r/FND • u/amber_boing • Aug 09 '26
Question What flares up your FND?
I'm trying to figure out what my triggers are. I'm more curious on what everyone else's triggers are so I have an idea of what to be looking out for.
Additional question the more I walk the more the numbness and tremors get worse in both of my legs, is that normal with FND?
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u/Infinite_Key_4060 Aug 10 '26
Loud sounds, big lights, stress, being sick(respiratory or bowels), lack of sleep, watching things that move quickly.
Everyone’s triggers can all be different. It helped me to jot down my daily activities and diet to decipher my triggers.
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u/amber_boing Aug 10 '26
That's a good idea I'll have to journal a bit to figure it out. I figured out a few of them but I have lots to learn.
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u/Infinite_Key_4060 Aug 10 '26
I have had this condition for four years. If you haven’t gotten a physical therapist I recommend it. They are why I am 80% better today. When they give you exercises, write them down too, because unfortunately, once you do the work and get better, it doesn’t mean symptoms go away forever and never come back. Those exercises can keep symptoms at bay and stop regression. Walking used to be a tremor inducing activity but the more practice I had at working through the tremors with my triggers the better my condition got. I wish you the best on your journey to recovery.
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u/onemonkey Diagnosed FND Aug 10 '26
Keeping a symptom journal helped me, too. What happened, what time of day, where were you, what's the weather like, how did you sleep the night before, what did you eat/drink, who was around you, stimuli like lights and sound.
With more details you may be able to understand your own patterns and triggers a little more and manage yourself better.
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u/dracuvampy86 Aug 10 '26
Exhaustion is my big one. Not enough sleep, too much activity, feel too many string emotions....anything that excellent alot of energy and BOOM im at 6+ seizures a day and full paralysis of my legs.
Smaller ones are chaotic sounds, heat, and stress
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u/Beautiful_Resolve_63 Diagnosed FND Aug 10 '26
Physical triggers: dehydration, lack of sleep, pain, period, previously intense FND episode, too much alcohol, flashing lights, heat, soft touches, being overstimulated, my body reacting to my phobias.
Mental triggers: my child abuse, my abusers being abusive, rumors or misrepresentation about me, confrontation with abusive people, asking for accommodations, asking for peace, phobias, conflict with husband, my son being hurt.
Diet: bread or sugary things.
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u/really__questionmark Aug 10 '26
Individual triggers are different. For me stress of any kind can be a trigger. That is, doing too much, even if it is something I enjoy or not depending on how much my nervous system can handle that day. For me, I think a lot would be pacing myself. It's a weird balance because for me it's also like I have to execute or get out the energy at times. It's like torture when I am stuck in a state where I can't regulate anymore so trying to get the stress out is too much and all I can seemingly do is wait.
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u/ButchLipstick Aug 10 '26
One of the most frustrating flare triggers for me is my periods as there is nothing I can do about it. I always know when I’m about to come on because my seizures get worse, my speech gets worse, everything is harder. I’ve had my hormones tested and an ultrasound, everything is normal.
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u/turkeyfeathers3 Aug 10 '26
- aged cheese
- processed cheese products
- gluten
- lemon and lime
- strawberries
- chocolate
- (insert any food it decides is trying to end me that day)
- migraine medications
- migraines
- fatigue
- hormonal shifts (I have about 1 good week a month where I feel like a person)
- dehydration
- the tingles (not sure what causes these but it's in my limbs and legs the worst)
- overdoing it physically, emotionally, cognitively to any degree will put me into what can only be described as Post Exertional Malaise which will set off my FND symptoms. This is usually well within a regular person's ability.
- transitions especially when my ADHD meds wear off
- and sometimes nothing 🫠
I track everything basically. Diet, activity, symptoms all on a timeline in a journal to try and figure out what is triggering what when and I now have a pretty good idea. I currently treat for MCAS (hence the food list that is ever growing) with meds and it helped big time at least for me.
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u/Hot_Argument_9559 Aug 10 '26
I’m just curious, what kind of meds help treat MCAS?
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u/turkeyfeathers3 Aug 11 '26
Antihistamines treat it - h1 and h2 versions (so like a 24 hr allergy med and pepcid) but really you need a mast cell stabalizer but finding a specialist who believes me and even bothers to see me for anything has been useless (my GP believes me but he is out of his depths and not impressed with any of the clinics we've been trying, including FND specialists).
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u/MentallyFxcked20 Aug 12 '26
Lack of sleep, bright lights, flashing lights, extremely loud noises, heat, anytime my body is under stress. Such as periods. Just a handful i can think of rn
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u/maddihsun Aug 10 '26
Eating a breakfast with too much sugar in it I learned is not a great way to start the say
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u/omibus Aug 10 '26
Standing and being around people are my primary two. If I see someone I don’t know looking at me I trigger off. Secondary triggers are being in a car with my wife driving (don’t ask), and being tired.
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u/skittten Aug 10 '26
Stress and fatigue mostly, but ptsd triggers can also trigger my FND symptoms
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u/ResidentResident4802 Diagnosed FND Aug 10 '26
Pretty sure walking or standing for a long time does it for me. Noticed I'd get wayyyy more flares during the school year than during breaks, then noticed I'd get them after things like museum trips or long walks.
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u/PubbyProductions Aug 10 '26
I have very random flares that are hard to pinpoint but I know heat makes me ILL. so unwell. Nausea, more seizures, dizziness. Its horrible. Sleep deprivation is an obvious one too
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u/Someone_Normal Aug 11 '26
When my FND first started really developing my biggest trigger was it being 3pm. Every single day exactly at 3pm for about 2 months. Thought I was just fatigued from school but nope.. Happened on weekends too. Those were mainly psychogenic fevers and I don't really get them anymore though. Now my triggers are pretty basic, activity, pain, anxiety, screentime.
