Seizures, paralysis, brain fog. These are all symptoms of functional neurological disorder (FND). It is one of the most common reasons for a visit to a neurologist, but most people haven’t even heard of it. Erin Mansell speaks to those with FND about their experience.
It all started with pain and stiffness in her legs. Jayne had a feeling something was wrong, but didn’t seek medical attention until one morning when she woke up and couldn’t move her legs.
The doctors ran numerous tests- MRIs, blood tests, CAT scans, and lumbar punctures. She also experienced excruciating pain in her eyes whenever she moved them, a condition known as optic neuritis, leading doctors to believe she had multiple sclerosis.
“It’s like having a hot poker in your eyeball. It’s horrendous,” Jayne said.
This has also affected her vision in her left eye, which is at about 60% of what it was. But Jayne Menzies, 51, who lives in Ashford, didn’t get her actual diagnosis until three and a half years later. That’s three and a half years of not knowing what was wrong. Three and a half years of wondering whether things would ever get better. Three and a half years of losing hope.
“It made me feel awful, like an imposter,” she said.
“I felt like they didn’t believe me and it was all in my head. And then I got angry because I thought ‘Why is this happening to me?’”
Eventually, it was a neurologist who phoned her up one day and told her she had functional neurological disorder.
An estimated 50,000 -100,000 people in the UK have FND, yet many healthcare professionals haven’t even heard of it. Women are disproportionately affected, making up between 60% and 75% of patients.
“It was a relief to finally have a diagnosis. But all they did was tell me to look at a website, and they discharged me,” said Jayne.
She has now had FND symptoms for almost five years, and has had repeated incidents of waking up and being unable to function from the waist down.
She joked half-heartedly: “I’m falling to bits.”
Since then, Jayne has had to battle with explaining her condition over and over again, even to doctors. It was through her FND support group, not her doctor, that she found out about treatment options, based on what had and hadn’t worked for others. After being in the support group for a couple of months, she decided to volunteer to be a peer support volunteer to help others going through the same thing.
Then Jayne’s seizures unexpectedly began ten months ago. Non-epileptic seizures are a common symptom for those with FND. Experts say the best way to deal with them is to ensure the person is safe from danger and wait it out.
“I was sitting down and I just blanked out,” she said.
“It was like somebody had switched me off and switched me back on again.”
She now experiences regular seizures, some big, some small. Sometimes she can feel them coming on, but she is still unsure what triggers them.
“As it got worse I started shaking a bit like somebody having an epileptic fit.
“I can hear people but I can’t communicate with them.
“People ask me if I’m okay and I can hear them but I can’t do anything about it. It’s horrible.”
Because of her seizures, Jayne needs to make sure she is in a safe place if she is about to have a seizure. Sometimes this means if she knows she is going to have a bad day, she will stay at home in bed.
“I’m just a bit scared about going out by myself,” she said.
Jayne’s seizures were also a big contributing factor to her leaving her job. She previously worked at a supermarket, but was having regular seizures, and her mobility was deteriorating.
“The biggest impact for me has been my independence and mobility. I was always quite independent.
“I had worked since I was 14 so not working blew my mind.
“Now I’ve always got to rely on people, and I don’t like that.”
One of the people who helps Jayne is her boyfriend Alan. But she said she sometimes feels like a burden on Alan and her family.
“He didn’t sign up for this. I wasn’t like this when we first met and I’m basically disabled now,” she said.
“I find that really hard, especially some days when I just want to go to bed and lay down and he doesn’t understand.
“It’s just hard. Physically and mentally.”
Thankfully Jayne has managed to retain her sense of humour.
Jayne’s sister, Fiona, recalled visiting her in March of this year. Her and Jayne had taken Jayne’s mobility scooter out to the shops near Jayne’s house and were returning home up a hill when a young boy on a bike rode alongside them. Him and Jayne locked eyes as he sped up to overtake them and she flipped from the ‘tortoise’ setting of her scooter to the ‘rabbit’ setting, racing the boy on his bike.
“It was as if she was saying “I can go faster than you mate”,” said Fiona.
