A few important points to begin:

• I am not an expert in Functional Neurological Disorder (FND); it affects everyone differently, and this is my own account.
• I cannot give medical advice about FND. If you are looking for guidance, don’t hesitate to get in touch with FND Ireland or your GP.
• Trigger warning: the videos below may be disturbing to some

Growing up, I was always big, at one point weighing 20 stone, though I’m now 14.5. Despite this, I was always interested in sport. I played rugby and football (badly) at school, though having dyspraxia made me clumsy and injury-prone, so pain became something I got used to. I regularly went to the gym and enjoyed running, cycling, and swimming.

In 2008 (I was 23), I was walking my dog, a large Labrador, when she lurched forward as another dog approached and pulled my arm with her. I felt a pinch in my back, but it wasn’t serious, so I carried on. The next morning, I could barely get out of bed. I recovered eventually, but was never again able to sit comfortably on a sofa, run, or bend down easily. I saw a specialist, but he dismissed it as wear and tear.

I was in pain from it for years. I tried everything: medications, physiotherapy, heat pads, meditation, but they offered little relief. Two days before Christmas 2017, a chiropractor pressed on my lower spine and, hours later, my arm rose to a 90-degree angle and locked in spasm for eight hours. Muscle relaxants, anti-inflammatories, and painkillers didn’t help; eventually the pain subsided on its own. I kept a Word document of every appointment and recommendation so the next doctor could see my notes (I highly recommend this). My GP referred me to the Sports Surgery Clinic in Santry, where they discovered a disc bulge at L5-S1, visible on my 2008 scan but never detected. They recommended Botox injections: the first was 100% effective for two to three months, the second around 60% effective for six months, but the third had no effect.

In 2019, I saw Prof Paul Murphy, a pain specialist at St Vincent’s Hospital, who recommended lumbar rhizotomy surgery. This brought some relief for roughly a year, but it was very expensive.

2022 was a very difficult year. I lost my job, people close to me had mental health crises, and the stress of COVID compounded everything. I began experiencing severe spasms that left me on the ground in agony for hours (see videos below), with sensations like my muscles were being electrocuted, locked solid, or tearing through my skin, sometimes leaving my leg shaking uncontrollably. I withdrew from social events, unable to predict when a spasm might strike, though I kept up my stewarding work at the Aviva Stadium. When spasms hit in public, I had to ask friends or family to punch me in the affected area for relief (which some took great pleasure in!).

I started keeping a diary spreadsheet, tracking my mental and physical health, daily step count, social interactions, and anything I that day. The strategy is that if I put down some I did that day before, it might have contributed to a difficult next day, all scored out of five. For physical health: a 3 meant an average day with mild spasms, such as my head tilting or my arm moving slightly; a 4 meant one to three hours on the ground, as in the videos, and could be excruciating; a 5 meant over three hours in excruciating pain.

In 2022, my GP referred me to Prof Tim Lynch’s team at the Mater Hospital. A junior doctor and senior nurse examined me, and both said they’d never seen anything like it. A senior specialist concluded it was Functional Neurological Disorder with Non-Epileptic Seizures: the spasms weren’t simply back pain but originated from both my brain and my back, with stress increasing physical triggers such as carrying heavy loads.

For roughly two years, my average physical health score was 4.2, meaning hours on the ground at a time. In 2023, Dr Murphy prescribed gabapentin, which was life-changing, bringing my score down to 3.5. A friend who is a qualified masseuse suggested a massage gun, and I was later recommended a simple rolling pin, which I now use for an hour daily on every muscle group to release tension. Family and friends in the medical profession helped explain things simply, and I now have monthly therapy sessions where I review the month with a therapist to develop strategies for reducing stress and physical pain.

I still have days on the ground for hours, which means I cannot work full-time, and I cannot guarantee I’ll make a meeting if a spasm might strike. I manage the odd day of stewarding or training and write articles; I drafted much of this one with my head pinned to my shoulder. I now receive Disability Allowance and can work up to 17 hours a week alongside it, though I avoid working more than two consecutive days due to the pain the following day.

So, to summarise, I have a lifelong, incurable disability that affects me every day. It took over 15 years to diagnose and has impacted my social life, sleep, ability to travel, relationships, employment, and mental health. However, it is not as bad as it once was, and I’ve developed strategies that work for me. As Dr Stephen Shore says of people who have autism, “if you’ve met one person with Autism, you’ve met one person with Autism”: what works for one may not work for another. It’s very similar with FND.

My tips:

• Document everything: every appointment, every date, everything that was said.
• If you have a family member in healthcare who can explain medical information clearly, they are invaluable.
• Keep a pain diary with scores, tracking what influenced that each day.
• Do not hesitate to seek a second opinion. I wish I had done that in 2008.
• Build a support structure of family, friends, or support groups.
• Consider therapy: a judgement-free space to talk and develop personalised coping strategies.