Living with Fibromyalgia: My Journey Through Pain, Diagnosis, and Resilience

Living with Fibromyalgia: My Journey Through Pain, Diagnosis, and Resilience.

Introduction

Fibromyalgia is a chronic condition characterised by widespread musculoskeletal pain, fatigue, and tenderness in localised areas, the pain and its intensity fluctuates day to day and even hour to hour. Fibromyalgia affects approximately 1.8 to 2.9 million people in the UK. Despite its prevalence, fibromyalgia remains a misunderstood and often misdiagnosed condition, leading many sufferers on a prolonged journey before receiving a definitive diagnosis.

In this blog post, I aim to share my personal journey with fibromyalgia, detailing the onset of symptoms, the challenges faced in obtaining a diagnosis, the impact on my personal and professional life, and the strategies I’ve adopted to manage the condition. Through this narrative, I hope to shed light on the realities of living with fibromyalgia and offer insights to others navigating similar paths.

The Onset: A Mysterious Illness

My journey began in February 2020 when I contracted COVID-19, just before the UK entered its first lockdown. At the time, testing was scarce, and according to news reports, there were only two other confirmed cases in Wales, making me one of the earliest known cases in the region. While I wasn’t hospitalised, I experienced a persistent cough, high fever, severe headaches, and extreme breathlessness. Although I eventually recovered, something felt off.

By October 2020, I noticed a significant decline in my energy levels. Simple activities left me breathless, and I found myself dozing off during conversations or even in public places like the pub. By Christmas, I began experiencing aches and pains in my feet, ankles, calves, neck, and shoulders. Initially, these pains were mild but noticeable.

Seeking Answers: The Diagnostic Odyssey

Concerned about these symptoms, I consulted my GP, who ordered a series of tests, including blood tests, scans, a virtual colonoscopy, and X-rays. All results came back normal. Over the following months, I underwent numerous tests and tried various medications, including Gabapentin, Pregabalin, Co-codamol, Amitriptyline, and Duloxetine. While some provided temporary relief, they often came with undesirable side effects. Eventually, I settled on Gabapentin, which, although not perfect, was tolerable.

In April 2022, my pain intensified. A full-body MRI in May revealed no abnormalities. I was referred to nephrology and neurology departments, both of which found no issues. Finally, a rheumatology consultation ruled out arthritis and diagnosed me with fibromyalgia. While it was a relief to have a name for my condition, I soon realised the challenges that lay ahead.

Understanding Fibromyalgia

Fibromyalgia is a complex condition with symptoms that vary among individuals. The primary symptom is widespread pain, but sufferers may also experience:

• Fatigue
  
  
• Sleep disturbances
  
  
• Cognitive difficulties (often referred to as “fibro fog”)
  
  
• Headaches
  
  
• Irritable bowel syndrome
  
  
• Sensitivity to light, noise, and temperature
  
  

The exact cause of fibromyalgia is unknown, but it’s believed to involve a combination of genetic, environmental, and psychological factors. Triggers can include physical trauma, infections, or significant psychological stress .

The Impact on Daily Life

By Christmas 2022, my symptoms had worsened. The pain became more widespread, and I began experiencing severe headaches and cognitive issues. Tasks that were once routine became challenging. Eventually, I had to leave my job due to these limitations.

Determined to maintain my independence, I found a new job developing food items for a company’s coffee shops. Working independently allowed me to mask many of my symptoms. However, as the company expanded, the increased demands became overwhelming, leading me to resign.

I later secured a position at the Tea Rooms at Castell Coch. With the support of my colleagues and medication, I managed for a while. But by June 2024, my symptoms had progressed to the point where I could no longer work.

Navigating the Healthcare System

After my diagnosis, I was referred to the Chronic Pain Service. In April 2025, I received a text offering an appointment. Excited, I called immediately, only to be told all slots were filled. This experience was disheartening, highlighting the challenges many face in accessing timely care.

I also participated in an NHS pain self-management course with EPP Cymru. While I struggled to engage fully due to my symptoms, connecting with others who understood my experiences was invaluable. Our group formed a WhatsApp chat, providing daily support and camaraderie.

Physiotherapy sessions introduced me to Nordic Pole Walking, which significantly improved my mobility. Additionally, counseling sessions encouraged me to start this blog, offering a therapeutic outlet to share my journey.

Mental Health and Coping Strategies

Living with chronic pain took a toll on my mental health. Feelings of hopelessness and depression became frequent. At one point, my wife was so concerned she contacted the CMHT crisis line, leading to a psychiatric appointment. By the time the appointment came through I was feeling a little better, engaging with my blog and support group had improved my outlook, and helped me through those dark days.

Through planning and pacing, I’ve learned to manage my symptoms better. While bad days persist, I focus on activities that bring joy and rest when needed. Accepting my limitations has been crucial in maintaining a positive mindset.

Public awareness of fibromyalgia remains low, with 40% of people reporting they have never heard of the condition, and only 37% confirming they are aware of it. Increasing fibromyalgia awareness is essential to improve support and understanding for those living with chronic pain.

Final Thoughts

Fibromyalgia is a challenging condition that affects every aspect of life. While there’s no cure, understanding the condition, seeking support, and adopting coping strategies can make a significant difference. It’s essential to raise awareness and educate others about fibromyalgia to foster empathy and support for those affected.