FND NOT PROVEN YET TO BE LINKED TO TRAUMA,ANXIETY,DEPRESSION.

[GrEeNbEeNs]

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.

[Lady4]

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.

[210272]

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.

[JHutton1994 in reply to 210272]

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.

[210272 in reply to JHutton1994]

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.

[Westie_1 in reply to 210272]

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?

[210272 in reply to Westie_1]

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.

[Westie_1 in reply to 210272]

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.

[210272 in reply to Westie_1]

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.

[Westie_1 in reply to 210272]

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 👍

[210272 in reply to Westie_1]

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

[Shimmyaway in reply to 210272]

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.

[210272 in reply to Shimmyaway]

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.

[GrEeNbEeNs]

Can you please explain to me what a DSM dx is thanks

[Westie_1 in reply to GrEeNbEeNs]

Hi I think it means Diagnostic & Statistical Mental Disorders but I could be wrong.

[GrEeNbEeNs in reply to Westie_1]

Thanks for your reply I googled it it's a book the medical profession use to diagnose mental illnesses.

[Westie_1 in reply to GrEeNbEeNs]

Great glad you found it X

[210272 in reply to GrEeNbEeNs]

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.

[Cockerpoos73]

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

[GrEeNbEeNs in reply to Cockerpoos73]

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.

[Cornelia35]

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 ..

[GrEeNbEeNs in reply to Cornelia35]

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.

[Cornelia35]

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 🙏🏻

[Starlightcircle]

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.

[Sparklingsunshine]

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.

[GrEeNbEeNs in reply to Sparklingsunshine]

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.

[Van604]

theguardian.com/society/202... is a good article in the Guardian which talks about current understanding of FND.

[GrEeNbEeNs in reply to Van604]

Tried the link for this it wasn't working,i'm raging I was wanted to read it.

[Sparklingsunshine in reply to GrEeNbEeNs]

I've posted the same link about Guardian article on mind body connection. Its currently most recent new post. My link works.

[GrEeNbEeNs in reply to Sparklingsunshine]

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.

[Van604 in reply to Van604]

Sorry - here it is again theguardian.com/society/202...