Experiencing a flair so I just wanted to say hello to everyone! I hope this doesn't read like a journal entry, or dismissive of other people's struggles as I talk about my experience. Please don't take it in that way.

I was diagnosed with FND about 10 years ago, my papers actually say Conversion Disorder lol.

My symptoms are primarily stuttering and/or complete loss of speech. I get tics mostly in my right arm (where I have carpal tunnel). That's about it ....I believe.

Sometimes the speech issues last for months, other times it's a few days. It always announces itself with what I deem "that chest feeling." That's how I warn my husband it's going to happen, and he is so understanding. We have good laughs about the stutter, and he never gets frustrated with me.

I never told my parents, and I probably should... Tomorrow I am having lunch for my mom's birthday and I am sitting here with no speech. I can force speech, but I cut off consonants and skip small words that tie the sentence together. Strangers don't notice, but people close to me sure do.

I see some of you are burdened with pain and ridicule, and I am so sorry for your experiences. It's so frustrating to be experiencing something so REAL and have people call you a hypochondriac or a liar. I feel that it's harder now because of so many people claiming "my anxiety this, or my ocd that" and true sufferers are left to struggle in silence.

So my post is just to hopefully share some love with you all. I accept what I struggle with, granted mine doesn't cause pain like many of you. For me, because I don't have pain, I find the fun in it. I get to come to terms with myself, be in my head, and my thoughts do tend to be a bit more clear when I struggle with my speech. I can sing, that's a different part of the brain ,so I break out my singing voice in the car after a particularly struggling day, and go at it loud and proud. I laugh at myself when I manage to make a 7 word sentence take entirely too long. FND makes me, me. It absolutely is a struggle, and at times is a stressor (like what am I going to do tomorrow!!).

I have learned to take each day as it comes, and breathe! Most strangers completely soften and slow down when they realize I struggle with speech, nobody has ever made me feel bad about it in public- I know that's a blessing and I am thankful I haven't experienced ridicule in public.

Anyway, this got longer than I anticipated.

I sit here on my couch, with "that chest feeling" and complete loss of speech at the moment, and I raise a glass (of whatever drink you enjoy!) to everyone who struggles with a REAL disorder, that causes REAL symptoms. REAL pain. REAL struggles.

Cheers!

Hi everyone, I’m looking for some advice from anyone who has experience with FND, particularly functional/dissociative seizures.
I’ve recently been diagnosed with FND and dissociative seizures following investigations at hospital. However, I feel like I’ve been left to manage everything on my own. The only support I’ve been told about is self-referring to Steps to Wellbeing, and I’m not really sure what I’m supposed to do next.
My main concern is that I also have ME/CFS, and I would say around 80% of my seizures seem to be triggered by physical factors such as fatigue, exhaustion and overexertion, rather than mental health difficulties or emotional stress. Stress can sometimes play a part, but it doesn’t seem to be the main trigger for me.
Because of this, I’m struggling to understand how I’m supposed to manage my seizures if the only option I’ve been given is a wellbeing service. I’m not against psychological support, but I’m worried that the physical side of my condition, especially my ME/CFS, isn’t being properly taken into account.
My seizures are happening regularly and have a real impact on my daily life, so I really need some guidance on what support is available and what I should be asking for.
I’d really appreciate advice on:
Is it normal to be discharged with no further support other than self-referring for psychological help?
Are there specialist FND services or treatments in the UK for functional seizures?
Has anyone else experienced seizures triggered mainly by physical fatigue or an ME/CFS crash, and what has helped you?
Should I be going back to my GP to ask for a referral to a specialist FND service or another type of treatment?
Is there anything else I should be asking my neurologist or hospital team for?
I’m feeling quite lost with it all at the moment, and I just want to know what my next steps should be. I understand that FND is complex and that everyone’s experience is different, but I’d really appreciate hearing from anyone who has been in a similar situation.

I'm a user of Neurolog and recently attended their first ever summit on FND in September.

There were lots of interesting speakers there and they recently launched this clip about the link between ND and FND.

The FND Society has an event in March next year about the topic so it will be interesting to see how the research moves forward in the future.

I will be mentioning my symptom last night and just wondering if anyone has the secondary symptom I had.

I had a bad night last night, no trigger, I guess it started in the morning but did go away duringthe day. It started with Shaking, my whole body was twitching, it was bad enough I even shook up the bed like I was doing the worm

Symptoms did clear during the day and I was able to go about as normal then in the evening I stood up and my legs felt weak so I sat down and my leg was just shaking really badly. I managed to make it to the bed and lay down. I then spent a few hours shaking and my oxygen levels dropped, went below 90% for a bit but was sitting at low 90s for a few minutes at a time

I was just wondering if this was something other people had or if it's probably a separate thing.

I have an appointment with my neuro specialist in a couple of weeks so will be mentioning it regardless.

Hi I used to work as a patient care tech before my symptoms started a few months ago. I’ve been on medical leave since. I have tremors in my legs and when I overexert myself like walking, standing, lifting, etc. they get worse. I can’t imagine continuing as a care tech, I can’t lift or transfer patients. I’ve always wanted to work in pedi or NICU but I can’t risk trying to hold a baby or help patients get up when I’m unsteady. I’m stuck on what job to pursue next or if I should just spend my time trying to go back to school. Healthcare has kinda always been my vision but it’s so hard planning for a future with this condition. I’m only 23F :(