I have recently seen a pyschiatrist who told me that it's not been proven yet that FND is caused by what i've stated above,I don't understand why in one breath a neurologist can says it's caused by childhood trauma and anxiety but then say people who havnt suffered from this can also get FND,doesn't make sense to me I believe they just say this because they havn't got a clue what causes it.I seen a neurologist in December and I said to him that neurologist don't have a about FND and his reply was(There has to be more funding for it to do more research.)Does anyone else feel that FND is caused by something else other than what iv'e stated above.
FND NOT PROVEN YET TO BE LINKED TO TR... - Functional Neurol...
FND NOT PROVEN YET TO BE LINKED TO TRAUMA,ANXIETY,DEPRESSION.
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I don't think it is necessary caused by childhood trauma but it can be a pre-disposing factor, yet may not.
I think of it like the "river runeth over" (at least in my sons case) just lots of different factors filling up the river and the water running over the banks eventually, the neurons firing here there and everywhere which unbalances the CNS and causes different symptoms.
Self care is so important to get the balance back.
They don't know which comes first anxiety and depression or FND and it differs in so many people. I would think that anxiety before is more likely in trauma patients. Depression comes from having to deal with a different lifestyle and the loss of your previous one but mainly I believe, because more people are stressed.
Stressed due to the lack of medical help and rehabilitation offered/support from some loved ones.
Things are beginning to change and its up to us to educate the professionals that are still in the dark ages.
I was chatting to a friend today and I can see it in his eyes that he doesn't understand and I want him to just not give me that look or comment but I just have to breathe and except that everyone is going to have their opinion. I probably won't mention my sons fall to my friends this week but cause they will no doubt say "he was fine on holiday" and some random comment.
I was interested that you tagged ear conditions in this post since I think a lot of people with vestibular conditions are being given an unnecessary and, potentially, inaccurate FND label, simply because 'functional' forms part of the over arching vestibular disorders diagnostic Venn diagram.
Childhood trauma may be a trigger for some people but not for others so they had to remove the need for trauma from the criteria because other cases (where there was no trauma) were being missed. I believe they are now working to develop a specific category for people who did have childhood trauma which may help provided people get trauma informed treatment rather than psychiatric labels. Child hood trauma has also been recognised as a potential reason for some people developing migraine and other neurological conditions but it is still rather subjective since what is traumatic for some people is not for others and 'trauma growth' is a thing.
Where it becomes very confusing for patients is when, for example, someone's psychiatrist thinks trauma is involved but their neurologists don't. I remember someone in one of the FND groups asking 'why can't they agree?' so I pointed out that specialism bias exists and that the patient's opinion is probably more reliable than that of clinicians they've only met a couple of times. Freudian notions of 'conversion disorder' still float around, as do notions about 'hysteria' (yes, even now) which further complicates these issues and I will never understand why FND is in DSM.
It's because FND is what they used to call 'hysteria' then they called it 'Conversion disorder' that's why it's in the DSM.
It's still called 'hysteria', at least according to the latest hypothesis which was published last year and which I posted in this hub some time ago. But you're completely right and what I should have written was 'why it is still in DSM'. But we may never know because the people who slung DSM together signed non-disclosure agreements *sigh*.
It would be interesting to know how many people are actually told that they have a DSM dx when they are diagnosed with FND. I know drs are allowed to lie to us when giving this dx (see the 'limits to truth telling' stuff from Wessely et al ffi) so that we don't hate them but I do think they have a duty of candour to tell people that they've been given a DSM dx alongside their FND dx.
It would also be interesting to know how many people are told what their 'ruling in' signs are during the diagnostic process and what the actual misdiagnosis rates are, rather than the reported ones.
Hi 210272 I was never told what my ‘ruling in’ signs actually were? I know I banged my head in 2018 on concrete as I fell backwards and after that is when my symptoms started?
Far, far too many people with head injuries are being diagnosed with FND which feels very wrong to me. Especially since there's a lot of 'diagnostic overshadowing' going on so once people have a FND label doctors don't always bother to do due diligence about other conditions or symptoms. Since you weren't given your ruling in signs and have a clear recollection of what started your symptoms, I'd ask for a second opinion.
