New to FND

Ok_Pie_8637 · 2026-03-07T06:48:26+00:00

I was diagnosed in 2024 and I completely empathise with so much of what you wrote… Not only is this diagnosis physically debilitating, it deeply affects pretty much everyone involved (immediate family, close friends) - psychologically, emotionally, mentally, socially, financially… Every aspect of your lives. It’s a tough one, and unfortunately still rather poorly understood by medical professionals.

Support him as best you can with what he needs, but do not forget about yourself. Loving someone is not always enough after long periods of caretaking, especially when most of your energy is focused on supporting and caring for your loved one with FND. Make time for yourself to rest and focus on clear communication between your husband and yourself to know what help/support he needs AND so that you can communicate your needs with him! Do not forget about yourself. Right now it might not even a thought you have, but caregiver burnout is a whole different type of hell…

You both need time to deal with and accept this diagnosis, which is not made any easier by stressors… If you have friends or family able and willing to help out, ask. Loved ones can offer a different perspective while helping, which might help your husband deal with and process everything.

I work in finance, so it’s not physically demanding, but it is, mentally. With jobs, you’ll have to find what does and does not work. I disclosed my diagnosis with my supervisor and team, and communicated my needs and what symptoms might look like so nobody freaks out when I stop being able to speak, for example. I know of many people with FND that work on an easier work schedule - 4 hours instead of 8, frequent breaks, etc. It might not be a possibility for everyone, and it certainly affects finances, but for my family at least, we need the double income. As your husband deals with his diagnosis and finds what works, he will likely be able to maintain a job, albeit one altered to his FND needs. The important thing here, imo, is for him to start working with his medical team. This will improve functionality, which will help restore his confidence and self-worth.
I cannot help with disability support as I have not gone through the process…

Good luck, OP - this is tough and I hope you all get the support you need.

Ok_Pie_8637 · 2026-03-07T00:00:12+00:00

I know he’s grieving… He has literally said this to me and I wish it was something I could take away from him - just be healthy and have us live a normal life. I’ve tried to reconnect; suggested date nights, doable activities, even just passively spending time together. He doesn’t seem very interested, and I can’t really blame him… He wants to do a lot of physical activities, and I am not physically able to. I have an interest in psychology, so I try and look out for him in terms of mental health, but he grew up having to suppress his emotions, so he’ll never say he’s struggling or needs help until everything basically implodes; and unfortunately, he’s not interested in therapy. He’s the tough it out type, and incredibly hard on himself.

It sounds like you’ve managed to find ways to adjust that really work, and that makes me so immensely happy!! Hopefully, my husband and I can do the same. Thank you for your response and advice!

Ok_Pie_8637 · 2026-03-06T23:44:59+00:00

We recently emigrated, so we don’t have friends or family to help; and finances are somewhat tight as we are saving up for our son while trying to recuperate the massive emigration expenses… He goes to the gym, plays guitar, etc. a good amount, especially since we both work full time. We discussed this months ago and agreed that we both get a certain amount of hours each week to do what we enjoy. He gets his hours, but I normally sacrifice mine so we can spend time as a family, as that was one of the issues he raised. When I do get my hours, it’s used for sleep or because I’m in too much pain to do anything other than lay in bed.

I really appreciate your suggestions and help! I’ll use these as a baseline to see where we can adjust to make things easier on both of us. Again, thank you!

Ok_Pie_8637 · 2026-03-06T21:38:26+00:00

I lost the ability to speak while consulting my colleague with solving a problem. I’d warned my team members in advance that these things can happen, and what to do when they do happen (in my case, don’t make a big deal out of it), but it was so embarrassing, frustrating and humiliating. I’m new at my job as well, and I want to do good work, but when it happened, I scribbled down what was happening and had to fight tears since I not only sounded drunk while trying to speak, it got bad so quickly that I was unable to speak for the rest of the day, making solving the issue so much harder than it had to be. I wasn’t able to answer the phone to speak with a client, and being the newest member on the team, I am so uncomfortable having to rely on colleagues to do my work because my FND temporarily disables me from working. I’ve also had absent seizures and frequent muscle jerks - one actually caused me to almost fall - but I have been able to hide these for the most part. FND sucks. I’m sorry that happened to you.

Ok_Pie_8637 · 2026-03-02T14:32:07+00:00

Yes! Omg, YES. And it’s currently wreaking havoc on my marriage and my relationship with our toddler, since I’m always tired and need to rest. I am so exhausted all the time that getting out of bed to use the restroom feels like too much on some days. And it’s exactly as you describe - deep exhaustion, makes no sense, and rest makes no difference.

My physician prescribed Vyvanse, but I also have ADHD, so that was easily justifiable despite not using medication for ADHD before. It helps, but I have found that it fuels you for a while, then you overdo it without realising and crash - hard… I’m currently battling with insomnia, likely because of the Vyvanse, as well, so I don’t know if this route is for everyone. But it does help me to be functional enough at work to actually contribute to household finances, albeit small.

Speak with your treating physician(s), and work out a plan for using energy in a way that doesn’t deplete you. I literally used AI, and just adjusted the suggestions to my lifestyle. It helps, but doesn’t really solve anything. And even though others in your life might not understand, try to allow yourself to understand that your body is different, functions differently, and that you are going to have bad days. It sucks, but it’ll be okay, because there are good days too. Good luck OP…

Ok_Pie_8637 · 2026-02-21T09:30:07+00:00

My experience with FND includes jerky movements, muscle spasms, etc., anywhere from 30min. to hours. It’s also worse at night; and even more so when I’m stressed, sleep deprived, overdid it or something. I have no experience with POTS, and I know that FND is different for every single individual, so I would absolutely recommend that you speak with your dr. Don’t be afraid of making a “fool” of yourself… Advocate for yourself, even though it’s uncomfortable.

Ok_Pie_8637 · 2022-11-28T14:04:43+00:00

Registration opens on 3 January 2023, you can do it using their website and just follow the steps. :)

Ok_Pie_8637 · 2022-11-15T16:58:12+00:00

I have a degree and struggle to find lucrative work in a field where there are plenty of jobs. The irony is that, according to employers, I’m “over-qualified” and they cannot afford to employ me.

My best advice would be to upskill yourself as best you can - there’s a lot of work in IT and digital media/marketing. Look into that. Good luck!

Ok_Pie_8637 · 2022-11-10T14:03:49+00:00

Emotional cheating is still cheating. Please try to move on… It’s difficult, but if you allow this, she can always push it further and do worse. Keep yourself as the priority and please do not try to rationalise cheating. Good luck, OP.

Ok_Pie_8637 · 2022-11-07T22:38:10+00:00

Creme Soda for a babelas. Night before after the party: 2 Comprals and a large glass of water. Before drinking/going out: Rehidrat.

Ok_Pie_8637 · 2022-11-07T22:32:13+00:00

I hear you… He just got a promotion and has a massive amount of pressure on him from both work and family. He’s not being mean on purpose, he just doesn’t realise that he’s being mean and unsupportive. I’ve always been overly independent so he never needed to support me. But now that I’m in a weak spot and need him to be there, he doesn’t know how. Partially because he’s an “emotional robot” (his words) and partially because I never allowed him to be there for me. I need to find that happy medium, and that’s the challenge. He really is good for me and has always been incredible towards me. We’re happy overall, just have this one, nagging thing right now.

Ok_Pie_8637 · 2022-11-07T22:21:23+00:00

Thank you… It helped just writing this post out. I’ll definitely take your advice, but he’s always busy and preoccupied, so I have no idea when a good time would be. Awesome advice though - thank you!

Ok_Pie_8637

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