How Does Functional Neurological Disorder (FND) Cause Problems for People with the Condition?

I haven’t written a post about FND for a while and I want to keep the awareness going of Functional Neurological Disorder (FND) which is a complex condition that affects the normal functioning of the nervous system and can lead to neurological symptoms which don’t have a clear structure or organic cause. Although the brain’s structure appears normal, communication and processing mechanisms become impaired, and this results in real and often debilitating symptoms for individuals who live with FND, its symptoms and the profound effect on their physical, emotional, and social well-being.

Understanding FND Symptoms

FND can manifest in a variety of ways, and this is what makes the condition challenging especially to diagnose and manage. Common symptoms include:

  1. Motor Symptoms:
    • Weakness or paralysis of limbs.
    • Tremors, spasms, or uncontrollable jerking movements (functional myoclonus).
    • Difficulties with walking or maintaining balance (functional gait disorders).
  2. Sensory Symptoms:
    • Numbness or tingling sensations.
    • Loss of sensation in specific areas of the body.
  3. Seizures or Non-Epileptic Attacks:
    • Episodes resembling epileptic seizures, but without abnormal electrical activity in the brain (psychogenic non-epileptic seizures or PNES).
  4. Speech and Swallowing Difficulties:
    • Slurred speech or difficulty forming words (functional dysarthria).
    • Problems swallowing (functional dysphagia).
  5. Cognitive and Psychological Symptoms:
    • Brain fog, concentration difficulties, or memory issues.
    • Anxiety, depression, or other emotional challenges often accompany FND.

How These Symptoms Affect Daily Life

The unpredictable nature and the wide variety of symptoms make living with FND particularly challenging. Here are some of the most common ways FND impacts individuals:

1. Physical Limitations

Symptoms like weakness, paralysis, or gait disturbances can hinder mobility and independence. Simple tasks, for example climbing stairs or walking short distances, can become arduous or impossible. Fatigue can often exacerbate physical difficulties, and can leave individuals unable to participate in work, hobbies, or daily routines.

2. Emotional and Psychological Challenges

Living with FND can be emotionally taxing and being understood and believed can also be difficult for an individual living with FND. People often experience anxiety, depression, and frustration as they cope with a condition that lacks clear explanations or straightforward treatments. There is a stigma surrounding “invisible illnesses” that can lead to feelings of isolation or being misunderstood by friends, family, and even healthcare providers, who don’t have an understanding of the condition. I have had instances where I’ve been told “There’s nothing wrong with you, Rachel,” by a paramedic, telling a nurse in A&E and they don’t know or understand what it is even a neurologist when I presented in a wheelchair and being told it’s psychological or “all in my head.” This stigma and ignorance has been very difficult to deal with and I am sure I’m not alone, which is why I want to raise awareness of the condition and be in a position to be able to say to people that I understand and that change needs to happen.

3. Social Impacts

FND can strain relationships and can limit social engagement. Individuals may withdraw from social activities due to embarrassment, physical limitations, or fear of triggering symptoms. The unpredictable nature of FND episodes, such as non-epileptic seizures, can make public outings daunting.

4. Employment and Financial Struggles

The disabling symptoms of FND often prevent people from maintaining steady employment which can lead to reliance on benefits or a reduced income, coupled with medical expenses, that can create financial burdens for many, applying for disability benefits becomes a necessary but stressful process and it shouldn’t be.

5. Challenges in Diagnosis and Treatment

FND’s symptoms mimic those of other neurological conditions, often leading to delayed or incorrect diagnosis. Misunderstandings among healthcare providers can also result in patients feeling dismissed or accused of “faking” their symptoms and this lack of validation compounds the emotional distress and delays appropriate treatment.

The Brain-Body Disconnect in FND

The root of FND lies in the dysfunction in how the brain can process and communicate signals to the body. For example:

  • During a functional movement disorder, the brain sends incorrect signals to the muscles, causing tremors or paralysis.
  • In sensory symptoms, the brain may misinterpret or fail to register sensory input.

These disruptions create real symptoms, that are not under conscious control, therefore debunking the misconception that FND is “all in the mind.” When I was told about my diagnosis of FND I felt relieved to some extent because I had been told so many conflicting comments and had ignorant attitudes towards me that were unfair and I think attributed to problems relating to my mental health.

Living with FND: Coping Strategies

Although there is no universal cure for FND, there are a variety of management approaches that can help improve the quality of life, for example:

  1. Multidisciplinary Treatment:
    • Neurologists, physical therapists, occupational therapists, and mental health professionals work together to address symptoms of FND.
  2. Therapies:
    • Physical therapy helps retrain movement patterns.
    • Cognitive-behavioral therapy (CBT) addresses emotional triggers and coping mechanisms.
  3. Self-Management Techniques:
    • Mindfulness, relaxation exercises, and pacing activities help manage stress and reduce symptom severity.
  4. Community Support:
    • Support groups and advocacy organisations provide connections and resources for individuals and families.

Raising Awareness and Understanding

FND remains poorly understood by the general public and some medical professionals, contributing to stigma and inadequate care. By increasing awareness of FND to understand it as a legitimate neurological disorder is essential to ensuring individuals receive timely diagnoses, compassionate care, and effective treatment.

Conclusion

Functional Neurological Disorder causes a range of physical, emotional, and social challenges for those affected. Despite its complexities, understanding FND and its impact can foster empathy and improve support systems. With the appropriate treatment and management of the condition, individuals with FND can work towards reclaiming control over their lives and achieving a better quality of life.

Leave a comment