Why don’t we talk more?

I have noticed that many Fibromyalgia sufferers who have participated in worldwide social networks and chat sites on the internet have commented, on how little there is known about it and how few medical practitioners know about the condition and those that do know what it is, are often uncomfortable diagnosing and treating it themselves.

I wondered to myself, why isn’t there more awareness about it? Not just in the medical community, but in the wider community? Why don’t more people talk about Fibro? But in hindsight I can sort of understand why. There is an incredible lag in symptoms first appearing and an actual diagnosis. What many people with Fibro probably won’t tell a mere acquaintance on the street or even family members about is the stigma that relates to this syndrome.

To begin with the journey to getting diagnosed is long and arduous, how do you explain to your doctor that “the other day my leg hurt really bad, but yesterday it was my shoulder and today, none of those hurt its the big toe on my other foot that is really bugging me,” without sounding crazy? If you are lucky enough not to get shuffled out of the doctor’s office right there and then with good wishes your luckier than most.

If you are fortunate enough to get a doctor who is willing to investigate your numerous mysterious problems and orders you a great deal of tests, chances are they will come back relatively normal, further creating the illusion that you are, in fact, crazy!!!!

This little cat and mouse game can go on for a very long time, coupled with other nasty symptoms that you may encounter such as the FOG, when I had the fog, I really did think I was crazy because you lose your short term memory, I could remember what I had done when I was five, but had trouble remembering where I was going to once I had got out of my driveway, or what I had done earlier on in the day. I couldn’t get words out so I would stutter or get stuck on words and even worse than that when I was holding a conversation with someone I would get mid-way through a sentence and completely forget what we were talking about….awkward!

So I wonder if, in a sense, we are a little suspicious by the time we finally make it to the diagnosis finish line. Or maybe it has a little bit to do with Fibromyalgia being accused in the past as being a condition that was ‘all in your head.’ By the way there are scientific studies that prove it is a real condition. Although what is interesting is that in some weird little way some of it is ‘in your head’  because some of the symptoms, like the fog, sleep problems and the way the brain perceives pain are actually related to a chemical imbalance stemming from the brain. In your head, yes, crazy, absolutely not!