Fibromyalgia warrior and guest blogger, Corinne Stone, suffers from Fibromyalgia. Corinne has added her face and story to Faces & Stories of Fibromyalgia. I am so grateful that she has shared this, as each story told raises awareness and helps fellow sufferers.
Hey there! I’m Corinne from Reading, UK. I was diagnosed at the age of 22, “one of the youngest cases” my consultant said. Lucky me! Whilst I was glad to have a diagnosis, figuring out what this meant for me and what life would look like living with this incurable condition, was a whole other matter. I had to research, and I had to research A LOT to try and grasp what this condition actually was.
My fibromyalgia story began on one of my backpacking trips in 2017. I started developing my symptoms at the end of May whilst in South America. It began with aches and pains in my joints and tiredness levels I had never experienced before. I did not think much further about it as to be honest with you, I thought it was because I was just extremely unfit and my body was seriously punishing me for doing all these hikes and treks out of nowhere. So, what did I do? I ignored the symptoms and carried on bearing the pain thinking it’ll get better the more I do. Cause that is how exercise works right? haha.
The next symptom I developed was anxiety. And this was pretty scary considering I was halfway across the world from my loved ones. My first anxiety attack was in Valle de la Luna (Chile) whilst biking through the mountains. Not ideal. It was terrifying but my friend and some strangers immediately jumped in to help.
The exact cause of fibromyalgia is unknown, but in many cases the condition appears to be triggered by a physically or emotionally stressful event. Two fundamental things happened to me on this trip which had a huge impact on me and led to my development of fibromyalgia.
- I got severely ill whilst in the Philippines from water poisoning a few months prior, which took a huge toll on my body. (I want to stress that although my last week in this country was very rough, it is an incredible, beautiful country nonetheless, and some of my best memories and experiences were had for the other 3 weeks I travelled there!)
- 6 weeks later my Auntie back home in the UK, passed away from Cancer.
Fast forward a few months and I’m back home, still suffering from my symptoms, but now the intensity has increased and lasts for longer periods of time. After a few visits to my GP, they suspected that I had developed ‘reactive arthritis‘. This usually develops after you’ve had an infection or food poisoning. In most cases it clears up within a few months with no long-term problems. Considering I’d been extremely ill with poisoning in the Philippines, this make sense to me. I was given anti inflammatories and strong pain relief medication. Lo and behold the pain never did clear up and my fatigue was at a level I was really struggling with. This also made my anxiety much worse and I felt like I was losing myself. I no longer felt like the non-stop, bubbly, fun, care-free Corinne anymore, the person that the people in my life knew and loved. Instead I was tired ALL.THE.TIME, but fiercely trying to act and maintain the qualities of the person I was before. I never spoke about feeling this way, which in hindsight I should have. (hindsight’s a great thing hey?)
I was an event coordinator, commuting to London every day, and in this profession quite often working long hours. I really tried hard to keep on top of my fibro, but I always describe it as an illness that works in a vicious cycle – stress and tiredness being two of the highest triggers for the pain. Commuting is not a walk in the park. By the time I walked into the office, I’d normally had a stressful and exhausting journey. This meant I was starting every single day on a back-burner. Most days I couldn’t get a seat and when I did people would glare at me as if to say, ‘you’re young, you should give that up for someone who deserves it more’. And do you know what? To the eye that was true, but what people didn’t know was that especially by the end of a working day, my legs would feel like they could literally give way if I took one step more. One time I passed out and collapsed OFF the train onto the platform. The doors opened and out I went. Do you want to hear the funniest part? People just walked straight over me! They were so caught up in the rush hour and getting to work that they did not have time to check on me. This was a big turning point. I could not handle London life anymore. Thinking back, I do laugh about it, mainly because I had to be driven off the platform in one of those little assistance vehicles (normally used for the elderly) which was slightly mortifying but entertaining, nonetheless.
After it became clear that my symptoms weren’t reducing and instead were gaining momentum, my GP quickly referred me to a Rheumatology consultant. There I was poked and prodded and let me tell you, it is no fun walk in the park to be diagnosed with fibro. I do consider myself extremely lucky as to how fast everything was done for me. All in the same day, I had an X-Ray, an MRI, saw the consultant which knocked out A LOT of time going to and from the hospital while obviously dealing with waiting lists too. I have my GP to thank for that. I walked out of the hospital with my diagnosis of fibromyalgia. From the onset of my first symptoms to diagnosis took roughly 6 to 7 months.
It’s important to raise my next point here – after seeing me, my consultant was certain I had fibromyalgia. Having an X-Ray and MRI was purely to ensure that I had no other underlying conditions that could be causing my symptoms. Later the results of both came back clear and was exactly what my consultant expected. It just solidified his immediate diagnosis of me.
Why he was so certain that I had fibromyalgia was due to the criteria of ‘tender points’ that need to be met to gain the diagnosis. I know this method is less common nowadays as others have been introduced but for me and the process used then, meant that pain had to be inflicted. Under the old system used on me, you needed to have widespread pain, as well as tenderness when pressure was applied to at least 11 out of 18 points on your body. I earned myself a solid 15/18 points.
My immediate responses were sadness, worry, fear and total panic because for someone who loves to be in control, I was so unprepared for this news. An incurable condition? WHAT?
To feel this way is completely normal and I’m sure others have felt exactly like this upon diagnosis too. Navigating your way with Fibromyalgia can be daunting and sometimes quite lonely. I know that I have people who are there to support me but I’m also aware that they might still never fully understand what I experience. However I am now in a good place with my condition and I started my blog www.freedomandfibromyalgia.com to document my own experiences and hopefully help others!
I had to make a few changes to get where I am today. I quit my job in London as an event coordinator to find a job more local. Not doing the commute and working long hours has made a huge difference to me. I changed my diet. I’m now vegetarian and have decreased my dairy intake. I force myself to go to bed early to ensure I get 8 hours sleep every night and took up yoga too. Other things that have helped me most of the time but not always are:
- Investing in a memory foam mattress
- CBD oil. Although it tastes disgusting, when you can’t sleep and the pain is high, I find it a necessity.
- Be patient with yourself. Accept that you’re not a superhuman. Even though I’m 25, I do not have the stamina of a 25-year-old anymore. If you need a break, give yourself one. Simple.
- Warms baths in general, but you can also buy CBD bath bombs!