Fibromyalgia Awareness Series – Make Fibromyalgia Visible, Part 1: What is Fibromyalgia?

 

 

Each year the month of May is dedicated to Fibromyalgia awareness. This year, May 15^th is set aside for events across the nation. This year’s theme is “Make Fibromyalgia Visible”. In an effort to do just that, make fibromyalgia visible, today begins the first in a series on fibromyalgia – part 1: What is Fibromyalgia? At the end of this post you’ll find a list of the remaining four parts in this series. Thank you for joining me as we make fibromyalgia visible.

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What is fibromyalgia? According to the National Fibromyalgia Association, the technical definition is “a common and complex chronic pain disorder that affects people physically, mentally and socially.”

Fibromyalgia is considered a disorder, or syndrome, rather than a disease, because a known cause has not yet been determined, (although recent studies strongly suggest a genetic factor).

Since first hearing the word “fibromyalgia”, when my mother was diagnosed in the early ‘00s, I’ve heard much speculation as to the cause, everything from a viral infection to thyroid disorders, even cancer. But the worst, and most ridiculous, of these theories is that fibromyalgia is a psychological condition, a.k.a., “it’s all in your head.” Trust me – it is not all in your head. Fortunately, continuing research is getting us closer to a known cause; evidence shows that, along with the genetic link, the possibility of neurological malfunctions is strong. Many sources, especially earlier ones, have associated fibromyalgia with depression. My question is: how could you have this illness and not be depressed? Often fibromyalgia is wrongly associated with arthritis, because it does sometimes feel like your joints are stiff as a board, but there is actually no swelling of the joints with fibromyalgia. We are likely still years away from a conclusive cause of fibromyalgia.

No matter what the “true” definition and cause, there is one thing I can tell you with absolute certainty that fibromyalgia is: “pure living hell”.

People who’ve seen me grimace in pain inevitably ask “What’s wrong?” I have always had a difficult time hiding any pain I’m experiencing, but since first ‘getting’ fibromyalgia, it’s been downright impossible. These are well-meaning people of course, but after a while it can become frustrating.

When you tell someone you have fibromyalgia, more often than not they ask what it is. I used to go to great lengths trying to explain it, to no avail. My attempt at a definition only elicited even more confused looks. Therefore, they would skip ahead to the next question – “How could you, a ‘not-even-yet-middle-aged, healthy-looking woman’, have such a horrific illness?” This accompanied by looks of extreme pity. I appreciate the empathy, but I can’t stand pity. I’ve never been able to fully answer that question, the why of it all. I do have my own theories as to how I came to live with this illness, (which I will discuss in part 4 of this series on Saturday), but most of the time I wasn’t comfortable sharing such personal information. Even when I was, it took so long that they’d wished they’d never asked.

Eventually I figured out how to respond to these well-meaning people.

“What is fibromyalgia?”

“A chronic pain disorder.”

“How did you get it?”

“I have a few ideas, but no one knows for sure.”

“What does it feel like?”

This one I usually take a bit longer in answering.

“Imagine having the worst flu you’ve ever had.”

They’d nod their head.

I’d continue, “Now tense up every muscle in your body like this.”

Here I’d do exactly that – squeeze my fists closed, set my jaw, and completely tense up every muscle in my body, (most times this took no effort as I was already in that position).

“There is an army of fire ants directly beneath your skin continuously stabbing you with flaming knives.”

A grimace would form on their face.

“Now don’t move for about twelve hours.”

Can you imagine? I hope not.

You can find a list of symptoms at the National Fibromyalgia Association.

These are a few of the symptoms I suffer:

• Chronic all-over body pain, especially in my neck, shoulders, lower back, hips and knees
• Chronic fatigue   
• Cognitive difficulties, a.k.a., brain fog (this is the actual name of the symptom)
• Severe headaches
• Stiffness
• Dental problems
• Jaw and neck pain, (this can get to the point of debilitating)
• Vision problems, (blurriness and double vision, especially towards end of day)
• Extreme dizziness
• Horrific skin rashes (I have recurring shingles)
• Insomnia

If you think you may have fibromyalgia, if you’re living with a loved one who’s felt these symptoms, (and/or others), or know someone else that feels this way, I hope you’ll check out the National Fibromyalgia Association for more information, and I hope to see you back here tomorrow when we discuss how fibromyalgia is diagnosed.

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A Q&A is scheduled for Sunday, but you don’t have to wait until then to ask a question. This series is meant to help, so please do leave a comment and I will reply at my earliest convenience. We also appreciate any information you have that you feel may help someone. If you’re comfortable with it, please feel free to share your own story in the comments on any of the posts in this series.

Meanwhile, I appreciate you spreading the word – via your own blog, forums, word of mouth, Facebook, Twitter, (use #fibromyalgia hashtag and any others you feel appropriate) – however you like.

Posts to come:

• Part 2, Thursday, May 13^th: How is fibromyalgia diagnosed?
• Part 3, Friday, May 14^th: How is fibromyalgia treated?
• Part 4, Saturday, May 15^th, Fibromyalgia Awareness Events Day: My story – how I came to be diagnosed with fibromyalgia.
• Part 5, Sunday, May 16^th: What you can do to obtain a diagnosis, (whether it’s fibromyalgia or not). Series review and Q&A.