Do you know why you fell? Falls can be really traumatic for some people but don't seem to bother other people too much.
I was in my garden it is uneven in parts. I fell backwards, we have a pond and i banged the back of my head. I didn’t feel in too much pain at the time so I took painkillers and rested. But a few days after this is when my symptoms started for me and have yet to stop. Whenever I have appointments now or see a doctor and they say oh you have FND. I tell them I’ve not been told why and then I reel off my conditions that I have actually been diagnosed with. This sometimes works and they listen but sometimes it does not work. I feel dismissed from some especially neurology.
This is all too familiar to me. If you have enough energy it could be worth posting about your experiences (especially feeling dismissed by neurologists) in the feedback on Stone's site (neurosymptoms.org) since he needs to know that getting this diagnosis isn't always helpful to patients, especially when people have not been told why they've been given it. A couple of my contacts with rare conditions who were initially misdiagnosed with FND were told that questioning the FND dx (which they did, during their consultations) proves that it's the right diagnosis but I have yet to find any published/peer reviewed evidence that this is the case so it looks like more gaslighting and very, very poor clinical reasoning.
Thanks 210272 that was interesting to read I will take a screen shot of the email and when I’m feeling better I will do just that. Much appreciated 👍
You're very welcome 
I know giving feedback can feel like more work for patients with no guarantee that it will make any difference but it is a good - and, I believe - effective way of getting our voices heard, especially in the face of dismissal from neurologists. Stone put the feedback button there for a reason, after all
I find it concerning, that if future research should find biomarkers for FND, and so put the onus for treatment on neurologists, we might get an even worse deal than at present, as the neuros are the dismissive ones . Treatment teams ( unless in a dedicated clinic) are currently based in MH Trusts, who are at least engaging with FND patients, even if we would rather not be going there when our 'psychiatric status' is under a cloud not of our own making. .. but too murky for most neuros.
I hear you and your concerns are apt - why would we want to continue working with people who have previously been dismissive even if they do claim to want to 'walk' the therapeutic journey with us? (rhetorical question)
As we know, with most neurological conditions (common or rare) the biomarkers are likely to vary from person to person (genetic biomarkers, mitochondrial ditto, mast cell activation etc etc) so a personalised approach will be necessary (there's no 'one size fits all') and I'm not sure the NHS is totally ready for that, yet. However it will be less expensive than the blanket pharma/talk therapy/physio approach in the long run and I think the powers that be know that. FND (and the so called subtypes) involves a classic case of lumping rather than splitting and my neuro's rule of thumb is that medical knowledge always gets either lost or 'very murky' when that happens. Now that 'hysteria' has made a comeback she will only diagnose very specific types of FND and nearly always uses the caveat that the symptoms are of 'as yet unknown aetiology' and says that her patients usually do well provide they can access tailored treatments in a timely fashion, whilst recognising that such provision is hard to access via the NHS.
The problem I have with psychiatric labels is that they hang around like a bad smell in our notes and are not always either culturally or medically appropriate. Wealthy people can sometimes get shot of them, but health disparities persist even for someone like me who has 'white woman privilege' because the empire builders have far, far too much power and far, far too little direct accountability.
My GP listed it on my records as FND - Psycogenic symptoms. Since then, they have never taken me seriously. I feel like I'm being patted on the head 'there there, it's nothing, now on your way you silly woman' I avoid going to the GP these days.
I was actually told I should speak to a psychiatrist if I believed my symptoms were down to the prescribed drugs I was taking. Even when I backed it up with scientific papers, the 'rare' & 'uncommon' side effects became 'highly unlikely' & not possible after 2 weeks of discontinuation of the drug.
The last time I was involved in campaigning, This was not something Jon Stone would look into. We have challenged the effects of precribed drugs & links to 'FND' many times, even in the BMJ. But it's always skirted around, yet the information is out there. Side effects of some prescribed drugs CAN cause involuntary movements & they can be long term, even when off the drug.