Jayne said the main things that need to change is a set care pathway and medical professional’s outlook on FND.
“Don’t just dismiss us and say there’s nothing you can do- there’s always something you can do. “We’re not making it up. Be more understanding to people that have got it.”
She said she hopes by the time children who have FND get to adulthood, treatment and awareness will be a lot better.
What is FND? The expert says…
Dr Chris Symeon, a neuropsychiatrist who specialises in functional neurological disorder, tells us more about FND:
FND is a brain network disorder. There is a problem with the way that the nervous system is communicating with itself and with the rest of the body.
The result of this communication issue is that the individual cannot use their body in a way that they would expect, despite trying.
Because FND can affect any part of the nervous system, and the nervous system controls the whole body, the symptoms can be very wide ranging. Often symptoms fall into categories, for example motor symptoms might result in increased movements like spasms, or may result in weakness.
People can also get sensory symptoms like odd sensations or loss of sensation as well as problems with bladder control. Cognitive skills and speech are also affected in some people with the condition, and this can sometimes have a greater impact on quality of life as they can really limit things like their ability to work.
There is no one reason why someone would have a specific symptom over another, it is usually multifactorial, meaning that there may have been something which triggered their symptoms such as physical or psychological illness, or an injury to the affected area.
There is a high level of psychiatric comorbidity in FND, meaning that people with FND are more likely to have conditions such as depression and anxiety. It is worth saying that it works both ways. There are plenty of people living with FND who don’t have a history of mental illness but that develop one as a consequence of living with FND.
It is also the case that other neurological conditions may be present, but that there may also be FND symptoms too. An example may be that in some cases of multiple sclerosis or stroke, there may be organic neurological damage resulting in some symptoms, but there may also be functional symptoms too, either on the affected limb, which we call ‘functional overlay’ in the medical profession, or elsewhere in the body.
The care pathway for FND patients nationally is severely lacking. There is a lack of parity when you compare it with other care pathways such as those for MS or Parkinsons. In my experience as a clinician patients often make significant improvements when they access the right treatment at the right time. Therefore it makes sense for us to be investing resources into providing this, so that people can continue having a good quality of life and require lower NHS services in the longer term.
“My GP told me I was imagining it”
When Linda Morley went to the doctor for FND symptoms, she was told by her GP that her symptoms were in her head, and was given a leaflet.
Linda, 67, who lives in Lincolnshire, has had FND for over 30 years. Her symptoms include muscle spasms, reduced mobility, fatigue, brain fog, and sensory sensitivity. She was told this despite already being diagnosed with FND.
“They were basically saying it is happening but you’re imagining it,” she said.
“I came away from that so upset, I was in a dreadful state. A lot of them just don’t believe in the illness.
“It is a real, debilitating illness. People aren’t making it up.”
A different doctor from the same clinic confirmed that she did in fact have FND, she just tended to experience sensory symptoms rather than the more physically obvious functional symptoms.
“They see someone and because you look fine, people think you’re making it up,” she said.
“You’ve got one person telling you one thing, one person telling you another thing. They’ve all got different answers.”
She has experienced several FND ‘flare-ups’ following traumas in her life which caused her symptoms to worsen. After her initial diagnosis in her 30s, she was able to recover over an 18 month period.
“I was able to live quite a good, reasonable life,” said Linda.
“I was never the same as anyone who hasn’t got the illness, but I could work, I could go out, I just had limitations on walking.”
She has since had three flare-ups, one following an operation, one following a road traffic collision, and most recently, following the death of her mother. Each time, she recovered to a certain extent, but her mother’s death three and a half years ago worsened her symptoms severely.
“I had an extremely stressful year. After mum passed away in August, I was fine at first, then in February it was like a light switch.”
Linda woke one morning to find her symptoms had relapsed with no warning.
“I’ve always been a very active person and it is kind of soul destroying when you’re active and then all of a sudden you can’t do those things anymore,” she said.
“It’s just so frustrating. Because you want to be able to, but you know you just can’t do them.”
