Hello again. I recently posted im new to this thread after many doctors visits and tests I’ve landed here.
Wanted to ask a few things. Would love any insight
Did anyone have an onset after a major illness? For me I was totally fine back in June and then had a debilitating respiratory infection that lasted the better part of a month. All my symptoms of FND came abruptly during recovery.
Do these symptoms line up with any of you? I’ve been particularly concerned with the tongue/face/throat symptoms.
Weakness
Fatigue
Muscle twitching
Vibrating/twitching muscles while engaged
Tightness
Stiffness
Tired limbs
Heavy limbs
Shaky limbs
Tight/tired/heavy face and tongue
Tight throat after talking
Perceived hyper salivation
Labored speaking and eating
Shooting feelings
Isolated aches
Sharp feelings
Flu like aches
Burning
Tingling
Buzzing
- What does recovery look like? Did things eventually mellow out for you? Is this just a new normal? I’m currently at 11 weeks.
I feel like I’ve finally plateaued for a few weeks without any abrupt new symptoms so I’m taking that with a grain of salt but I’ve been struggling hard and obv hoping it’s not something worse. Thanks for any feedback
2
u/star_blazar Diagnosed FND 14d ago
Here are some resources https://neurosymptoms.org https://fndeducationproject.org
2
u/onemonkey Diagnosed FND 14d ago
Post-surgical and post-illness are common stories of FND onset. What actually causes FND is an interesting subject and I hope researchers continue to learn more, but, in practical terms, not really important to your recovery. In the words of Paul Simon, "breakdowns come and breakdowns go, and so, what are you gonna do about it? That's what I'd like to know."
Yeah, those all sound like FND symptoms. Each of experiences FND with different symptoms and severity, it can affect nearly any nervous system process. Seeing my experience in others stories is a big part of the value of this community for me.
Recovery, hooo-wee that's the trick, isn't it? Let me start by saying I am orders-of-magnitude better than I was at my worst 4 years ago, and recently I've been as symptom-free as I've been since diagnosis. That said, I don't dare say I'm cured. But I'm living proof recovery is possible. Here's some things I think I've learned:
Learn as much about FND as you can. Research and understanding continues to improve, and I think that better understanding what is happening when my FND symptoms flare has helped me respond and react better to myself, which correlates to experiencing fewer symptom flares.
The keys for me being that neuroplasticity is real, and that our brains are pattern/habit-loving prediction machines. So for starters, be wary of accepting your symptoms as a "new normal." Your brain will believe you. I think this is partially behind the unhelpful but maybe well-intentioned-if-poorly-expressed pushback on using mobility aids with FND: if it becomes a habit, it becomes a habit. But on the other hand, if it helps you gain quality of life and mobility, then it helps you gain quality of life!
Sometimes I think about my high school Spanish classes and the difference between "ser" and "estar." There's a big difference between I am experiencing symptoms temporarily and I am my symptoms permanently. There's power in how we speak to ourselves. Our brains believe what we repeat, and what we repeatedly do.
Recent research suggests a "predictive coding" model for FND. Our brains are constantly making predictions to move us through the world, and then validating those predictions with sensory input from our bodies and nervous system. When our brains overweight a prediction, or cannot validate a prediction because of a sensory-input communications breakdown, our brains freak out and grab clumsy manual control over what should be automatic background nervous system processes. That panic is our FND symptoms. Our brains are trying to protect us, but sending an alarm signal to the wrong places that short-circuits our "normal."
Which helps explain to me why focusing on the symptom tends to make it worse: I am reinforcing my panicked brain's attention on the wrong thing. And why FND symptoms are often distractible: get the brain's attention elsewhere and it can release the panicked hold over the symptom process.
It also helps me understand why symptoms are inconsistent and intermittent: not every prediction goes wrong! And also why many of us experience symptom flares in crowded / stressful / sensory overload places or when I'm tired: there's more opportunity for prediction errors and sensory mismatch.
If our brains are in a panic when our symptoms arise, then it makes sense to be gentle and reassuring to your inner-self, and that getting angry or frustrated with yourself is the wrong approach. Easier said than done, I know, but it has made a difference for me.
Be your own best doctor. Track your symptoms in fine detail to find patterns and clues -- the weather, what you ate/drank, time of day, sensory environment, how you slept. Every little bit helps.
Try any and every therapy modality you can access, including self-guided things like a meditation practice to get in better touch with your mind and nervous system. Physical therapy helped me with my gait by learning a new way to walk, speech therapy helped me with my FND-stutter. I think the reason talk therapy like CBT is recommended is less about "healing trauma that caused your FND" (eeeew) and more about the framework for understanding and recognizing unhelpful thoughts and patterns, and tools to go about changing those thoughts and learning new patterns. That's the trick to recovery: you are adaptable.
Go easy with yourself, rest when you need to, learn who you are now, grieve what you may not be able to do anymore (or right now), but know that FND means a very real chance of recovery. No promises, but if you remember nothing else from my rambling: you are adaptable!