I really feel for you and thanks for your campaigning work. An FND dx requires the neuro or GP to provide the 'rule in' signs for it so if they want you to take them/this diagnosis seriously then they need to say what these signs are. Akathisia (I hope my spelling is correct) is widely recognised now (Jill Nickens is a brilliant advocate) so I would speak to a psychiatrist who understands it, if you can, since the more data they have, the better their chances are of helping people avoid iatrogenic harm. Meanwhille, I know the FND Society turned down information from her prior to their last shindig in Italy so that's another 'very bad patient engagement' award they've won for themselves. Hmm.
Jill is brilliant with all she does to raise awareness. I'm not surprised at all they turned down information from her.
Their lack of openness regards prescribed drugs & involuntary movements is really crappy, I don't believe for one minute they don't know these drugs can be harmful to some people. How is anyone supposed to put trust in the people who choose to turn a blind eye and with hold important information from their patients, which would enable them to make an informed decision regards their treatment.
You have to ask why they are not interested in hearing about lived experience & the latest research.
As for Akathisia, they still more often than not don't recognise it, they will throw more drugs into the mix, often making the suffering even more torturous, then to top it all give them a list of 'disorders' to help them along with their suffering.
My 'software' problem was caused by the drugs I was taking and until a medical professional can explain how these drugs work on the brain, which as yet they don't know, I will stick to my own Dx. If they don't know how they affect the brain, then how can they 100% say it wasn't what I or anyone else was prescribed.
But in saying this, this is my story, what about those who weren't on anything?
Genectics........ what about genetics? guessing they haven't looked at it due to funding, best round up more patients so they can apply for funding.
Ooo! really need to get my anger in check, jumping off my soap box now. 🫢 Apologies.
PMSL at your posts I feel exactly the same as you but I can't express how I feel as good as you can.I remember reading something on here a while ago it said something like professor John Stone had jumped on the bandwagon and just changed the name to FND so that he would get the credits even though he still didn't really know what causes it.Wether this is true I don't know but I do remember reading it.calm down before you give yourself stress and bring on symptoms.(LOL JOKE)
I wouldn't be at all surprised if that were true, all about self gai n. More patients, more money. Keep them sick, it doesn't pay to make them well.
The FND symptoms list is going to be huge with all the patients they are shoving under FND umbrella. From childhood trauma, to a bang to the head, to Covid. Prescribed drugs as a cause not even considered.
The FND representatives have been approached time & time again regards prescribed drugs & withdrawal of those drugs causing involuntarymovements etc & never get a decent response.
A 20 minute appointment with someone you have never met & you walk out with a life changing dx that no one knows the cause of & they wonder why patients are angry or doubting.
My explanation for my involuntary movements completely dismissed as it was 'highly unlikely,' not ..... no definitely not, but highly unlikely, therefore, so a slim possibility right? Nope, that wouldn't fit the FND profile & would mean further investigation & looking at possible side effects of drugs that might be prescribed as a treatment.
"We don't know the cause, but know it's real, it's not a hardware problem it's a software problem in your brain" my neurologist.
My GP, everything is my 'FND-psycogenic symptoms' I'm not really in pain, but here take some amitriptyline it will help with your mood & sleep.... but but I didn't say anything about my mood or sleep 🤦♀️
I do believe that is response most people get with their Dx. 🤔
Keep calm & carry on she says as she puppet walks around the house with legs that have their own agenda. 😂
Can you please explain to me what a DSM dx is thanks
Hi I think it means Diagnostic & Statistical Mental Disorders but I could be wrong.
Thanks for your reply I googled it it's a book the medical profession use to diagnose mental illnesses.
Great glad you found it X
Do you think doctors have a duty of candour to tell people that they've been given a DSM dx alongside their FND dx? It really bothers me that the people who put it together signed non-disclosure agreements. One of the (many) opponents of DSM said he 'went bonkers' when he found out about those and I like people who go bonkers for reasons like that 
A lot of the blurb about FND states that it challenges the false divide between mental health and physical health but if they really wanted to challenge that divide it doesn't seem either sensible, wise or kind to include FND in DSM. Also using the term 'functional' to aid diagnostic acceptance (of FND) because it doesn't overtly point to a mental health disorder diagnosis is medical gaslighting 101 since we know FND is in DSM (well, some of us do).
