... Jon Stone's fairly recent YouTube video called 'Organic vs Functional - Perspectives from Neurology'? I found it baffling because he seems to have decided that the opposite of 'functional' is 'structural', which it isn't. And unless patients agree with him (and I don't think any were invited to the day's event, although I could be wrong, so it would be hard to say if they do) it could cause even more confusion about these terms.
This is just part of what I don't understand re FND and all the changes in terminology and descriptors that they use. One minute it's 'really clever doctors call it 'somatoform disorder'' but when we ask 'ok, so why the name change?' answer comes there none. Then we get told about the importance of the 'positive signs' when making the diagnosis yet five minutes later 'internal inconsistencies' are the hallmark of FND without much, if any, indication of what the positive signs are for these internal inconsistencies when measured vs healthy controls. Then we get told to think of our brains as computers but then there's a Guardian article about why our brains are not computers (rather obviously) so they switch to telling people to think of their brains as an orchestra although I am not clear about how doing so could contribute to symptom reduction. Just about everyone I've chatted to here and elsewhere doesn't think FND is a mental health disorder yet it's in DSM so it's all very confusing and I'm not surprised that I hear from people with a FND dx who report feeling confused, abandoned and hoodwinked. Using the term 'functional' to aid diagnostic acceptance because it doesn't overtly point to a mental health disorder dx looks like a prime example of medical gaslighting and none of us need that in our lives.
Plus - and this is heartbreaking - I hear that p/w a FND dx are still experiencing abuse in health care systems which is as wrong as wrong can be. FND Portal has reported that p/w this dx have experienced 'scorn' from doctors and have trauma as a result and drs have reported feeling 'devastated' when given this dx. In the UK there was a diagnosis detectives program and an ex military guy with fairly obvious PTSD (physical and emotional) and blackouts from too much alcohol said that FND 'is the diagnosis I was dreading' before the PR people got to him and he changed his story.
Clearly there are many people who have benefitted from a FND diagnosis but there are still too many negative experiences (including the 'dustbin diagnoses') that can accrue from it for me to believe it is a good plan for the powers that be to go ahead with their 'territorial expansion' stuff.
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It is very confusing. If we scale it all back.. we have to accept that our brain rewires our software to cope with mental overload. Even if we ourselves attest to having no overloading.
It seems counterproductive for our brain to cause us physical suffering to cope with a mental overload.
If one was to experience extreme stress.. I imagine one’s system could react.. like that moment fear kicks in and you can’t scream or run.. Or something so traumatic a person disassociates..
Yet, most of us have no such event..
If mental wellbeing is fine.. why can one not recover the lost functions?
I have watched videos where a person has a very unnatural walk.. but can walk backwards normally.. or with distractions a person stops shaking.. that doesn’t represent everyone.
A large FND umbrella gives Neurologists a free pass! They actually diagnosed me without examination over the phone. What positive sign justified the diagnosis?
My weakness has progressed and my mobility reduced further..
I was finally examined 2 years after onset.. clinical weakness in upper and lower limbs.. the lower being graded a 3. Neuromuscular disease suspected but nothing confirmed as ongoing.
I just think that maybe a new era of organic disease is upon us.
We share our symptoms in the hope of a cure.. no one wants to waste their life suffering.. yet not much help is offered if you don’t have a recognised disease.
Let's not be so negative about the 'experts' on this. They are feeling their way through a condition which we are all trying to understand and sure they are doing the best they can.
I have enrolled on the course from FNDcourage recently suggested in a thread here, and looking through the site it looks like she knows her stuff and I am having hope that it will help
What would help make the diagnosis more credible in my opinion (if it is in fact credible), is for doctors making the diagnosis to provide a full report on how they have worked through all relevant differentials pertaining to the symptoms the patient reported and presented - details on tests run, physical tests done, which criteria they used for their diagnosis, exactly what the 'positive' signs were and most importantly which elements of a patient's medical history they deemed relevant to support their assumption of a psychogenic cause. It is not enough for GPs to receive a letter with the name of a diagnosis, a few shorthand tests done, that ifte don't actually mean much to doctors from other disciplines and that way patients and medics who are not neurologists can all get a much better understanding of what this entity is supposed to be.
It is the constant moving of the goal posts when faced with a credible challenge that I find the most galling, dispiriting and disingenuous. When the software analogy is challenged with MRI evidence of structural changes, the 'experts', who would have died on the hill of 'nothing physical to see here', suddenly tell us to accept neural plascitity. But that's not a new idea, so why is it suddenly wheeled out to still keep us in a mental health category? Then that challenge is met with 'well, this dividing medicine into physical and mental health isn't very helpful, so you don't need to worry about the box it is in. But we do because we shouldn't just stop searching for answers. And 'functional' is simply a way to avoid having a conversation with us, leaving us believing anything other than the harsh truth that when a doctor hears the term 'functional' they're hearing psychosomatic. And it is no answer to say 'but oh don't be so negative about the experts, they're just feeling their way.' That would be ok if they admitted they were feeling their way. But they don't. These current experts are being held in the same vaulted status as Freud and that didn't and won't do us any favours. And courses like FND Courage simply keep the mental health causation alive and kicking. What other group with a severe disability gets told to simply think happy thoughts to get better. Yes, positive thinking can help with the stress and depression that comes with any chronic disability but it isn't a cure. And it isn't the cause. And on what basis are we to dismiss the NORD Rare Disorder classification? Is transparency really too much to ask for.
You couldn't of said it any better. The trauma we received from everyone who isn't us isn't fair by any means. That why I dread seeking care til this day and felt like it's a waste of time to prove to others I'm not crazy or I have all control of this.
I think that there is a lot to be discovered and figured out about FND and we know very little about the brain and body in general. It is our responsibility to do the best we can as patients to sift through all the information and walk away with as much knowledge as we can about this illness. The practice of medicine as they say and the mysteries of the body will continue to baffle us. I do think that past or present psychological or physical trauma to the brain and/or body can make us more prone to illnesses like FND that can be rather complex because it involves the gray area between physiology and psychology. I think maybe breaking it down even further looking at it from a very simplistic approach, FND is just the movement of energy in the body not flowing in a normal fashion disrupting processes which creates many somatic symptoms that baffle the healthcare industry, patients and caregivers.
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