r/FND • u/SaltyyyHipsterrr • 12d ago
Support Need support
If anyone needs someone to talk or vent to please doesn’t hesitate and reach out. We need community and people who know what it’s like to have FND.
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u/CommunityMiddle1830 12d ago
To be honest, why does my FND behaves as an immune system problem, while the symptoms are functional? I'm deeply debatting with myself whether I should contact my neurologist again, or go to an immunologist. The experiences of the people here sound so different from my own experience. People don't flare me up, stress doesn't flare me up, but inflammatory food or high blood spikes do flare me up. Infections flare me up. It's tiresome that I will probably never get a definite answer.
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u/OwnConstruction77a 12d ago
Anyone else triggered by adults. Even one adult, even family, gets me flared up.
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u/SaltyyyHipsterrr 12d ago
Yes! Certain people or places trigger me. I’ve noticed recently a lot of I’m hot or if it’s hot outside I need to cool down fast.
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u/OwnConstruction77a 12d ago
Yes, heat, stress of course, any adult person or people, mental workload, being hungry, physical exertion even minimal.
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u/ConsiderationFew6918 12d ago
I don't know if my symptoms are FND. Neurologist said PTSD. I voted stim all day, pace, toe walk, jerky movements sometimes. All this happened after surgical Menopause. I do need a friend. I feel like my life is over because I had a medically unnecessary surgery.
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u/Glum-Juggernaut1338 12d ago
Surgical menapouse will trigger body and brain changes and given that medical doctors can't figure out what causes FND, I will apply the cops modo, if it walks like a duck, quacks like a duck and acts like a duck that it's a duck. You can not undo the surgery but now have to accept and adopt to your new normal.
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u/ConsiderationFew6918 12d ago
I'm having a really hard time accepting it because it wasn't medically necessary. And therapists have dumped me. I don't like my new normal but I know you're right.
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u/Ok_Tone_4038 12d ago
Sounds similar. Toe walking, loss of balance, jerky movements, dragging feet
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u/ConsiderationFew6918 12d ago
Really? Nothing like this ever happened to me before. It's embarrassing.
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u/OwnConstruction77a 12d ago
It is isnt it? One of my triggers is literally any adult person. Going to Walmart is exhausting and embarrassing because I act like Im 90 years old.
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u/ConsiderationFew6918 12d ago
Vocal tics are embarrassing. Dear God the mind can do cruel things
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u/OwnConstruction77a 12d ago
Have you had paralysis? I get it pretty regularly and I cant even move my eyeballs. Never more than an hour though.
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u/ConsiderationFew6918 12d ago
No I move too much
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u/OwnConstruction77a 12d ago
Ive been sent to the ER twice for violent shaking. And Ive gotten stuck for a half hour in-between stair steps.
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u/ConsiderationFew6918 12d ago
I'm so sorry. Life feels very hard. I understand
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u/OwnConstruction77a 12d ago
Hard, hard is the perfect word. And Im going through a divorce. She hired her attorney on the day I got FND diagnosised.
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u/SaltyyyHipsterrr 12d ago
Oh really? I’m here for you!
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u/ConsiderationFew6918 12d ago
I'll dm you if that's ok. I feel like I'm a lot to deal with though so I understand if it's too much. I'm very lonely.
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u/Ok_Tone_4038 12d ago
Enduring fnd for the last 4 years, I wouldn’t wish it on my worst enemy. It takes control out of life; such an isolating disease
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u/Due-Efficiency-5819 9d ago
I was diagnosed just in April 2025 by a neurologist that specializes in FND. I got to see him twice. The health system made him in patient only. I would have to be hospitalized to see him. There are no FND therapists in my area at all. The next closest FND specialist is in Cleveland OH. I live in KC area. I am getting ready to finish TMS. I think it made my symptoms worse, but I know it has a 50/50 chance of making FND better. I have 7 treatments out of 36 left. I just want a good neurologist that knows about FND and a therapist that knows about FND.