With all this going on it's not surprising that people doubt the validity of the FND dx (especially if we haven't been told what our 'ruling in' signs are) and I'd like to see a paper called something like 'who's hoodwinking who?' since it's usually assumed that patients are trying to hoodwink doctors but it's starting to look like the opposite is true.
DSM biggest crock of 💩. Psychiatry & pharmaceutical companies labelling everything as a disorder, which of course they all need medicating. It is said every single person would fit into at least one category or another in the DSM, they have made so many things a disorder now.
Natural human responses turned into 'disorders' is just bloody wrong, but makes pharmaceutical companies very rich.
I hear you, Smich and I think there are a lot of other people out there who agree with you. My pet theory is that now that same sex attraction is no longer considered to be a mental health condition, there's a big vacuum in DSM which is being filled with all sorts of conditions (eg 'pelvic pain and fear of penetration') often without the knowledge or consent of us patients. And we may never know why given that the people who slung it together signed non-disclosure agreements.
Meanwhile - as I and others have said many times - using the term 'functional' to aid diagnostic acceptance of FND because it ('functional') doesn't overtly point to a mental health disorder diagnosis is medical gaslighting 101 because we know FND is in DSM. Apparently this term was chosen partly because it maps onto an understanding of modern imaging techniques, partly because it avoids a discussion about brain vs mind (eh??) and partly because it is thought to be 'easily used with patients'. Yeah, right.
Makes me mad.My first 'functional' dx was Functional dyspepsia by a gastroenterologist, because I had prolonged bouts of vomiting and pain in my gut.
What she didn't look at was the prescribed drug with a black box warning I was on & the fact it is known to cause gut issues.
Then when my GP wrote to the local shrink repeating my concerns regarding my involuntary movements & prescribed drugs, the shrink said 'oh I see she has 'functional dyspepsia' therefore I believe you are right to ho down the 'functional' route. He never even met or spoke to me.
Functional is such BS.
While I'm at it, PTS is enough, why do they have to label people with the 'disorder'. Post traumatic stress as it was known, is a human response to traumatic events, so why the 'disorder'.
I detest the whole disorder thing. I'm not 'disordered', I'm not well.
Sorry, I know some are reassured & OK with labels, but for me I have found it insulting, because they wouldn't listen and are not prepared to look a little further than their nose, for me its a barrier, like a 20 foot brick wall surrounding me, no one see's or hears me. Those who do see me, see a mental disorder they think talking therapies will help with.
I admit, I do have trauma, I am utterly traumatised, the medical profession traumatised me when they wouldn't listen & abandoned me when I wouldn't conform to their views & diagnosis.
But that's not why my body moves involuntary, that came well before they jumped on the FND rollercoaster.
I will be 6 years this year with my straight jacket label of FND.
I really don't want to offend anyone with my views, so I apologise if I have. These are my angry thoughts on my FND Dx. 🙏
Well said.
I really appreciate your posts, Smich and I also dislike the term 'disorder', in some instances, at least. I refer to PTSD (especially medically induced PTSD) as 'a sane response to an insane situation' and, as is so often the case, prevention is easier and cheaper than cure. One of the causes is experiences like yours and another is, or may be, medical gaslighting which is rife.
As far as I can tell, 'Functional' dyspepsia is still being referred to as 'functional' because they can't find any structural damage but we know that structural damage isn't necessary for migraine symptoms to present in patients so the 'function vs structure' debate should have been over years ago. And probably would have been if patients had been included in the discussions.
