Please or to access all these features

Add post

Watch this thread

Save thread

Start a new thread

Flip thread

Hide thread

My feed

Active Unanswered threads

Getting started FAQ's

Unanswered threads Acronyms Talk guidelines

Hide shortcut buttons

Talk

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Flip

1 2 3 4

Original poster

Likely going to be told I have Functional Neurological Disorder

81 replies

Tilly915 · 25/01/2025 19:51

Sorry for posting this in 2 different places. I just really need support, from somewhere, as I feel like I'm going mad and can't stop sobbing. My stoicism seems to have abandoned me.

I've had weird symptoms for weeks now. Limb weakness, leg not functioning, eye flickering, wet myself in sleep, limb shaking, tinnitus, pins and needles, pain. All on rhs. Had MRI of brain and spine which ruled out anything structural, which I'm glad about. Haven't had follow up with neuro yet but I'm fairly certain he will say it's functional. It came on when I was very, very stressed. I guess I'm just pissed off that this is happening. I feel like my body is falling apart and I've no idea why. I'm so glad my MRI is clear, but equally I don't want to be given a diagnosis of something that's so stigmatised and just want my symptoms to go away. I feel so low, and just need to vent. Feeling really, really hopeless.

OP posts:

AtomicRuby · 26/01/2025 03:36

myplace · 25/01/2025 21:54

@Octavia64 re the software hardware issue, as I understand sometimes the software doesn’t accept the hardware has been fixed.

I have fibro which has similar issues. After any injury, I took ages to recover if at all. My brain was trapped in a trauma response, over reactive, over defensive, and convinced I needed to stay still and stop doing all the damaging things.

A physio taught me how to move the various areas incrementally, stopping before anything hurt, building up the movement, until my brain accepted that it was a safe movement. When I’m tired and stressed my brain throws up an error code out of a selection it’s had good practice with, and sirens go off about the pain in my left foot/right rib/small of my back etc. There’s no damage there anymore. Just the memory of pain that my brain uses to tell me to slow down and look after myself better.

At least, that’s how I understand it.

This has been the way my FND is being managed. It is helping give me my life back. It hasn't cured me completely and I still am somewhat disabled by it though I'm able to do more and more.

mine presents as dystonia, ever since an adverse reaction to an antipsychotic I was put on 20 years ago. Physio has been a lifeline and also joining FND groups online.

itsgettingweird · 26/01/2025 08:07

Tilly. My ds has other symptoms as well. He has completely lost feeling in one limb, has a tremor, has weird feelings etc. he is also autistic so does live with some constant underlying level of hyper awareness.

Don't accept FND if you think it's something else and fight.

But if it turns out it is FND after ruling out other things it's still real and please don't think people will dismiss the symptoms and your suffering.

Nothanks17 · 26/01/2025 08:11

Don't accept anyone telling you anything about FND being psychological etc. and to just relax. Psychological therapy is one part of it in the sense of treatment, but I am highlighting the danger of people suggesting 'imagination'.

There is not enough research or understanding, however, please do not hide your condition if you are diagnosed. There are so many people being diagnosed with FND now and there are groups to join on social media and charities such as FND hope. I describe it to my mum who has FND as a problem with the wires sending the signals, not the hardwire. The messages between the nerves and the brain are all wrong.

Your symptoms are real. You are experiencing this, and don't back down. People who tell you are lucky it is functional do not help either. It certainly doesn't feel lucky to not be in control.

You are doing great and know there is help out there. Push for neuro specific therapy if you are diagnosed, and not standard community or inpatient rehab, the understanding and quality of treatment in my region has an outstanding difference between the two due to knowledge and training.

I have seen people recover, and adjust their lifestyle to ensure they do not trigger symptoms. My mum is not yet one of those people :(

Snippit · 26/01/2025 11:18

pinck · 26/01/2025 00:49

Wow, so first of all, I’m sorry you’re dealing with all of this. I completely understand the frustration of wanting answers but feeling terrified of what those answers might be. The waiting game, not knowing what’s going on but feeling like something’s off, is so draining. I really get what you mean about your body feeling like it’s falling apart and not knowing why. It’s like your own body is betraying you, and there’s nothing you can do to stop it. That’s an incredibly overwhelming place to be.

Honestly, it’s a relief that your MRI came back clear because I know how terrifying it can be to think something major might be wrong structurally. But at the same time, not having that definitive answer just leaves you in limbo, which is tough. I can’t even imagine how frustrating it must be to think your symptoms might be labeled as “functional” just because they started when you were stressed. It’s like, you’re already dealing with all these symptoms, and then you have to contend with that added layer of doubt, asking yourself, “Am I crazy?” It’s so much to carry.

I totally get where you’re coming from though. I was diagnosed with MS three years ago, and while it’s a diagnosis nobody wants, it was kind of a relief to finally have an explanation after years of random, weird symptoms that no one could figure out. Even so, it was a rollercoaster of emotions. I had my first major relapse (which I tried to ignore and wrote off as stress) and got over it in about three months. But then, about six months later, I became permanently legally blind in left eye, which was not supposed to happen—because apparently most people with optic neuritis get most of their vision back. But, well, I guess I’m just super unlucky.

And now, on top of all that, I’m going through withdrawal from high-dose IV steroids as my most ecent MRI showed a few new lesions so right now I’m in this weird place where I just want to pass out from exhaustion and punch someone in frustration but even with everything going on, I try to remind myself that life goes on. Some days are harder than others, but feeling low or hopeless in the moment doesn’t mean it’ll always be like this.

As an M.S sufferer myself I also had an optical neuritis episode, SOOO bloody painful, thankfully, eventually, I got a good amount of my sight back.

Currently been diagnosed with Chronic Kidney Disease, something else M.S has caused, fuckety fuck. The fatigue and pain is an everyday occurrence currently, my neurologist doesn’t believe in IV steroids for relapse recovery, thanks a lot you wanker!

The relapses are shite, I struggle along with a lovely husband that’s there for me. Currently stressed due to 29 year old daughter diagnosed with FND, I have mentioned it on this thread. Life deals lemons, so we have to make lemonade sometimes, but it’s a fucking hard existence grieving for a life you once had.

My daughter has a chance hopefully of recovery with therapies that are lined up, I really do hope so. This disease is nibbling away at me, and I lose a little bit more of me each year. My gorgeous hubby has said if I ever need a kidney transplant he’s up for giving me one of his, if it’s a match. I’m hoping it won’t come to that.

Your post encapsulated just how WE M.S sufferers feel, it’s such a vile disease and very misunderstood by many people.

olympicsrock · 26/01/2025 11:25

Tilly915 · 25/01/2025 20:16

It almost feels like you intentionally wrote this to minimise how unwell I am. I've done nothing but self care the past few weeks, but my symptoms haven't just disappeared. It's been nearly 25 weeks. Half a year. I can't seem to just relax it away sadly.

Show quote history

I think you have jumped down the throat of someone trying to be kind and positive. It is better to have a diagnosis like FND with more hope that you have the power to help yourself in the long term with lifestyle etc and that things are more likely to improve than with a chronic degenerative neurological condition.

Jabtastic · 26/01/2025 11:47

A hug to all of you experiencing neurological illnesses. They are tough and unpredictable.

I try to follow Swank / Overcoming MS type diets where possible and when I combine these with intermittent fasting it helps my symptoms a lot. Stress is an issue with neurological issues for me so I try my best to minimise stress to stay well. OP it's really worth experimenting with dietary changes like cutting out gluten and/ or dairy to see if they help. They can have a really profound effect.

Flip

1 2 3 4

Swipe left for the next trending thread