Functional Neurological Disorder/Conversion Disorder

Hi, my name is MaryLouiseWebb. I'm here because I want to engage in conversations about my conditions, find support and explore life.

#MightyTogether #Anxiety #Depression #PTSD #ComplexRegionalPainSyndrome #PolycysticOvarySyndromePCOS #FunctionalNeurologicalDisorder

My National Disability Insurance Scheme (NDIS) journey has stalled again, with at least another 9-week delay. I will likely be in the hospital before this next meeting, still waiting for the NDIS to accept me into the Scheme. Not being able to satisfy the questions they asked my clinical team (More on this later).

I don’t remember a time in my adult life I wasn’t in pain. I have learnt to mask, tricks to take the edge off, faking it purely keep running anyways. I had a workplace injury when I was 20. As a result, I have chronic pain, which has recently been defined as a permanent disability in its own right.As such, my baseline functional mobility has steadily declined since 2010. All because I went to the bathroom one morning getting ready for work (amazingly, my boss picked me up that morning because I couldn’t drive but was adamant I was going to the office). When I stood up from the toilet, I heard my hip pop, leaving me in agony with a partially dislocated hip.

Over the six years that followed, I was subject to a plethora of tests, diagnoses, new injuries, hospital stays, multiple surgeries, and an extensive list of symptoms that never made sense, oh, and many incorrect or partial diagnoses.I learnt in 2016 that I had also developed a Functional Neurological Disorder (or FND for short) because of my chronic pain (More about FND here).I am currently going through the Administrative Appeals Tribunal (more information here, www.aat.gov.au/about-the-aat ) in short, an independent body that reviews decisions made by a commonwealth body (for me, the NDIS)For those counting at home, this is my fourth interaction with the NDIS trying to gain access to the Scheme. (I did go through this process 5 years ago for my daughter)I have just concluded my second case conference. There was a simple instruction at the first case conference. For a medical professional, to answer some prepared (from the NDIS Lawyer and disputes team) questions. These questions were to focus on the following:

“Section 24(1)(c) requires that the Applicant satisfy the Respondent that his Impairments result in a substantially reduced functional capacity to undertake one or more specific functional activities, being communication, social interaction, learning, mobility, self-care and self-management.”

Our response was detailed and evidence-based and referenced my functional capacity on good and bad days, clearly articulating my lifelong Disability and impairment.This was meant to be the end of it. Either the NDIS liked what I wrote, or they would send me to an ‘Independent Medical Assessment’ (more than likely an Occupational therapist).Even though we met the brief and answered the question (exceptionality well, mind you), the NDIS Lawyer and Disputes Team had ‘one more question’ for my GP (I had under seven days to deliver this response).

“The Agency would like to thank you for the information and response you have sent through in relation to the targeted questions. They have greatly assisted the Agency with understanding your condition and functional capacity. The Agency does have one further request for information and that is just in relation to your flare ups in relation to Functional Neurological Disorder. In order to assist the Agency would you be able to provide some further information from a medical practitioner in relation to how often your flare ups occur and how long these flare up episodes last for?”

Read the full story: jeramyhope.com/ndis-take-4

Hi, my name is Jess83. I've been diagnosed with fnd anxiety depression pain migraine ptsd I have pain burning pain in my legs my hands don't work sometimes

#MightyTogether #Anxiety #Depression #Migraine #PTSD #FunctionalNeurologicalDisorder

At the age of two, I experienced my first episode of Functional Neurological Disorder (FND), which left me walking with an unusual gait, resembling that of a “man on the moon”. My parents immediately sought medical attention, thus beginning a seventeen-year journey of constant visits to healthcare facilities, undergoing countless tests and scans to determine the cause of my distress. Despite these efforts, the diagnosis remained elusive, and the cause of my condition remained a mystery. In this article, I will share my personal experience with FND, shedding light on the illness that impacts the central nervous system, disrupting the transmission of accurate signals from the brain to the body. An often misunderstood condition that affects many individuals worldwide.

During my teenage years, I was housebound due to paralysing anxiety caused by FND. I experienced symptoms such as: dissociation, extreme nausea, double vision, convulsions, brain fog, and a crippling lack of balance. These symptoms made it impossible for me to attend school regularly or even stand and eat properly. Despite home-schooling, I missed over 50% of my secondary school teachings, leading to isolation, significant weight loss and a rapid deterioration in my mental well-being.

At 19, I transitioned from children’s to adult healthcare and was finally diagnosed with Functional Neurological Disorder, a bittersweet moment. Although relieved to have a name for my symptoms, there was a lack of knowledge and awareness for the disorder, resulting in a lack of treatment. While my neurologists have been supportive, other aspects of healthcare were not. I realised this was a lifelong condition and I needed to learn better coping mechanisms. The alternative was unthinkable.

After years of therapy and mindfulness practices, I’ve learned to deal with my Functional Neurological Disorder attacks in a healthier way. Although I still experience 5-6 hourly lasting attacks each day, I’m no longer paralysed by fear. Don’t get me wrong, the daily symptoms can still be overwhelming and lead to depression and anxiety, but I’ve found ways to better cope. I have a supportive network of friends and family, and I pursue my passions in writing and creativity. I remind myself of how far I’ve come and how much more I can achieve. Although turning on a lamp may still be a challenge at times, I’m optimistic about my future and my ability to live a fulfilling life despite my condition.

If you or someone you know is affected by the isolating illness of FND, I highly recommend checking out online communities like FND Hope and The Mighty. These partnerships go a long way in not only raising awareness, but also in providing a sense of comfort and support, reminding us that we are not alone in our struggles. Being a part of an online community where individuals can share their experiences with FND can be incredibly helpful and empowering for everyone involved.

FND Hope: fndhope.org