A significant impact of Linda’s FND has been its effect on her as a mother. Her son was five years old at the time of her diagnosis.
“Because I couldn’t take him places, there was a lot of his school life I missed out on,” she said.
“He didn’t really have the childhood he should have had.
“It’s not just affecting the person who’s got it. Everybody’s life changes.
“10 years of our life was stolen away by this illness.”
Despite these struggles, Linda said attitudes towards FND have come a long way since she was diagnosed 30 years ago.
“Although there are still an awful lot of people out there that don’t believe in it, there’s a lot more awareness now.
“Now we need a pathway so people don’t go through what I’ve gone through.”
She said to those struggling with FND: “There is hope and people do get better.
“If you’re not happy with what one doctor says to you, move on.
“I went five years without a diagnosis. In the end, you believe you’re going mad because no one’s listening to you. I wouldn’t wish anyone to have to go through that.”
Need for FND focus on children
Charity FND Hope UK has been campaigning for a better FND care pathway since it was set up in 2017.
At the moment, the focus is on implementing a pathway for those aged 18 and over, but Cindy Smulders, chairperson of the charity, said a pathway for those under 18 needs to be the next step.
She said: “The kids have always been slightly ignored and left, everything was blamed on stress, school, exams, parents pushing you too hard.
”Now they’re beginning to understand that that’s actually not always the case.”
She said it used to be very rare to have a child under the age of 10 diagnosed with FND, but now that’s not the case. Once the adult care pathway is implemented, it will be easier to do the same for under 18s, which is why the charity has recently brought paediatric clinicians onto their board.
Mrs Smulders’ daughter was 15 when she suffered a head injury at school and was diagnosed with FND. At the time of her injury, she was fit, healthy, and a junior Great Britain kayaker.
But her daughter’s condition was actually caused by a brain injury, which caused her to experience FND symptoms. Because of her diagnosis, a lot of her symptoms, including infections, were ignored or brushed off as FND.
This isn’t uncommon for those with FND. It can be easy to assume any medical issues are caused by FND, but that is not always the case. New symptoms should always be checked out and dealt with.
“Diagnosis by elimination is not good enough. It needs a multidisciplinary approach for positive diagnosis,” said Mrs Smulders.
Now, her daughter is 21, in a wheelchair, and pararows for Great Britain.
“You throw psychology at something like that, it’s not really going to help. Physically something needed to be done,” said Mrs Smulders.
“If there was a proper care pathway for FND, and properly educated trained clinicians, a lot of what happened to my daughter wouldn’t have happened.”
Children with FND largely present with the same symptoms as adults. One of the biggest barriers they face is dealing with FND symptoms at school.
Mrs Smulders said a number of parents from FND Hope UK’s peer parent support group have reported schools punishing and even excluding their children due to their FND symptoms. Under 18’s with FND are also likely to be referred to CAMHS, the child and adolescent mental health service. But not all cases of FND are psychological or caused by trauma. In fact, Mrs Smulders said in children FND is often caused by accidents or illnesses, not psychological trauma.
“I don’t think people do it deliberately, it’s because of a lack of knowledge,” she said.
“If there isn’t a psychological trauma, and they try to find one, that does an awful lot of damage.
“Can you imagine what that does to a family when they’re saying something traumatic must have happened in her childhood?”
The charity is also working on producing educational films with medical professionals to show in schools, workplaces, and medical schools.
This is in the hopes that teachers will know how to handle a child with FND. For example, the best course of action for FND seizures is to wait them out, but if a child has a seizure at school and the teachers are unaware of how to handle it, an ambulance will be called unnecessarily.
“If there was a pathway, the NHS would actually save a lot of money,” said Mrs Smulders.
A recognised NHS care pathway would allow for quicker diagnoses and quicker treatment for both children and adults with FND.
Mrs Smulders hopes that in 10 years, no one will have to ask what FND is.
“People can get better, but the longer they’re left, the less likely that is,” said Mrs Smulders.
“It just seems so cruel that they’re left in this limbo situation where the likelihood of them getting better decreases and the cost it’s going to require increases.”