As far as I can tell, Stone rebranded from 'psychogenic' to 'functional' (having already rebranded from somatoform disorder although somatic symptom disorder is still in DSM, despite various laudable attempts to leave it out) to 'follow the science' which might be OK if 'functional' wasn't synonymous with 'hysteria'. But he does still say (of FND) 'none of the current terms is perfect' and apparently he now doubts there ever will be a perfect term. Some of the literature refers to psychiatrists and neurologists sharing 'angry' patients so maybe they need to find a way to treat people in a way that doesn't induce anger. I've been trying to wade through the recent publications about stigma and iatrogenic harm in FND but can't help thinking that action speaks louder than words and writing endless papers doesn't magically produce treatment centres that are easily accessible and don't cost a fortune for patients. Each time I see mention of the 'hidden curriculum' in these papers my BS antenna start twitching, just as they did when I read Stone's 'bare essentials' paper (which used to be freely available on his out of date click bait self help site, but isn't now) when I dubbed 'functional' to mean 'deliberately deceptive, dangerous, dumbing down double speak'.
Meanwhile the term 'functional' forms part of the overarching vestibular conditions/disorders diagnostic Venn diagram so the wobbly people are more vulnerable to this dx. Which does my head in more than the symptoms of MdDS or migraine ever did/do.
As does the 'territorial expansion' commentary from Kanaan which accompanied the FND Subtypes paper and is, of course, partly behind a paywall. The idea behind it seems to be to get all the 'dizzy/wobbly' people and people with cog fog to endorse the FND dx so that it becomes a dx that drs might be happy to give and patients might be happy to receive (note how they put drs' needs before those of patients - that's never a good look, eh?). Hmm, nope, not while people with a FND dx are still being treated with scorn in medical settings (if FND Portal is to be believed - I see no reason to doubt him) and experiencing trauma as a result. Or while there are still so many controversies about the subtypes. Or while there are still few, if any, economically viable treatments for people diagnosed with FND Or while so many people in this group feel the need to avoid their gps because of this 'straight jacket' label. That's brilliantly put - thank you. There are multiple other reasons why I think this looks like a window dressing exercise and that recent 'mind body' article in the Guardian is grinding my gears for similar reasons. Maybe one of their fine journalists might want to dig into the reasons why the creators of DSM signed non disclosure agreements and/or why 'hysteria' is one of the keywords in the latest FND hypothesis. That could be fun.
In better news, I have seen genetics mentioned re FND fairly recently and I am also interested in the overlap between autism and migraine and autism and FND. I also want to know why the bleep drs are allowed to lie to patients when giving the FND dx and when the FND Society are going to learn how to do grown up patient engagement, especially when it comes to finding a really simple way for us to report a misdiagnosis (or a very badly given diagnosis) of FND.
It's so refreshing to speak with people who understand where I am coming from. 'a sane response to an insane situation', I like that, I swear I was soooo gaslit my ass is still on fire all these years later. My trust in the medical profession is 0.
Thank you for your reply, greatly appreciated, it's a comfort knowing other people are kicking back at the FND dx and questioning it.
I contacted FND Hope regards the 'psycogenic' term on my records, I basically asked them to explain, the came back with ...
Unfortunately this is so common for our FND community.
Sometimes it may be easiest to look for providers who are already aware of FND, rather than trying to convince someone their understanding is wrong, but we do also understand the value of improving education on FND. I would just focus on ensuring you focus on getting helpful care for yourself.
Looking for providers already aware of FND😂
My providers are aware, that's how I got my Dx & they are all singing from the same home sheet...... psycogenic, hysteria, conversion, Somatic, software problem, so thats not helpful. 🤦♀️
Keep that BS antenna charged, it's needed to wade through the 💩, to get to the truth.
Genetics is fascinating, looking into mine has been really helpful, to the point I have been able to sort my B12 & folate levels without my GP, turns out it wasn't 'just me', I have a MTHFR Gene mutation. Also, found a lot of other useful & interesting info.
Thanks again for your feedback. 🙏
I have FND and also had childhood traumas and adult traumas. I have complex PTSD too. Also Borderline Personality disorder. My partners daughter has FND also. She is only 28. I am 52. Hers was caused by a fall and banged her head. Think it can be triggered by a number of things. I am newly diagnosed. Still trying to get my head round it. Think I had it for a 10 years plus. It's just got really bad as I am going through the dreaded menopause. I have for 11 years so far. I also heard you can get it with a bad COVID 19 case . I do a lot of research and reading about it. To try and understand it. Hope this helps a little. Have a good day Hun. Xx
Thanks very much for your reply,i'm also going through the menopause,i'm in a bad way just now with dizziness and numb legs.I still can't get my head around it after 9 years.I got patches for the menopause thank God they helped I don't get the night sweats now or feel as aggitatated.I have also been diagnosed with borderline personality disorder. Thanks again for your reply.TAKE CARE.
