What Fibromyalgia feels like

At first I didn’t know how I would explain to all of my family and friends what the Rheumatologist had diagnosed me with, I was in a quandary. What exactly was Fibromyalgia, how could I easily explain that I had a mysterious unheard of syndrome, that even I, at the time knew nothing about, how could I tell people easily what it was like living with it? How could I make others understand what I had gone through (almost) silently for over a decade with, and thinking for a while there that I was crazy? Then it hit me:

 Imagine that you are in a small room, the television volume is turned on full, there is also a CD player next to the TV, playing rock music on full volume too; throw in a blender, a beeping alarm clock and even a ringing telephone, what have you got? Chaos.

Basically each of these noisy devices relates to Fibro symptoms, the noise is too much to bear, and you desperately want it to stop. So you ask family and friends to come into the room to help make the noise stop – the only trouble is that no one else can hear the loud commotion. “I can’t hear any noise, there isn’t anything wrong – you must be hearing things,” they reply.

Not satisfied with that you go to an electrician, surely a professional will be able to hear that racket and put a stop to it, so off you go and find an electrician who does a whole lot of testing on all of the appliances, but he says they are working perfectly, and the truth is that he can’t hear the noise  either, so you find another electrician and another, they poke and prod your appliances and test after test comes back as being in perfect working condition, you get a few suggestions from helpful electricians along the way – like maybe you could wear ear plugs to drown out any noise or it may help imagining that the noise isn’t there, but at the end of the day, frustrated you realise that there is nobody out there who can help make that noise stop, because they don’t hear it, so what do you do?

It’s simple really, you learn to live with it, you get good at pretending that it’s not there when others are around, even family and friends don’t know that all you hear all day and night is loud obnoxious sounds because you got so good at hiding them, after all you have given up mentioning the sounds because what’s the use, they can’t understand or help you out anyway.

Imagine living like that for a decade or more, you try to carry on with a normal life and do things like others around you are doing, but that damn noise just gets too loud and ruins everything. Then one day you meet up with a really experienced Technician, you are dubious at first, you mention that the television is stuck on full volume and no matter what you do you can’t seem to shut off that silly blender, to your surprise the technician nods and says, “Yes, I see, and I bet the CD player, telephone and alarm clock are bothering you a whole lot too, I know what the problem is.”

You do a double take, finally someone who understands all of the problems you are having and right then and there finally you realise that you are not crazy, just because lots of others couldn’t hear the noise doesn’t mean the noise wasn’t there all along.

The ‘technician’ or in the real context a Rheumatologist diagnoses you with Fibromyalgia and you are put on medication - it is like the power box switch has been turned off and suddenly all of that noise is quieter. I won’t lie to you it is the strangest sensation, try turning on a whole heap of appliances in your home for a while then suddenly hitting the mains switch and you will get a glimpse into how eerily ‘quiet’ it becomes, that is what it is like when suddenly after years and years the pain and symptoms of Fibro decreases dramatically.

That is what having Fibro is like, you feel some things - like pain and stiffness all over and experience nasty symptoms that nobody else can see like Fibro Fog and IBS, you look fine, test results say you are fine BUT you are not fine! The main point of this story and the most important thing is just because others can’t see or comprehend the pain and symptoms you are feeling does not mean they are imaginary.