FND Hope founder, Bridget Mildon, said she never expected the charity to grow into what it has. It was initially set up as a website for patients to share their FND stories on.
She said: “It’s definitely transitioned over the last 10 years since when I first started advocating, though I still think that the medical stigma is probably the one thing that holds us back.
“This isn’t something that just was discovered. This has always existed, and the fact that it’s just getting the attention that it deserves now is sad because people have been suffering for all these years.”
Miss Mildon said: “I think in general, people just want to be acknowledged and recognise that they’re trying to get better and they want their lives back. The longer that a patient has to experience this type of debilitating illness is heart wrenching.”
“We appreciate the doctors that are trying to make a difference. And it’s important that we allow patients to be heard and we allow their voices to be heard in a way that they don’t feel like they have to apologise for being ill.”
App developed to help those with FND
Dr Chris Symeon, a neuropsychiatrist, has developed an app along with other clinicians specialising in the treatment of functional symptoms. The app is targeted towards those with FND.
It is called ‘MyFND’, and is available for free on the app store.
Dr Symeon said: “The myFND app aims to support people living with FND to understand and self-manage their condition.
“FND can be a very isolating illness, and often patients are just given the diagnosis without any idea of what happens next or an explanation of what it is.
“The app aims to provide a space where people can read more about the condition, and also use some straightforward strategies to ground or distract themselves.
“It also offers a diary – where you can monitor how symptoms change and identify patterns in presentation, which can be useful for communication with healthcare professionals as it contains graphical representation.”
MPs sign declaration for FND care pathway
On 8 February 2023, representatives from FND Hope UK attended Parliament to address the issues those who have FND face, in the hopes of making change.
This was their fourth attempt at speaking in Parliament as they were rescheduled once because of Brexit and twice due to Covid-19. The event saw 22 MPs sign the charities declaration for:
- A dedicated FND care pathway at every UK neuroscience centre, which reflects the National Neurosciences Advisory Group optimal care pathway.
- The development of FND guidelines by both NICE and SIGN, to ensure consistent care is available across the country.
- Increased training in FND for healthcare professionals, to raise awareness of FND signs and symptoms and ultimately improve diagnosis.
The event was sponsored by Ben Lake MP, who said: “The event was the first ever parliamentary awareness event for FND.
“Despite its prevalence, FND is really under-prioritised so I wanted to work with FND Hope UK to do something that would draw attention to the issues and what we as MPs can be doing to help our constituents living with FND.
“There is extremely varied access to care services across the UK – in some areas, support is virtually non-existent.
“This means some people are unable to get the care they need. This not only means the physical symptoms of FND are left to worsen, but also the impact on an individual’s mental health, ability to work, socialise.
“FND Hope UK has been working with experts to develop an optimal FND care pathway. This pathway now needs to be adopted across the UK, in all ICSs in England and in the devolved nations.”
Cindy Smulders, chairperson for FND Hope UK, said Parliament was a huge step for the charity.
“Any patient should have some guidance where they can say- this is what’s supposed to be happening to me,” she said.
Study finds FND could be linked to inflammatory processes
A new study linked the body’s inflammatory processes to the nervous system, which could explain functional symptoms. Professor Christina van der Feltz-Cornelis is a world-renowned mental health researcher and chair of psychiatry and epidemiology at the University of York. She has led studies into the causes of functional neurological disorder and medically not yet explained symptoms, which includes functional neurological symptoms.
In a study known as the ‘CANDO study’, Mrs Van der Feltz-Cornelis found indications that inflammatory processes in the body could influence the way our nervous system works, perhaps leading to functional neurological symptoms.
She said: “It was a very small study because the pandemic started so we couldn’t include as many patients as we wanted. But in the patients that we could recruit, we saw they all had highly elevated inflammatory markers.
“There is some kind of inflammatory process going on. It’s not an inflammation like in pneumonia, it’s not that severe. It is a slowly ongoing, low level inflammatory process that I think somehow disrupts the function of nerve cells throughout the body.
