Functional neurological disorder (FND) is a brain network disorder, in which the brain and body do not communicate correctly. There are many symptoms, caused by a variety of factors and triggers. Symptoms are real, even if they don’t show up on scans or blood tests.
There is little understanding of FND even among many health care professionals, meaning that in most parts of the country there is little specialist treatment. Many people diagnosed with FND feel dismissed by professionals, and clinicians are frustrated that they have few referral options. However, in recent years research into FND has proliferated, particularly its psychology and neurology, and treatment pathways are being devised.
FND can be diagnosed by positive signs such as:
- Hoover’s sign – when sitting, the weak leg regains strength and movement when the other leg moves against resistance.
- Tremor entrainment – the tremor often changes frequency to match a rhythmical movement made by the unaffected limb.
- Fluctuation in symptoms
- Distractibility – movement normalises and becomes more automatic when focus is elsewhere.
- Dissociative seizures look different from epileptic seizures – last longer with fluctuating levels of consciousness, usually the eyes are closed, side to side head movements.
Neurological tests and imaging scans can be performed to exclude other diagnoses, and may have the benefit of reassurance and confidence in the diagnosis of FND.
- Limb weakness
- Gait disorder
- Drop attacks
- Paralysis
- Dystonia
- Tremor
- Jerks
- Tics
- Speech difficulties
- Swallowing problems
- Urinary retention
- Visual disturbance
- Reduced or altered sensation
- Hypersensitivity to pain and external stimuli - sound, light, touch
- Paraesthesia - numbness, tingling
- Temperature dysregulation
- Dizziness
- Feeling that a limb doesn't belong to you
- Fleeting sensations like electric shock
- Dissociative seizures
- Absences, zoning out
- Derealisation and depersonalisation
- Poor concentration
- Difficulty thinking and understanding
- Confusion
- Dicouragement
A wide variety and combination of biological, psychological and social factors can result in the development and maintenance of FND. Stress plays a significant role, and may be physical or emotional. Instead of being able to identify and verbalise the stress, it is often expressed in symptoms. Dissociative symptoms in particular may be considered an unconscious way of escaping uncomfortable emotions or an intolerable situation.
- Childhood adversity - abuse, neglect, bullying, illness.
- Emotional trauma in adulthood.
- Other health conditions / pre-existing illness, particularly neurological
- Injury, surgery.
- Nervous system vulnerabilities.
- Brain injury.
- Extreme stress.
- Conflict.
- Illness or injury.
- Prolongued fatigue.
- Hypervigilance to bodily sensations.
- Temperature changes.
- Sensory overload or sensitivity
- Not being believed by health professionals or family.
- Strong medication that can worsen symptoms.
- Avoidance.
- Negative thinking patterns.
- Poor stress management.
- Illness beliefs and expectations.
- Social isolation.
- Bottling up emotions.
- Boom or bust pattern of activities.
- Low self-esteem, lack of assertiveness, perfectionism, driven behaviour.
Treatment for FND is ideally provided by a multi-disciplinary team and is individualised for each person. The team consists of:
- Neurologist - diagnoses the condition
- Psychiatrist - as some people with FND have pre-existing or resultant mood disorders.
- Neuropsychologist - helps a person adapt to having this diagnosis, to work out a formulation (factors that result in FND) and to identify triggers and coping strategies.
- Occupational therapist - helps the person set goals, find solutions around practical problems, pace activities and promote quality of life. May provide aids and adaptations for daily living.
- Speech and language therapist - helps manage speech and swallowing problems.
All these roles overlap to a degree. Each clinician has a role in providing education about FND as it affects the individual, and in teaching self-help strategies.
There are no quick fixes for FND but there are strategies that can be incorporated into daily life which will help reduce and manage symptoms. There are also some techniques that will reduce certain symptoms immediately, such as tremor, getting moving if your legs don’t work. See University College London Hospitals for videos on the topic.
The usual health and wellbeing advice applies to FND:
- Good nutrition.
- Adequate hydration.
- Regular sleep pattern.
- Exercise.
