Does anyone have FND?

[RealLifeClanger]

My GP thinks I might have it. I've been referred to Neurology but unfortunately it's a very long wait, possibly around 9 months to a year. Does anyone have any tips for managing it in the meantime? The attacks come on quite suddenly sometimes and can be really unpleasant with the neurological symptoms and loss of function etc.

yes.

agree unpleasant.

trick is to try to work out what triggers it (easier said than done). Then avoid triggers.

mine gets bad with infections and walking too much (I have a severely injured foot).

@Octavia64 thank you, that sounds difficult with a foot injury as well.

I've recently had a uti that needed 2 weeks of antibiotics so that might well explain the uptick in symptoms. Had my flu jab the other day as well.

I know stress can trigger it but that's difficult to manage in itself. I'll have to work more on that.

Yes, infections, too much rest or sleep, low barometric pressure. I have to try to blast through an attack through the pain barrier then it seems to improve later in the day. It's bad in the morning too but I have fibromyalgia and hEDS as well as autoimmune conditions so it's tough!

@CherryRipe1 yes, fibromyalgia has been mentioned as well so I also have a rheumatology referral. I have symptoms of both but the attacks I experience don't fit with fibro.

I've just read a few other posts on FND and I'm a now bit concerned about it being something that isn't really taken seriously, in the same way as fibromyalgia.

It is a diagnosis that covers a lot of ground.

i have a shitload of other stuff wrong with me as well (was in an accident and use a wheelchair).

think of it as a brain software problem. I tend to get it when I am otherwise ill (infections and the like) which causes scrambling of speech and some movement problems.

every software problem is different. Think about it as “something is wrong with your computer but it is software” and the “fix” is different from each person

@RealLifeClanger Yes they can cross over it seems and seem to be "dump" diagnoses I'm afraid & get ignored. There are 100s of symptoms for both I think Covid and the vaccine exacerbated mine a lot. As @Octavia64says, different fixes for them but I've had to try to learn to live with mine. It's scary when your legs are numb and don't function.

@CherryRipe1 yes, I have had a bit of a time of it over the last 10 years with a lot of infections, a lot of antibiotics and then covid/vaccine etc. Then around 3 years ago I had a virus (not sure what it was) that seemed to last for much longer than usual and haven't really felt fully back to normal since. I had some fibromyalgia symptoms and nerve pain before the weird virus but the neurological 'attacks' came after.

@Octavia64 that's a helpful way to look at it, although I think I've had a software problem for most of my life! I have a lot of other conditions, none of them are particularly serious (I hope) but still difficult and frustrating.

This might help you. A Summary of Functional Neurological Disorder
Functional Neurological Disorder (FND) is a condition that arises from a problem with how the brain and nervous system sends and receives signals, rather than an structurally identified disease process.
Symptoms appear similar to neurological conditions such as Multiple Sclerosis, Parkinson's disease and epilepsy and result in similar levels of disability and distress. However, the underlying cause is different.
Diagnostic Symptoms may include:

• Movement and other motor symptoms such as tremors,
• limb weakness, episodes of paralysis, altered gait, muscle spasms, fixed joints or tics.
• Sensory symptoms such as altered sensation or visual disturbances.
• Functional speech and communication difficulties
• Facial/body spasms
• Dystonia/Myoclonus
• Sensory issues, reduced sensation, visual disturbance
• Drop Attacks
• Seizures (dissociative) which resemble those associated with epilepsy or syncope.

