Removing the Invisibility Cloak from Fibro

DISCLAIMER/PREFACE: I am not a doctor/healthcare professional. The information I am about to share is collective of my own personal research/findings from various websites and articles. If you have Fibro, much of this information will not be new news to you. My goal is to share this information in a way that is easy to understand by people without Fibro, and also to be used as a tool for people with Fibro to share with others.

When most of you read the title of this entry, you’re immediately going to think of the awesomeness that is Harry Potter. (You have good taste, by the way.) Unfortunately this post has nothing to do with Harry Potter, Hogwarts, or magic of any kind. This post is going to be mostly informational, but not to worry! I promise to make it interesting!

Thus far in my blog, I’ve mentioned how Fibromyalgia is an Invisible Illness, and that there is chronic pain involved. I’ve told you about my personal experience with said pain, but I have not explained how and why the pain occurs in the first place. Don’t worry, I’m not about to throw a bunch of medical mumbo-jumbo at your face. This isn’t a pie throwing contest (although that would be fun, too). I promise this entry will be painless (Ha) and maybe even a little fun. So, let’s get started shall we?

First, let’s start with how pain is received by a person who does not have Fibromyalgia. Typically it goes like this:

• *Contact with stimulus -- Stimuli can be mechanical (pressure, punctures and cuts) or chemical (burns). 
• **Example: Hand touches hot stove.
• *Reception -- A nerve ending senses the stimulus. 
• **Example: Nerve says, “You idiot. I guess I better send the troops to alert the brain.”
• *Transmission -- A nerve sends the signal to the central nervous system. The relay of information usually involves several neurons within the central nervous system. 
• **Example: “Charge! The skin has been infiltrated! Alert, Alert!”
• *Pain center reception -- The brain receives the information for further processing and action. 
• **Example: ”OUCH! That’s hot!”

* http://science.howstuffworks.com/environmental/life/human-biology/pain.htm
**Baylee’s Examples.

People without Fibromyalgia have what would be considered a “normal" nervous system. Their nervous system can tell the difference between an un-harmful touch and a painful touch. For example, when a non-Fibro person sits down on a chair, nerve endings in their back and buttocks are constantly shooting signals up their spine to their brain so they can feel the pressure on their buttocks from sitting in the chair. Since their brain can sense that it is not a harmful touch, it sends back a “No Pain” message that still allows us to feel the sensation of pressure on our buttocks from sitting, but it does not cause pain.

People with Fibromyalgia have what is considered an “overactive" nervous system. Many articles and doctors say our nervous system is on “Sensory Overload.” Being that the nervous system is the director of The Five Senses, (Taste, Smell, Sight, Touch, and Sound), things get interesting when all five, or even just a couple of the senses are in over-drive. Often times in certain areas of the body, un-harmful touches are interpreted as painful touches. Because of this, a simple hug or squeeze on the arm can be nearly debilitating. The best way I can personally describe it is it feels like someone poking at a bruise. My sensitive areas are the sides of my legs, calves, and arms.

In addition to the over-loaded touch-sensors, a person with Fibro may have extreme sensitivity to lights, sounds, and smells. (I personally have not experienced a heightened sense of taste, but I’m sure it happens.) Sometimes I feel like I have “pregnancy-nose.” I will smell things and ask my husband if he smells it too, and he’ll just look at me like I’m nuts. Loud, abrupt noises always make me jump, and I  prefer a darkly lit room to bright fluorescent lighting.

<Do you have Sensory Overload problems? If so, what are they?>

Another way a person with Fibromyalgia experiences pain is in their joints and muscles. This is usually referred to as “widespread pain.” Widespread pain occurs when the nervous system gets overloaded with messages of perceived pain from the nerves. When the brain gets overloaded with these messages, it can’t keep up with the “No Pain” replies that should be getting sent back down to the nerves. Instead, the brain (figuratively) throws its hands up in the air, leaving the overload of pain messages to land where they “fall.” This allows the pain messages to get sent back out into the body like an “Out of Office Reply.” Only these replies do not have a set destination; thus, widespread, sometimes randomly placed, pain. 

Over several years of research, doctors came up with eighteen (or nine pairs) of trigger points to test. In order to be diagnosed with Fibromyalgia, you must have a minimum of eleven “active” trigger points. (You also must undergo several blood tests to rule out other diseases.)

These trigger points are found in the following areas on both the left and right side of the body:

• Back of the Neck
• Elbows
• Front of the Neck
• Hips
• Lower Back
• Knees
• Upper Back
• Shoulder

To view a trigger point map, go here.

As you can see, most major junctions in the body are listed above. Not everyone with Fibro has pain in each one of these points, but as stated above, you can bet there is pain in at least eleven of these locations. This is why you often times hear someone with Fibromyalgia say, “I hurt all over.” We really do! Because each Fibro patient is different, each person has an extremely personal, customized treatment plan. If you have a good doctor, your treatment plan should be continuously evolving with your Fibro symptoms. No one day is ever the same with our trickster, Fibro. However, being in touch with your body and learning your limits definitely helps to avoid major flares.

A common misconception about Fibromyalgia is that it is a Disease. This is FALSE. Fibromyalgia is a Syndrome. What’s the difference? I thought you’d never ask! 

Highlighted below are the two qualifications Fibro does not meet, meaning it cannot be a Disease:

Disease: a morbid entity characterized usually by at least two of these criteria:

1.     Recognized etiologic agent (cause)

2.     Identifiable group of signs and symptoms

3.     Consistent anatomic alterations

Syndrome: a collection of signs and symptoms known to frequently appear together but without a known cause.

Simply put, Fibromyalgia is not what is there; it is what is not there.

Confused? Don’t worry, keep reading!

We still do not know the cause of Fibromyalgia. Many believe the development of Fibro can be attributed to a physical or emotional trauma. (I personally agree with that.) I will say, if there is one thing to be thankful for regarding Fibro, there are no “consistent anatomic alterations.” AKA: Fibro does not cause joint damage, or any other alteration to the body like an auto-immune disease would. It is literally INVISIBLE!!! No test can “find” Fibromyalgia. It is also extremely common to have other illness’ that coincide with Fibromyalgia that are visible, such as: Irritable Bowel Syndrome, Depression, Anxiety, etc. This is why in order to be diagnosed with Fibromyalgia, one must undergo several tests to rule out other diseases (many of them being auto-immune.)

Therefore, because we do not know the cause of Fibromyalgia, and it does not cause internal or external damage to the body, it cannot be a Disease. SYNDROME, SYNDROME, SYNDROME!

/steps off soapbox

Lastly, let’s talk about the word “Fibromyalgia” and why it was chosen to represent the many symptoms that encompass this chronic SYNDROME. Here’s the breakdown:

Fibro -- Fibrous Tissue (This is where the overactive nerve endings live.)
My -- Muscles (Where some of the pain is felt.)
Algia -- Pain

Pain in the fibrous tissue and muscle. Make sense? See, I told you this would be easy!

Hopefully I have been able to help you “remove the Invisibility Cloak” from Fibro for yourself or someone else!

<Are there any examples you like to use when explaining Fibromyalgia to friends/family/co-workers/strangers? If so, please share!!!>