- Balance of activities - chores, leisure and rest.
- Social contact.
It is also important to observe the following:
- Pacing activities is essential to minimise fatigue. Prioritise tasks and try not to criticise yourself if you can’t achieve everything you would like to. Be sure to include leisure and hobbies every day. Rest between activities as necessary, and avoid a boom-and-bust pattern of activities, in which you do too much on good days and are exhausted for hours or days afterwards. Nevertheless, there may be occasions when it is worth overdoing things, such as special days out, but plan to reduce tasks the next day.
- Keep a journal to identify triggers for symptoms. It is not always possible or advisable to avoid all triggers, but to think of ways to face and manage them. Discuss solutions with trusted family members, friends or healthcare professionals.
- Express emotions to a trusted person. Bottling up emotions causes them to be expressed in unhelpful ways: FND symptoms.
- Social support is essential, and it is difficult for family and friends to watch their loved one struggling without wanting to help. But too much help can erode your independence and confidence. Supporters mustn’t be afraid to stand back and be guided by you. Maintain social contacts, and develop or extend your social network to prevent isolation.
- FND symptoms are a way of your body warning you that your nervous system is overwhelmed and you need to rest.
Nervous system regulation, somatic activities, polyvagal theory (the role of the vagus nerve in stress and calming), sensory integration, and the window of tolerance all overlap and share many techniques. Since in FND communication is impaired between the brain and body, it is necessary to restore the connection so that mind and body function together.
FND is triggered by stress which can stem from a wide variety of physical, emotional, social and environmental stimuli. The stress response is fight or flight (over-arousal of the nervous system) or freeze (under-arousal), which result in different kinds of symptoms. Symptoms of over-arousal include movement difficulties, coordination problems, speech disturbance, tremors, tics, spasms, sensory overload, tingling, poor concentration and information processing. Symptoms of under-arousal include muscle weakness or paralysis, functional seizures, dissociation (feeling disconnected from your thoughts, feelings and surroundings), numbness, fatigue.
People often experience warning signs of their nervous system becoming dysregulated, such as heart pounding, limbs trembling, agitation, mind racing. However, because of impaired interoception (not noticing or wrongly interpreting internal bodily sensations) and alexithymia (difficulty recognising emotions), it can sometimes feel that symptoms come out of the blue, with no warning, and therefore there is no time to use strategies to calm the nervous system before symptoms occur.
Some quick and easy ways to calm the nervous system are controlled breathing, muscle relaxation and grounding techniques. These can help avert or reduce immediate symptoms, but it is beneficial to use some of these routinely every day to maintain your overall arousal level in a comfortable range.
Breathe in slowly and deeply, to the bottom of your lungs. Hold for a moment and breathe out slowly, so that the outbreath is longer than the inbreath. This activates the parasympathetic nervous system, which calms the body and mind. Repeat six or seven times, and try to do this at intervals throughout the day, as well as when feeling stressed.
When feeling continually stressed, holding yourself in a tense position becomes normal so that you don’t realise that tiredness and pain are a result of muscle tension. There are many muscle relaxation exercises online that talk you through the process of tensing and relaxing each area of the body in turn. (If you have joint problems, avoid tensing muscles but just concentrate on fully experiencing the feeling of relaxing them.) Get into the habit of doing this at least once daily, and then when you feel symptoms coming on it will be easier to prevent them.
The purpose of grounding techniques is to bring your focus back to the present moment and place, and thereby reduce anxiety, stress and dissociation, which are likely to trigger symptoms. There are dozens of techniques (look online – some will make you laugh!) but some of the best known include:
- Concentrate on feeling the floor through your feet and the chair through your bottom and thighs.
- Tap your feet on the floor, clap your hands.
- Place your hands on the opposite shoulders and pat your shoulders repeatedly (integrating both sides of the brain is particularly helpful).
- Look around and name 5 things you can see, 4 things you can hear, 3 things you can touch, 2 things you can smell, and take 1 deep breath in and out.
- If outdoors, look out for, say, blue cars or people wearing red.
