I’ve mentioned Fibromyalgia a few times now, and although its not something I define myself by anymore it’s still a huge part of my journey. But what the bloody hell is it?
In short, its a condition that causes widespread pain all over the body and extreme fatigue. “fibro” for fibrous tissues such as tendons and ligaments; “my” indicating muscles; and “algia” meaning pain. Lovely jubbly.
The pain and fatigue are severe, and for some are the main symptoms they suffer with daily. It can be completely debilitating and take over day to day activities, life plans, career choices etc.
There are also a myriad of other symptoms, and to be quite honest they are WEIRD. Fibro is fundamentally a ‘silent’ illness. You cannot see most of the things that are going on and most of the time we won’t tell you about it either. We should but it’s quite hard to put into words.
These symptoms range from:
– increased sensitivity to pain: our pain receptors act differently to pain, the pain is heightened
– increased sensitivity to heat, smell, taste, bright lights and noise: this one is funky I tell ya. There’s some smells that I categorically cannot be near… we’ve had to leave restaurants before because they had some weird smelling candle. Try explaining that on your 3rd date!
– problems with mental processes: nicknamed the ‘fibro fog’. You literally feel like your brain has turned off and you can’t process the things you normally would be able to.
– muscle stiffness, aches and even swelling
– trouble sleeping: people don’t get this one because they think if you’re chronically fatigued you should sleep well. Unfortunately it doesn’t quite work like that (wish it did tho)
– Digestive problems e.g. IBS, intolerances
– Clumsiness and dizziness: I think its fair to say you can all vouch for the fact that I have this symptom on the reg #giraffey
I’m not writing this for sympathy at all. Because, as I have said before, I am most certainly through the worst so I don’t need sympathy. I am writing it simply because its a huge part of who I am. I also think that fibromyalgia does not get the recognition it needs. Most doctors don’t know how to deal with it, some don’t even believe it, many people haven’t heard of it/understand it and friends of sufferers might have no idea what their pal is going through.
I was diagnosed officially at age 17. But they believe I had it from a very young age, even from birth. Before age 17 I was tested for every illness on the planet. An MRI age 14 ain’t fun trust me. It was weird being diagnosed because I was SO happy to finally have an answer. But then they didn’t really know how to treat Fibro, it was all trial and error.
So, at 18 I was advised not to go to uni, not to stay in halls and not to go out with my friends (mainly coz everyone was getting pissed at foam parties and I fear they felt I wasn’t quite ready for that ha!). I, of course, resented this and went and did it anyway but this did not stop uni (and my early 20s) being a completely different experience and challenge for me than I hoped. I couldn’t cope with everything that was thrown at me, I was constantly ill, missed crazy amounts of classes and had to stay at home a lot of the time. Its pretty hard for people to understand this when you’re all new friends and uni is supposed to be a fun, crazy experience. But it forced me to figure out fibromyalgia. Figure out how to deal with it by myself… (when I say by myself I mean with my mum, sister and dad whose lives were also completely commandeered by this). Now I’m not saying I recommend everyone with fibromyalgia go to Sankey’s nightclub to figure it out because, actually, I was lucky to have been able to do all that, but you get the gist.
Since then it’s been 10 years – holy shit 10 years. I can now workout, I can lift some heavy bloody weight, I can run, I can go out with friends… the list is endless. And I am SO grateful. I never would have imagined the change. Hopefully 1 day the London Marathon will have a registered Fibro charity…
The end of the fibro files… for now!