Other symptoms may co-exist that are associated with the nervous system: Pain, fatigue, memory and other cognitive symptoms, or mental health difficulties. Mechanisms and aetiology of FND Recent neuroscientific research identifies FND as a 'brain network disorder'. Functional imaging (fMRI) brain scans, (as opposed to ‘structural’ scans routinely done as clinical investigations) show patients with FND to experience disruptions to many key brain areas including the amygdala, insular cortex, and temporo parietal junction. FND affects brain areas that are responsible for multiple functions such as motor movement, pain processing, emotional processing and self agency. Dualistic models that separate illness into categories of either physical or psychological require review. FND presents a paradigm shift in our understanding of how the brain works because it lies between the fault lines of mind and body, neurology and neuro psychiatry, and for this reason FND is best viewed within the framework of the biopsychosocial model. FND – An error of predictive processing Modern neuroscience views the brain as a ‘predictive’ organ, and recent evidence supports the view that FND is a result of problems with the pre-conscious phases of motor planning, disrupted by the brain’s abnormal involuntary predictions about movement. These take place at very low levels of the nervous system beneath conscious awareness. The brain relies on predictions of what it will be able to see and do based on previous internal models, prioritising them over incoming sensory input. For example, in the movement disorder subtype of FND this results in a mismatch between instructions from the brain to move a limb and the sensory feedback from doing so. In this view FND is now conceived as an 'error of predictive processing' caused by a disruption of the functioning of brain networks. In FND tremor an area of the brain called the right temporoparietal cortex is underactive. This is an important ‘node’ in a network within the brain that helps us to know that we are in control of our actions. This is a network for ‘self-agency’. that is disrupted in FND. An FND patient will appear to be using their voluntary movements, but actually what the persons experiences is true the movements are happening without the person being in control of the movement. FND is the opposite of Phantom Limb Syndrome You may have heard of Phantom Limb Syndrome or Phantom Limb Pain. This is where someone undergoes amputation of a limb but they feel like its still there. FND research suggests something similar may be happening. But instead of a strong prediction that the leg IS there, for various reasons the brain develops a prediction that the leg is NOT there. Again, the problem is that, although the brain is getting messages that the leg is there, the prediction that it ISNT there is too strong. The brain doesn’t update, just like in Phantom Limb, and so the person experiences the prediction, not the sensation. Why would a brain decide to predict that a limb is NOT there? For lots of reasons

• because its painful and its trying to get rid of the sensation
• because there has been a migraine or other strange neurological symptom which has sent the brain in to fight or flight mode and its trying to shut down that part of the body
• because its been used to shutting down parts of the body before in response to threatening events.

How psychological is FND? FND can be triggered by physical trauma such as an accident or head injury, and can also be triggered by psychological trauma. Having a pre-existing neurological condition is also a strong risk factor for developing FND. In addition to this there are a proportion of patients who have no physical or psychological trauma suggesting genetic risk factors. Psychological stress and trauma are risk factors for triggering FND but not ‘necessary or sufficient’ to cause the disorder. Like most illnesses the reasons why patients may develop FND are complex and heterogeneous. “Functional Neurological Disorder is often explained to patients as a psychological reaction due to past trauma, or as symptoms due to stress. These explanations usually fail and result in patients feeling alienated, stigmatised and not believed. The main reason for the failure of such explanations is that they take a potential risk factor and turn it into the cause of the problem.” Professor Mark Edwards, Professor of Neurology, Kings College, London. "Psychological trauma is to FND what smoking is to stroke, a risk factor but not the cause." – Professor Jon Stone, Consultant Neurologist and Honorary Senior Lecturer at the dept. of ClinicalNeurosciences, University of Edinburgh

How is a positive diagnosis of FND made?
Patients with a suspected diagnosis should be referred to a Neurologist for a specialist assessment. A diagnosis of FND should be based on positive clinical features.
Patients with FND often have many complex symptoms, so it is important to ask about motor and sensory symptoms, fatigue, pain, sleep disturbance, memory and dissociative symptoms. FND often co-occurs with other conditions, most commonly neurological illnesses, and under these circumstances may be referred to as ‘functional overlay’.
FND causes disability and impaired quality of life just as patients with other neuro conditions. Some have complete recovery whilst others long term problems. Early intervention through multi disciplinary treatments and therapies is key to chances for optimistic recovery outcomes.
FND needs individualised multidisciplinary treatment to support all contributing factors: Education, physical + psychological rehabilitation all can have a role. Psychological therapy can be the main treatment for some people with FND especially seizures. Have a look at www.neurosymptoms.org.

@FMLpassthegin thanks, is that from a website? If you wouldn't mind posting the link that would be great.

Yes, my daughter is diagnosed with FND.