“There have been observations that for example, if there is an old trauma somewhere in the body, like a broken leg or an old infection or a stroke, that part of the body is more vulnerable for FND.”
But she said she doesn’t think this is the only cause, and more research needs to be done around this.
Another study Mrs Van der Feltz-Cornelis worked on found that 12% of people with FND, over the years, turned out to have another condition that explained the original symptoms.
She said: “Some neurological conditions develop very slowly. So you only have a tiny symptom every once in a while and then it may take you a year before you go to see a neurologist.
“And they might not find anything on a scan, but 10 years later, they will scan again and find something, and that is because the disease develops slowly.
“On one hand, you do not want to continue with endless new examinations because it keeps people from starting treatment that might help. On the other hand, if you do nothing and you keep doing nothing for years, then in the end sometimes you miss the people who did have something and then after many years have something very serious.”
To combat this, she said those with FND should get a neurological examination every couple of years. She also believes more clinics specific to FND should be opened in the UK where psychiatrists, neurologists, and other doctors can work together to tackle FND in a multidisciplinary approach.
She said more research into FND needs to be conducted, specifically into the causes, as this will lead to developing proper treatments.
“There’s still a lot that we don’t know about FND,” she said.
“But the quicker a person is diagnosed with FND the better their outcomes are because then they can start the treatment sooner.”
“I won’t let it end my life”
“I’m trying to get it to live with me, not me with it.”
This is the mantra of Steve Portelly, 64, who lives in North East Scotland.
“It’s a daily struggle, but not an impossible daily struggle.”
His symptoms include fatigue, a weak digestive system, reduced hearing, brain fog, and reduced mobility on bad days. Steve also has a diagnosis of peripheral neuropathy, a type of nerve damage causing pain, numbness and weakness.
Because there is no treatment pathway for FND on the NHS, Steve has had to self-fund his treatment. He pays privately for psychotherapy sessions and supplements, including CBD oil, which help ease his symptoms.
“The major problem with FND is that there isn’t an NHS treatment pathway for FND at all,” he said.
“And that leads to a significant lack of funding.”
He also attends Tai Chi sessions which help with his mobility.
“It’s all about managing symptoms, and the individuals can do an awful lot themselves,” he said.
“Get to know yourself and get to know how your body’s working, when you have good days and when you have bad days.
“And if necessary, keep a journal every day and you might spot some trends.”
Steve’s symptoms were a key factor in his decision to retire from work. He was struggling with his symptoms, especially fatigue, when he was made redundant.
“I thought, can I hold out a full time job? No, I couldn’t. Did I want another job? No, I didn’t. What were the chances of getting another job? Very low. Can I afford to retire? Yes.”
“And I have never looked back. I could not do a day’s work now. And some employers are not very sympathetic. The minute they hear FND the alarm bells start ringing.”
Now, he tries to manage his fatigue by pacing himself each day. Sometimes this means saying no to things he previously would have said yes to, which he said is a big part of managing FND symptoms.
“I’ve now started to learn to say no, if it’s a particularly bad day, I’ll just say can’t do that,” he said.
“With FND, you have to be a bit selfish. If you can’t do it, don’t do it.”
One way he keeps on top of his fatigue is by using something called the ‘spoon theory’. He keeps 10 wooden spoons at home, each representing a unit of energy. Tasks, like walking the dog, taking a shower or going to the shops, would take a certain number of spoons away.
“I actually have the spoons on display, which irritates everybody in the house,” said Steve.
“So I know and everybody else can know as well.”
Despite these management techniques, Steve still has bad days, as do many other people with FND. Disorders like FND can be very frustrating to those who have it, and this often means variable emotions.
“One of the emotions I have that goes through my head a lot as a man is: I can’t function as a man, husband, father.” he said.
“And one thing that my wife has said to me, she said she dreads coming down in the morning because she’s never sure what mood she might find me in.
“I might be in a good mood, I might be in a foul mood. And I think one of the things that comes with FND is mood swings and that is difficult.
“I feel I’ve come to terms with my diagnosis quite quickly.
“Living with FND is taking a little bit longer.”
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