2 Sides of the Coin

Today is like any other rainy Saturday. I’m just sitting hear playing around on the net while trying to distract myself as my fibro pain remains at bay. However, I know that any second now the pain is going to hit above a level 7. Oh boy, what fun! So what do I do but torture myself by reading articles on FMS. Yeah I know- I’m smart.

However, I found an article that caused me to wonder. Turns out that the American Chronic Pain Association (ACPA) and Forest Laboratories Inc. just published some interesting results from their recent surveys- “Two Takes on Fibro: Public Perceptions and Private Realities” – designed to gather views about the condition from the general public and fibromyalgia patients themselves. 1,022 adults from the general public and 1,215 fibromyalgia patients were questioned as part of the studies. (via)

The results fascinate me because I don’t think that I’ve ever asked many of my friends about their perception of FMS or how I deal with it. According to the surveys, this is not uncommon. In fact, may of us feel that others see us as weak- hence why we hide our illness from some. The results show that the general public see people with FMS as courageous- a surprising 41% of them. And, only 17% of FMS patients feel that this is the case.

With me, it depends on who I’m calling the “general public”. People who know me personally who see my ups and downs- sure, I believe that they see me as courageous. However, those people who do not understand or worse yet, don’t even believe the existence of FMS- I think they only see my life struggles as failure. Makes me wonder just how do my friends see my illness. How does my family? My co-workers?

The surveys also showed the impact that FMS has on our lives. 

Career and Work

• 60% of fibromyalgia patients said they take more personal days or sick days.
• 70% said they have trouble completing work-related tasks.
• 56% reported that their personal income has declined due to their symptoms.
• 61% disclosed that their work life was more difficult due to fibromyalgia.

Intimacy and Romance

• 64% of fibromyalgia patients reported intimacy difficulties.
• More men (56%) than women (48%) found it difficult to be physically intimate with a partner.
• 15% of women and 25% of men reported not being able to sleep in the same bed as their partner during a fibromyalgia flare up.

Everyday Activities

• 71% of fibromyalgia patients disclosed having difficulty cleaning, vacuuming or doing yard work.
• 58% reported difficulty taking out the garbage or carrying groceries.

I wonder if I took this survey, how I would answer. My life has so significantly changed since my FMS onset, that I really don’t see difficulty with work or daily tasks. Some activities I just don’t do anymore. Like yard work- why bother when I can be out having fun on good days.

So I ask you friends, family and strangers-

How do you see people who have fibromyalgia?

The National Fibromyalgia Association goes big on social media

n27225676432_9769I have been a member of the National Fibromyalgia Association for some time now. They are a wonderful organization to gain insight and find resources.

Please take a minute of your time to watch this short video from Lynne Matallana, president and founder of the National Fibromyalgia Association:

Or, you can read the email I received from them:

“The National Fibromyalgia Association launches campaign to reach
10,000 Facebook Fans by October 1.

ANAHEIM, Calif. (Aug. 3, 2009)—The National Fibromyalgia (NFA) has launched a campaign to get 10,000 “fans” on their Facebook Page by October 1, 2009. (A Facebook Page is an organization’s public profile that allows them to share news and announcements with Facebook users. “Fans” are Facebook users who follow the organization’s posts and are able to share them with their own network.)

The campaign, called “10,000 for 10 Million,” refers to the 10 million people in the U.S. who are suffering with fibromyalgia, the complex chronic pain disorder usually characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress.

“10,000 for 10 Million” is the NFA’s first major social media campaign on Facebook, and aims to raise awareness of fibromyalgia and the National Fibromyalgia Association through the popular social networking site which attracts over 90 million visitors per month.

Lynne Matallana, president and founder of the National Fibromyalgia Association, admits that with just two months to reach their target goal of 10,000, the campaign is ambitious. However, the need to bring awareness, help and hope to those suffering with fibromyalgia is even greater.

“We want to let as many people as possible know about fibromyalgia and the NFA, and Facebook is one of the most powerful ways to do that,” explains Matallana. “We also want to empower the fans to share this information with their friends and family members. It takes just one or a few clicks on your keyboard to become a fan of the NFA’s Fan Page or to share the page with your Facebook friends, but those few clicks go a long way to show support for those 10 million people suffering with this disorder.”

When I logged on to Facebook today, they are less than 1,000 fans away from their goal of “10,000 for 10 million” campaign!

Let’s help them reach their goal!
You can reach The National Fibromyalgia Association at www.fmaware.org to become a member of the organization.

To become a “fan” of the NFA’s Facebook Fan Page, go to: http://www.thefibromyalgiaassociation.org/ and click on the Facebook icon. (NOTE: New Facebook users must first sign up on the Facebook homepage before accessing pages.)
or click on here

The sky is the limit on where these social connections can go!

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