Hi! I'm Gemma, and this is my story… 

I was diagnosed with fibromyalgia when I was 20 years old but showed my first symptoms in the summer of 2014 when I was 19 years old. 

My pain started suddenly while I was with some friends one afternoon. It began with sharp pains in my breast bone which radiated into my back and down my arms. I use to describe it as though someone was stabbing me over and over again from the inside.

The first few weeks after my symptoms started I was consistently being rushed in and out of the emergency department to try and find out what was causing my pain. After numerous blood tests and ECGs, the doctors would always discharge me without doing any further tests because the results always came back normal.

The last time I was rushed to the hospital a doctor walked into my room and said to me "you're clearly in pain, but you're not in enough pain for me to admit you for further tests so we're sending you home". It was at that moment I realised how alone I was in all this and that no one was willing to help me despite the pain I was constantly in, it started to break me as a person.

I remember thinking if this isn't enough pain then how much more pain do I have to be in for someone, anyone to help me? It was as though I didn't matter as a person. This, in turn, started to majorly affect my mental health. That evening I gave up on hoping for answers and decided to try and learn how to deal with the pain, despite my friends and family insisting I continued to ask for help.

At the start of 2015, I made the decision to move to Southampton for the final year of my degree and decided I didn't want to move to a new city not knowing what was causing my pain. The next day I made an appointment with my doctor and begged them to help. I explained that I had spent the last 6 months adapting to a new life that consisted of constant pain and worry. I told them that the thought of leaving my support system behind was a scary prospect, especially after the treatment I received at Torbay hospital. I was scared about how they'd treat me in Southampton.

After talking to the Doctor I was referred to a Pain Specialist in Devon who, I was told, would be able to look at finding ways to support me and help me manage my pain. After waiting several months for my appointment, it lasted no more than 10 minutes, during appointment he listened to what I had been through, took a brief look at my pain diaries and went on to check for fibromyalgia tender points, a method used by doctors years ago to diagnose fibromyalgia.

After this, he went on to tell me that I had fibromyalgia. I was so relieved to finally have a name for what I was going through that I had no idea the true extent of the condition or what my future looked like. The specialist went on to explain that my pain would never get any better but at the same time would never get any worse. I believed every word he said, not knowing how untrue this was until later in my life.

I was also told that I'd be given a large amount of support from numerous people within the pain team in Devon but this was never given. Instead, the doctor put me on a large amount of trial medication that they hoped would work. For several years I was trying different medication that wasn't helping, over time I began to feel like a lab rat.

In 2017 I went back to the doctors and told them that I was stopping all my medication. I told them that I wanted to try and manage the pain on my own because what they were doing wasn't helping me. I planned on doing this by changing my lifestyle and losing a significant amount of weight.

Over the next year, I managed to lose a significant amount of weight. I found I was able to manage my pain with regular exercise and healthy eating. That was, until one day while at work I experienced a sudden sharp shooting pain down one of my legs.

Initially, I thought I might have trapped a nerve or something similar, so I continued with my day like normal, once the pain had subsided. The next day I experienced the pain again, this time in both legs as a result I lost sensation in them despite still being able to walk and do things like normal.

I went to the doctors as this wasn't common with my fibromyalgia and they diagnosed me with a pulled muscle. I was told it would ease within a few weeks and to continue as normal but to be careful. Following the doctor's advice, I did just that, but the feeling in my legs never came back. Worried I went back to the doctors who diagnosed me with something different but again said it would get better in a few weeks.

I then continued this process of seeing a doctor, being diagnosed with something and following the care advice given many times and despite me asking, they never allowed me to have further tests done to make sure it wasn't something serious. 

After 6 months of little to no sensation in my legs and convincing myself it was something serious, I broke down in the GP's office. I couldn't see the end and didn't know if I would ever get the feeling back in my legs. I was mentally exhausted.

After months of physio and CBT, I was able to process what was happening to me and with time, ease my anxiety. I slowly began to gain feeling back in both my legs but I never truly understood what caused it.

A few months later, I relapsed and went straight back to the doctors who thought this was all linked to my fibromyalgia, despite being told it wouldn't get worse. During that appointment, the GP finally listened to my concerns and referred me to the Spinal Unit in Southampton to ensure it wasn't anything serious.

During my appointment with the spinal team, I was told that I had bad posture and she didn't think the pain I'd been experiencing all these years was due to fibromyalgia but was a consequence of my poor posture. She decided it was best for me to be referred to the pain clinic for further tests and to reevaluate whether I had fibromyalgia or not. This came as a huge shock to me.

After attending a pain session, I waited for an appointment with a consultant from the Pain Team who during my consultation, for the second time in my life, confirmed that I had fibromyalgia. She gave this diagnosis by only looking at me and in an instant, I felt the weight of the world come down on me because this time I understood what the diagnosis meant.

During the appointment, I was able to discuss what the pain clinic could do to help me and what help I would like to receive.

The hardest part about having fibromyalgia, for me, is not knowing what my pain or fatigue is going to be like each day. It's the constant worry about what might happen or if the pain will ever stop if it starts.

This past year I have been educating myself more on my own condition and looking into the numerous, yet vital research that Versus Arthritis have been conducting to provide better care for people with Fibromyalgia. This research is fundamental in helping people actually LIVE a better life rather than feel like they're just existing, which is something I did for 18 months about 3 years ago, but thankfully with the support of the pain clinic in Southampton I was able to turn this around and feel like myself again! 

Spreading awareness and making the invisible seen is something I’m incredibly passionate about, as it’s what will change the way people perceive those living with hidden disabilities in society and I feel this is my way of doing just that. Before I lost feeling in my legs I had began running and enjoyed the freedom this brought me so once I got the sensation back in my legs I decided that one day I would run the London marathon and I would do it in aid of Fibromyalgia to help spread awareness, get people talking and tell my story. 

I want to do this because I remember how it felt dealing with this on my own and believing there was no hope. I want people living with Fibromyalgia to know that there is hope and that they don’t have to suffer in silence like I did for so many years. If there's one thing I’ve learnt over the last 7 years it's that there’s always light at the end of the tunnel no matter how dark or hard the journey is.