In the beginning of my journey with FND, I found it extremely hard to predict when I would have a "good" or "bad" day. It always seemed the worst days would come randomly and I felt so out of control of my own body. It took a ton of trial and error to understand what triggered my symptoms to appear more harshly vs what kept them in remission. I read everything I could think of that was adjacent to FND, because back then it was still mostly referred to as conversion disorder and I had very little information to go on. I thought that if I understood more about the brain I could eventually understand how to help myself, or at least get in the right direction. I've used tips from migraine prevention, TBI care, seizures and concussion care, along with personal methods to help my FND flare ups.
Prevention is better than damage control, but as chaotic as FND is, it's hard to be perfect 100% of the time.
Prevention:
I live everyday with the mindset to "decrease the discomfort" in every way possible. I use cushions on hard seats, schedule more time than I think I need in the morning, I always have snacks with me and I never work out if I don't feel well. I stay in the A/C in the summer. The less I had to fight for comfort, the longer I could keep my energy for. I never put myself in situations where it would likely cause a flare up.
My second prevention method is to "increase the buffer" between strength and weakness.
Let me explain.
I thought that if I could increase my fitness levels and eat well, it would overall help my coordination, bring my muscle mass back, and help my energy levels and stamina. I knew that no matter how strong I got, I would still have flare ups days that took away my ability to walk, talk, think and breath normally. Though, my idea was that maybe I could give myself a greater threshold for that weakness and so far, it has worked for me. Years have gone by since my diagnosis, I've stuck to exercise in any form I could and eat as healthy as I can and I believe that these two things have helped tremendously. FND is the reason I became a personal trainer.
Damage control:
During flare ups, we aim to relax the tremors and shorten recovery time.
1. Surroundings are important: Have a clean, comfy, quiet space to recline in or lay down. Keep the lights soft, and noise at a low level. We want to relax the nervous system by creating an environment that we can rest in.
2. What to do with your hands: Limit anything that requires coordination or decision making or lots of stimulation. Don't play video games, crochet, knit, count, write, draw, scroll, or read. Instead, listen to relaxing music, or an audio book. Even play a comfort movie to listen to in the background. Have your pet close to cuddle with. We want to give our brain and senses a break, and not do anything challenging while we recover.
3. Replenish: Take your creatine, it supports brain health. Drink it with some electrolytes to hydrate and resupply what was lost during tremors. Avoid caffeine, as that stimulates the nervous system and takes us farther from our goal.
4. Personalize your recovery: A hard task that FNDer's go through is figuring out what specifically causes their symptoms to act up and then treating it. If heat is a problem for you, have an ice pack on standby in the freezer. Keep plenty of salty snacks to lessen POTS symptoms. Use mobility aids if you have them. Personally, lots of visual stimulation triggers flare ups for me so I don't go into grocery stores or to large crowds. I order groceries to pick up and attend activities in more intimate settings. If big meals are an issue, make the effort to portion out the meals throughout the day. Do whatever specifically helps you, and stick to it!
5. Be on the same page with yourself: Do not push through the low energy or discomfort. For a healthy person, pushing through low energy isn't a bed ridden sentence. Low energy for us is like a huge warning sign that we either listen to or we are forced to listen to. Use those time management skills and schedule yourself time to work & time to rest. Rest is an extremely important part of recovering. Listen to your body and be kind to yourself.
Pictured is a lake in Grand Teton, we took it last week while camping.
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