She was given a diagnosis, a website address and sent on her way. Medical professionals now seem to see it as a handy excuse to blame every single thing on “anxiety”

Her symptoms are worse when she’s tired, ill (cold, etc) or stressed so she’s really had to learn to listen to her body and not over do things.

Self care is key.
Boring stuff like pacing and good sleep habits.

Treat yourself like a baby, don’t get over excited, overtired, overly hungry…

Do calming and stress relieving activities as a normal routine- mindfulness, baths, candles, yoga whatever. The idea is to build a calm bank/credit instead of a stress debt.

Pacing is not having an easy day to recover from overdoing it. Don’t overdo it!

My daughter has found these sites helpful

https://fndhope.org
https://www.fndaction.org.uk

Pacing is not having an easy day to recover from overdoing it. Don’t overdo it!

Yes! Totally agree.

Don’t over do it in the first place as she’ll have a really tough time with her symptoms which last for weeks sometimes. She refers to spoons and has really had to learn how many spoons she has and not use any more than she has

@PrizedPickledPopcorn thats good advice, thank you.

@Springersrock I've heard about spoon theory, not sure how to implement it as not sure how you're supposed to know how many spoons you have! Will have to do some more research.

I have ME not FND, but yeah unfortunately that's the problem with the spoons, you don't really know how many there are until they run out.

Over time you learn to count them and work out how many are (probably) left.

This week I'm in bed having got that count spectacularly wrong 🤦

@MsWilmottsGhost sorry to hear you're laid up in bed. I'm much the same this week after my flu jab, although managing to potter about a bit again this evening.

Who diagnoses ME just out of interest? I have wondered about that as well. There's so many symptoms of FND/fibro/ME and so many cross over.

Yes I've been diagnosed with it but I don't have a clue what the symptoms are, or what treatment helps temporarily. The consultant sent a letter out to my GP with me copied in, so it was a bit iof a shock to find this out as they hadn'tmentioned anything to me when in the room. I also have Fibromyalgia and Lupus so no idea what is causing me problems at any given time.

@LittleGreenDragons how nice of them! I've been reading the FND Action website and the neurosymptoms website to familiarise myself with it. It's a lot to take in though.

Spoons is just an illustrative device to demonstrate that we have less available energy than other people. I get the image, others find it totally confusing because it’s a complicated way of saying everyday life is exhausting!

I think the only real take always from spoons are-
basic tasks like getting out of bed use a significant chunk of energy;
when we run out of energy it takes us a long time to recharge.

People related to washing their hair or showering when they’ve had the flu, I think. Most people have felt washed out and suddenly aware of the energy cost of holding your hands above your head to wash. Though maybe more so from hangovers than flu 😅

I was dx with FND years ago after various tests ruled out MS.
Main symptoms for me are ataxia and slurred speech. It started after a virus and never went away. If I get over tired, or am coming down with a cold, or any other illness the first thing to go is my balance, along with horrific level of exhaustion. I also can't see films at the cinema in 3D and sometimes strip lighting also causes me problems.

I've managed/ignored it for nearly 15 years but in the last year developed constant myoclonic jerks at night so recently saw a neuro again. A basic blood test showed I have been B12 deficient for years and having been on B12 since June my myoclonic jerks have improved a lot. The ataxic episodes continue.

Managing means DIY... doctors are still inclined to be dismissive... it's a bit of a wastebin diagnosis as far as most are concerned (not all, to be fair) ...a bit 'if we can't see it on a scan or blood test it must be all in your head'

Pacing... not really . I've been living with it for over 15 years now and while at it's worst I was unable to walk (couldn't balance!) I have found that fresh air, exercise, reasonably healthy eating and focusing on getting through the day, is better for me mentally than consciously pacing myself. When I'm ill, ok I rest. If my balance goes, then a stick, or if really necessary, the wheelchair, comes out.. sometimes long days out I need to sit for a while but I genuinely feel that cracking on with life is important... and also the doctors don't treat me like a nutter (which sadly I have experienced!)
But that's my approach 😆..everyone is different. There have been points where I thought I'd be disabled for life but I'm a stubborn sod!