Thoughts About Where We Are on Fibromylagia Awareness Day 2011

I recently Googled "Why do we have awareness days?" and got page after page of search results on all kinds of different awareness days.

One person said they had a calendar that featured at least one awareness event for each day of the year. Now that seems like quite a lot of causes to keep track of every year. Another person suggested that an awareness day should be: a day of action...that will focus on grass-roots activism organized by local activists. I'm not exactly sure what that means, but that sounds like a lot of action.

Truth is, besides writing this post, I'm not sure what I am supposed to be doing today on Fibromyalgia Awareness Day 2011.

With three FDA approved drugs and a whole series of drug company commercial talking about fibromyalgia, I have to question whether we need a day to make everyone aware that fibromylagia exists. Yeah, I know the point of those commercials was to sell drugs, but I think they also increased awareness and legitimized fibromyalgia. Which I guess lends credibility to the saying, "All publicity is good publicity."

Because of these drug discoveries, it seems inconceivable to me that someone in the medical profession would deny the existence of fibromylagia when there are three drugs they can prescribe to attempt to treat it.

While three drugs are a start, these drugs aren't a cure. More research and development is needed to uncover more treatments. I've read that only 30% of people living with fibromyalgia response positively to the medications used to treat it. Clearly there is more work to be done in this area.

Pinpointing what triggers fibromyalgia would help treatments advance too, not to mention lead to prevention strategies so that no one else needed to suffer daily chronic pain and fatigue.

Plus I know there is more education that needs to happen about what fibromyalgia truly is. There is emerging evidence that fibromyalgia is a brain disorder. That is why drugs like Lyrica, Cymbalta and Savella, which have an effect on the brain and nervous system, seem to help some people with fibromyalgia. Which makes me wonder if the treatment of fibromyalgia will eventually transition from rheumatologists to neurologists.

By the way, knowing that fibromyalgia is a brain disorder helps us understand why it is so difficult to treat. I've heard medical professionals say that neurological conditions present some of the biggest challenges in medicine today. Having spent time at the neurology clinic, both for myself and with my dad who had Alzheimer's disease, I have first-hand knowledge of this fact. The brain remains the last unconquered frontier in medicine. Not only is it still unclear all the things the brain does, there currently are no treatments for restoring brain function to normal once it has been altered or destroyed by illness or disease.

So I think that fibromyalgia awareness today is less about shouting "This illness is real!" and more about educating people that there is still a long way to go to successfully treat this syndrome. It is about continuing to put pressure on all the entities that fund and conduct research on fibromyalgia to keep pursuing with their efforts. I guess this also means that our cause must find a way to wrangle more resources to fund these efforts so that they produce greater results. This seems like quite a formidable task, given that there are at least 364 other worthy causes filling the calendar each and every year vying for the same limited pot of resources to make a difference for their causes too.

Which leads me to my final thought: Fibromyalgia Awareness Day is about hope. Hope that in some research lab somewhere there is a happy accident that results in the discovery of new knowledge and/or new treatments that foster better outcomes for people living with fibromyalgia today. Until that happens, I hope that someone uncovers something honest and real that can truly increase the quality of our lives while we are waiting for our medical miracle. Ultimately, I hope that people with fibromyalgia can one day regain their fullest potential, enjoy life completely and leave chronic illness behind.

I think today I am going to allow myself to daydream about that day in the future when Fibromyalgia Awareness Day is no longer on the calendar.

I'll be back tomorrow with my weekly Mission 2011 post.

Make Fibromyalgia Visible: How You Can Help

Now don't be shy; you can help spread awareness too! Even if you only have 60 seconds, there are four things you can do to spread awareness and Make Fibromyalgia Visible (courtesy of the National Fibromyalgia Association):

1. Add a Make Fibromyalgia Visible graphic to your emails and website (like the one at the top of this blog post.) Download the free logo here.
2. Become of fan of the National Fibromyalgia Association on Facebook by clicking here.
3. Take the Pledge to Care and let your name be counted among all the family members, friends and healthcare providers of people living with fibromyalgia who support the National Fibromyalgia Association's advocacy efforts. Click here to take the pledge now.
4. Show you care by making a purchase at the NFA store. Click here to preview the awareness merchandise specifically for the 2010 campaign.

