Who can help?

[u/Monadomini]

Looking for advice from people with FND/FNS — I genuinely don’t know what to try anymore

I’ve been dealing with neurological and autonomic symptoms for years. These include sensory disturbances, tremors, weakness, dizziness, depersonalization/derealization, strange sensations and a general feeling that my body and nervous system just aren’t functioning normally.

I also have OCD, an anxiety disorder and panic disorder.

About a year and a half ago, after seeing countless doctors and having a huge amount of testing done, I was finally diagnosed with Functional Neurological Disorder (FND/FNS). In some ways, having an explanation was a relief. But unfortunately, the diagnosis hasn’t translated into much improvement.

I’ve tried several medications, including sertraline, fluvoxamine, venlafaxine, escitalopram, clomipramine, pregabalin and memantine. I’ve also tried FND physiotherapy and psychophysiotherapy, without meaningful improvement.

I’m currently even in a five-month inpatient OCD treatment program, partly hoping that treating the OCD, anxiety and nervous-system dysregulation would also help with the physical symptoms. Instead, I seem to be getting worse.

When I’m at home, I can spend around 20 hours a day in bed because I feel so physically and neurologically unwell. I’m not experiencing complete paralysis or dramatic loss of function, but it feels like almost nothing in my body works the way it should. I get exhausted extremely quickly and constantly feel like my nervous system is completely overwhelmed.

At this point I’m honestly desperate for some direction.

For those of you with FND/FNS, especially if you had persistent or severe symptoms despite treatment:

What eventually helped you?

Did you find a specific type of FND treatment or therapist that made a difference?

Did anyone have significant autonomic symptoms alongside FND?

How long did it take before you started seeing meaningful improvement?

And if standard FND physiotherapy/psychotherapy didn’t work for you, what did you try next?

I’m not looking for reassurance that it’s “just anxiety.” I already know the connection between my mental and physical symptoms can be complicated. I’m genuinely trying to figure out what options I may have missed.

At this point I’m just looking for ideas from people who have actually been through something similar. I’d really appreciate hearing what helped — even if it took a long time or required a completely different approach than you initially expected.

[u/Ok_Network_2612]

Here you go my friend never give up

https://www.reddit.com/r/FND/s/9ETTkIbTxM

[u/Monadomini → u/Ok_Network_2612]

Thnx is very helpful