I believe Fnd in some cases is purely neurological. The problem is they don’t have a cure or sufficient knowledge about it. Im very disappointed about professionals that they are supposed to be experts about fnd. I have very disabling symptoms i ve lost so many years because of it but its more convenient to say to most patients all these happen because you are mentally ill. Its sad ..
Thanks for your reply I also have very disabling symptoms I go out once a week and that's even hard work,i've been in bed most of the day feeling very shaky and numb legs.I wish they could find out what causes FND and find a cure for it it's so depressing.
Brain injury, anesthesia, covid , covid vaccines these are some causes. I only got covid once ,last September and i developed Pots.
I don’t think they will find a cure they blame it on psychological trauma etc
I tried outpatient and it was just a waste of money. It was a cbt program with no physiotherapy no empathy nothing. Maybe in Usa some day they will discover a cure ,like this new drug they are testing at low doses Naltrexone.
I completely understand and feel how you feel 🙏🏻
Hi there, I have had some years to think about this myself. I would love to sit with a professional who claims to understand FND at some point to discuss this with them. Those I see in regards to this, often has no time to discuss. I understand your own thoughts and feelings.
I too, have been told my FND could have been caused by childhood trauma. I don’t doubt this at all. I did lived a great life from childhood to age 40 something. My life and health was great. Then life started spiralling out of control and this I believe would be the sort of trauma that is responsible for symptoms of FND at present. I have removed myself from a toxic relationship and away from those that can have a bad impact to my life. I’m settled with great surroundings, new life,looking always to improve my well-being, starting with understanding my condition and improving my life style.
Unfortunately, it’s been nearly 10years and my condition is becoming more debilitating affecting the entire body and organs. Seizures has caused me to fall and hit my head many, many times. It is my belief that my brain is not strong/fit enough to cope with certain and surely many traumas in life.
I think its a crock of crap frankly. There are people who suffered tremendous abuse and teauma in childhood who never got FND and lots who had a happy secure childhood and got FND.
Its a cop out because they dont know and rather than admit their ignorance they patient blame. I think its damaging and muddies the waters, preventing proper research and treatment. It adds to the stigma of FND.
Well said,one minute you can get FND if you bang your head or if you've had an operation,or because of covid,and also chilhood trauma,and then for no apparent reason at all iv'e never heard of so many different reasons being used as to why we have a disabling disability.As I said in another post my psychiatrist told me that it's not been proven yet that FND is not linked to mental health and the neurologist more or less said the same.Everybody is going to have their own opinion on what they believe which is fare enough but I can't believe in something that's not been proven yet.
theguardian.com/society/202... is a good article in the Guardian which talks about current understanding of FND.
Tried the link for this it wasn't working,i'm raging I was wanted to read it.
I've posted the same link about Guardian article on mind body connection. Its currently most recent new post. My link works.
The link worked man that was some amount of reading I will probably have to read it again to fully understand it,to much for my brain to cope with.Thanks for that.
That article is like the curate's egg. Good, in parts. However the author seems to be unaware that FND is in DSM and may also not be fully up to speed with the many controversies about it. Thanks for alerting me to it, Sparklingsunshine If I'd had more spoons I'd have submitted a letter about it but hey, I didn't.
Sorry - here it is again theguardian.com/society/202...
Hi I've got fnd and I got this due to trauma what someone done and also ptsd I've read up on how people get this one of them is trauma
please look up prof Jon Stone world renowned neurologist in FND. He explains that FND is halfway between neurology and psychiatry and it has been proven that FND comes from faulty signals in the brain
I believe they need more funding & they throw around the diagnosis for that reason.I believe my involuntary movements were caused by prescribed drugs and will always believe that.
Because of that I have been left to deal with it alone.
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