- Splash cold water on your face, or run cold water over your wrists.
- Intensive exercise such as running on the spot, star jumps.
- Weighted blanket.
- Drink through a straw.
- Eat crunchy or spicy food, or sour sweets.
Other ways to restore and maintain a regulated nervous system include:
This is the process of becoming aware of the input from all your senses. Any activity can be done mindfully, such as walking, eating, brushing your teeth, washing dishes. Focus in detail on the sensations of touch, movement, temperature, sound, vision, smell.
Yoga, tai chi, dance, stretching, shaking out stress. Walking uses both sides of the brain and its rhythm is calming
Being in nature is calming and good for mental health. Trees emit chemicals that protect themselves from insects and fungi, and these also reduce stress in humans. Sunlight increases our energy level.
Such as playing games, doing puzzles, doing something creative.
Listening to or playing calming, uplifting or energetic music, depending on your preference.
It is becoming evident from research that sensory processing difficulties are widespread among people with FND. Sensory regulation is the ability to detect, interpret, regulate and respond appropriately to sensory input from the environment. This maintains an optimal level of alertness and arousal and enables engagement with the world. FND symptoms are often triggered by bright lights, loud sounds and busy social environments, as well as internal sensations like heat and cold.
There are many ways of regulating sensory input, some overlapping with grounding techniques and nervous system regulation. In addition, strategies can include:
- Rocking, swinging, spinning, or sitting on a balance ball – such vestibular input tends to integrate stimuli from other senses.
- Pressure or weight-bearing activities increase proprioception (knowing where your body is in space), such as press-ups or taking your weight through your hands against a wall, jumping or skipping, running up and down stairs.
- Massage.
- Stroking pets, especially if on your lap.
In FND the brain has learnt abnormal patterns of movement. In times of stress when symptoms flare up, the brain relies on these unhelpful neural pathways rather than current sensory input to determine how to move. Neuro-physiotherapy helps retrain the brain to use the original automatic pathways to correct faulty movement patterns.
- OT can encourage regular use of self-help strategies, as above.
- Pacing activities is crucial to avoid a boom-and-bust pattern of doing too much, resulting in being too tired to accomplish anything else for hours or days.
- It is crucial to express emotions to a trusted person instead of keeping them to yourself. This helps release the pressure that causes symptoms.
- OT promotes routines, decision-making and problem-solving to encourage independence in daily living activities.
- OT encourages a healthy diet and exercise.
- Participation in social and leisure activities reduces isolation and improves mood and self-esteem.
- With the best of intentions family members can be over-protective. OT can support them to stand back so the person with FND can gain confidence in their own abilities to manage their symptoms.
- OT can provide aids and adaptations, but it is essential to recognise that these may prolong dependence and may therefore be counterproductive. However, they may be valuable in enabling a quality of life while undertaking rehabilitation.
- A psychologist can help you create a formulation so that you understand the factors that may have caused your FND.
- Psychological therapies can help you adapt to having FND, identify triggers and appropriate coping strategies.
- People with FND often have low self-esteem and poor assertiveness skills; cognitive behavioural therapy (CBT) can improve these. Being able to decline overwhelming demands from other people reduces the stress that often causes symptoms. CBT also helps you gain a more realistic outlook, re-evaluating negative thinking patterns and expectations.
- Acceptance and commitment therapy (ACT) teaches you to recognise that thoughts are not necessarily accurate reflections of reality, and to learn to observe them without getting caught up in them. For example, imagine your negative thoughts written on clouds and blowing away across the sky, or on leaves that float away downstream. ACT helps you clarify your personal values and take action consistent with these values, even when experiencing difficult emotions.
- Dialectical behavioural therapy (DBT) teaches skills to improve distress tolerance, emotional regulation and effective relationships (assertiveness, setting boundaries, active listening, negotiation, conflict resolution).
- Trauma therapy helps a person process and recover from traumatic experiences.
- Self-help is crucial.
- Don't bottle up emotions - talk to a trusted person.
- Social contact is vital.
- Pace activities to avoid or reduce fatigue.