My journey to diagnosis... and why diagnosis is a good thing
Updated: Jun 5
Firstly, take a deep breath. Diagnosis means you're one step closer to understanding what is happening with your body. And that's a good thing. It might have taken you a long time to get to this point but you are here and you now have a clear path forward; learning, educating and understanding yourself. Up until now, what's been happening to you has been a guessing game, a lack of clarity, maybe self doubt? anxiety? paranoia? Honey, I've been there and I am with you for this next step forward.
Gaining a diagnosis can take years. Yes YEARS! I'm overwhelmed at the amount of messages I've already had since starting this blog, and one thing that consistently comes up in conversation is the diagnosis process, so I wanted to share my experience with you, and hopefully provide some sort of self security that you will figure things out, you will learn to live alongside your condition rather than let it control you, but please believe me when I say, you need to be patient with yourself.
So, 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 I'll 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.
The exact cause of fibromyalgia is unknown, but in many cases, the condition appears to be triggered by a physically or emotionally stressful event. At this point, it's important to mention that two fundamental things happened to me on this trip which led to my development of fibromyalgia;
I got severely ill whilst in the Phillipines 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
Needless to say, these two things had a huge impact on me.
Fast forward a few months and I'm back home, and still suffering from my symptoms but now the intensity was much higher and lasting longer periods of time. After a few visits to my GP, they suspected I had developed 'reactive arthritis' - it usually develops after you've had an infection/or food poisoning, and in most cases, it clears up within a few months and causes no long-term problems. Considering I'd been extremely ill with poisoning in the Phillipines, this did make sense.... so they gave me anti inflammatories and strong pain relief medication, but low 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 a bit. I didn't feel like the non-stop, bubbly, fun, care-free, Corinne anymore, that the people in my life knew and loved, instead I was tired ALL.THE.TIME. but fiercely tried to act and maintain the qualities of the person I was before, and I never spoke about feeling this way, which now with hindsight, I should of. (hindsights a great thing hey?).
Friends and family of mine reading this will probably think, 'she never said a word about that', and I know I didn't, I thought admitting that I had changed would make it concrete and final somehow, when really I should have just talked to the people around me so they could understand. Us spoonies want to raise awareness of fibromyalgia; so the first thing we need to accept is that we need to talk about it. The physical and emotional effects of it. Because there are plenty. I'm speaking now, but I haven't been for the past 3 years, and what hit me recently which spurred me on to start this blog is that, if I'm not speaking about it, then others probably aren't too and we truly need to change that if we want our condition to be more vastly understood.
Anyway (I got sidetracked). After it became clear that my symptoms weren't reducing and instead were actually gaining momentum, my GP quickly got me referred to a rheumatology consultant. There, I was poked and prodded, let me tell you, it is no fun walk in the park to be diagnosed with fibro, but 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 and saw the consultant, which knocked out A LOT of time going to and fro' to the hospital and obviously dealing with waiting lists. For that, I do have my GP to thank for. That same day I walked out the hospital with my diagnosis of fibromyalgia. From my first symptoms to diagnosis, took roughly 6-7 months.
It's important to raise my next point here - after seeing me, my consultant was certain I had fibromyalgia, so organising an X-Ray and MRI was purely to prove there was nothing else underlying going on. Both came back clear (at a later date), but this is exactly what my consultant expected, and just solidified his immediate diagnosis of me.
Why he was so certain that I had fibromyalgia was due to the criteria of 'pain points', that needed to be met in order to gain the diagnosis. Remember me saying it's no fun? This method is less common nowadays as other methods have been introduced, but for me, and the process used then, meant that pain had to be inflicted. Under the old system, and the one 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.
Now, this is me talking from hindsight again, and I wish I could tell my then self to not have gone into panic mode, but I did and I can't change that now but I can help others, which is why I say this; Diagnosis is a good thing, a great thing actually.
Sure, 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 too upon diagnosis. But looking back now, I wish I had celebrated it. A diagnosis means clarity, (a slightly blurry one with chronic illnesses but still), it was not 'all in your head', you are not alone - others have gone through the same, and the pain you were feeling was REAL! And now you can focus on controlling it, instead of it controlling you. You have an answer, and that is GREAT. Is it going to be a bumpy road? yes. BUT it is your own road, and when you embrace that, you can face it head on.
I'm happy to write that I've acknowledged that fibromyalgia did change me, but now I have a handle on my own condition, I do feel a lot like my old self again (albeit a few alterations!), one positive being that I'm a hell of a lot more resilient.
If you'd be happy to share your diagnosis story or want some advice, please reach out and contact me!
Note: I attended a 6 week Education Programme for Patients which provides tools and techniques to help you take control of your health and manage your condition better on a daily basis. I found it extremely useful, and I would recommend doing this if you are offered it after diagnosis. If you are not automatically offered it, then I would recommend discussing it at a follow up GP appointment.