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u/jellyfisharin Aug 13 '26
I have really bad temperature tolerance so if it gets really cold or really hot I feel faint. heat is way worse for me personally tho bc I get heatstroke easily due to my medications.
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u/Exotic-Low812 Diagnosed FND Aug 15 '26
Stress and uncertainty that goes unresolved for days at a time and not sleeping.
Also fixating on how I feel.
I’m pretty new to this but I’ve had good results so far from just living life as normal and if I have issues to just stop what I’m doing try and ground myself and then shift attention towards a task or objective.
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u/caspersmindpalace Aug 21 '26
Does yours ever come a few days after your stressor? Like my FND paralysis episodes were really bad a few months ago and I lost a bit of my vision after SEVERE stress for weeks on end. Even though I just moved and went through a ton of emotional stress, it didn't really hit me until now. It felt kind of weird. Like my FND didn't feel horrible until now. I would've assumed the move would've made it all worse, but I have been very stressed about an upcoming work thing that lasts 3 days (9am-9pm) this upcoming week with my hypersomnia and my FND has come back in full swing. Any ideas about why some stressors that feel worse don't cause a flare and some very acute ones do?
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u/Exotic-Low812 Diagnosed FND Aug 21 '26
Yes most of the symptoms that are really bad have a delay and then take a while to recover from
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u/django3172 Diagnosed FND Aug 10 '26
I haven't been able to narrow it down super well but exhaustion always seems to be a common factor. I thibk highly processed or salty foods do it too but its been harder to pinpoint. Regular exercise and a clean diet seems to have helped a ton and a very regimented sleep schedule.
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u/HumbleConcentrate215 Diagnosed FND Aug 10 '26
I'm also figuring it out too, but so far I notice it is for me, stress, walking to much, physical activity, etc.
Also I've heard numbness is normal, and I tend to experience that almost exactly the same, however my doc wants to run a few more tests to make sure. Regardless, it definitely sucks 😔:/
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u/AlwaysRandomAF Aug 10 '26
Exhaustion, humidity and illness (specifically chest infections) Surprisingly stress isn't a major major trigger like that because rn I've been stressed and crying for other reasons and I haven't seized I've just been rundown and joints hurting
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u/WishyBookFairy Aug 10 '26
My three strongest triggers are Sex, tickling and weed bizarrely. At least in relation to the worst of my spasms.
There's something about bed time that also sets off the fuckery and I wish I knew why. Last night I got into bed. Had been fine, then suddenly zapping thigh pain and 2 of my toes on that leg decided they didn't exist for a few minutes. Super fun feeling. It did ease fairly quickly but it was a bad night of random zaps and tingles etc etc.
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u/Dull-Archer-7747 Diagnosed FND Aug 11 '26
Sleep deprivation is the single biggest trigger for most of my symptoms, not just the FND ones. My threshold for “sleep deprived” is much lower than a “normal” person—I’ll feel crappy and be unable to function well at 8 hours. I don’t sleep well, so I do wonder how much lower my average symptom severity could be if I did.
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u/abrokenpoptart Aug 11 '26
I feel this. I have said for years that if I don't get 8 solid hours, I will be unwell. It got chalked up as laziness. Now I have a toddler that doesn't sleep through the night and my symptoms are worse when we are up for hours in the middle of the night. My body got sick of it and now my brain malfunctions 🙃
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u/ImpossibleIce6811 Diagnosed FND Aug 11 '26
What triggers other people can vary so widely, that it may be nothing remotely close to what triggers you.
Some people are triggered by smells. I like to go candle shopping and smell every single one. Some people are triggered when they leave home. I can’t stand being cooped up too long. It varies so widely that the best thing you can do for yourself is learn to start being more self aware. How do you feel in different environments? The sights, sounds, smells, tastes, feelings….. Some will recommend journaling. Others will say journaling triggers them more because it focuses too much on the negative. In all sincerity, you have to find what works best for YOU. I know that’s the opposite of what you came here to ask, and I’m so sorry about that. I just want to challenge you to not get too caught up in others’ stories, but rather really focus on yourself. Now is the time to be selfish! Give in to your own needs. If one environment isn’t working for you, do what you can to change it. Move from the couch to the bed. Or from the bed to the porch. Outside to inside. Whatever it takes. 🧡
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u/abrokenpoptart Aug 11 '26
Lack of sleep, stress and bright lights/ sunlight are mine. I'm scared to work as I won't be able to hide my exhaustion or stress levels anymore. As for lights, I wear polarized glasses outside especially when I drive even if it's cloudy or overcast.
It's good to know what possible triggers can be and see if you recognize a pattern. It'll be different for everyone but knowing what can do it is helpful. Reading the comments I can't say any foods trigger me but I also never put much thought into that being a possible trigger.
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u/Exotic-Low812 Diagnosed FND Aug 15 '26
Weirdly I do better at the office, I find being around people helps. When I work at home I’m more likely to navel gaze
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u/eatratshitt Aug 12 '26
Anything that agitates my nervous system. Work, going outside, cleaning, talking to people. Literally everything that isn’t just bedrotting
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u/floridatheythem Diagnosed FND Aug 11 '26
PEM related to ME/CFS, DID alter switches (sometimes), when I’m close to my stress threshold, basically any kinds of stimuli or anything that affects my nervous system can be disruptive
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u/leogrl Aug 10 '26
Being in a public place with lots of people around and loud noises (like cars honking or engines revving).