Make Fibromyalgia Visible: Quick Facts About Fibromyalgia

Image by stevendepolo via Flickr

You can't make fibromyalgia visible if you don't know that fact. So here they are, the quick facts about fibromyalgia,
courtesy of the Fibromyalgia Network (www.fmnetnews.com):

Fibromyalgia affects 3 to 5 percent of the population (that means almost 1.5 million people in the United States live with fibromyalgia)

It 0ccurs in people of all ages, including children

More women are diagnosed with fibromyalgia, but men can have it too

Fibromyalgia is a condition that is chronic and long-term, but the severity of symptoms can fluctuate throughout the day

About 25% of people with fibromyalgia are unable to work due to the severity of their symptoms

The first drug specifically for fibromyalgia was approved by the FDA in 2007 and more treatments are currently under development

Make Fibromyalgia Visible: Top 10 Signs You Are Living with Fibromyalgia

Image by veganjoy via Flickr

Today is Fibromyalgia Awareness Day and I am spreading awareness through my blog and on Twitter. The theme of this year's awareness campaign is Make Fibromyalgia Visible, which got me thinking about all the ways fibromyalgia affects my day-to-day life. I started composing this Top Ten list in my head yesterday. Hopefully all the wittiest items made it out of my head and into this post...

Top Ten Signs You Are Living with Fibromyalgia

1. The first thing you do when you enter a room is look for a place to sit down.
2. You keep a rolling walker in the car, a cane by the door and a mobility scooter in the garage.
3. You find yourself frequently asking your spouse, "Please bring me the thing. You know, the whosy whatsit. Arrgh. You know what I mean. The whatchamacallit! "
4. You calculate whether you can meet a friend for coffee or see a new doctor based on your "comfortable driving distance."
5. You realize that most of your hobbies involve your television, your TiVo and your computer.
6. You only buy relaxed fit pants with pockets, comfortable t-shirts and leisure bras. You have put everything form-fitting, sexy and revealing in mothballs.
7. You made a t-shirt that says, "I'm not lazy, I'm pacing myself."
8. You walk your dog using a mobility scooter.
9. You accept that a good night's sleep means fall asleep before 6 a.m. and getting up sometime in the afternoon.
10. You don't care anymore if your family or friends believe you have fibromyalgia because all your new friends believe you because they are people living with it each and every day too.

Make Fibromyalgia Visible: Take the 'Pledge to Care'

Image by Kindreds Page via Flickr

Do you know and love me?

If you do, then I want to ask you to do something very important to me. I want you to take the National Fibromyalgia Foundation Pledge to Care on Fibromyalgia Awareness Day, TODAY, May 12, 2010. I want you to add your name to the list of people that love and support persons living with fibromyalgia each and every day.


So what do you say? Will you Pledge to Care for me? Click here to be redirected to the National Fibromyalgia Association website to add your name to their online "We Care" web page.

Thank you for your support!

Family & Friends Pledge to Care

We pledge to:

• ALWAYS STAND BESIDE LOVED ONES with fibromyalgia, and support the patients’ quest for a better quality of life.



• ACT AS AN ADVOCATE to insure that loved ones receive the best possible medical care.



• BE RESPECTFUL OF LOVED ONES’ PHYSICAL LIMITATIONS, and help—or get help—when it is needed.



• EDUCATE OTHERS about fibromyalgia and encourage them to provide people with fibromyalgia with support and understanding.



• ADVOCATE for improved treatments, expanded research and an increased awareness and acceptance of fibromyalgia.



• UNCONDITIONALLY LOVE the people in my life who have fibromyalgia.

Fibromyalgia Awareness Day 2010 Press Release: Make Fibromyalgia Visible

From the National Fibromyalgia Association website:

“Make Fibromyalgia Visible”

National Fibromyalgia Association commemorates National Fibromyalgia Awareness Day with 3rd Annual Walk of Fame and Concert at Cal State Fullerton

ANAHEIM, Calif.—(29 March 2010)—The National Fibromyalgia Association (NFA) will commemorate National Fibromyalgia Awareness Day on Saturday, May 15 at California State University Fullerton (CSUF) with free day-long activities that include a Wellness Fair, educational seminars, 1K and 5K walk.

In the evening, R&B singer and new NFA spokesperson, Tony Terry, whose wife has fibromyalgia, will perform a special concert during the closing “Lights of Hope” candle lighting ceremony. Terry will also debut a new song from the National Fibromyalgia Association dedicated especially to the over 10 million people affected by fibromyalgia in the U.S. and 3-5 percent worldwide.

“Make Fibromyalgia Visible” is the NFA’s theme for this year’s National Fibromyalgia Awareness Day, officially observed on May 12. Awareness Day is designed to increase awareness and understanding of fibromyalgia a chronic pain disorder usually characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress.

The May 15 event is co-presented by CSUF’s Fibromyalgia Research and Education Center. For sponsorship opportunities and more information, contact Karen Wiley at 714-921-0150 or kwiley@fmaware.org.

About the National Fibromyalgia Association

The National Fibromyalgia Association is a 501(c) 3 nonprofit organization headquartered in Anaheim, California whose mission is: To develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The NFA publishes FM Aware magazine, which recently went digital in 2010.

Media Contact: Corin Ramos, APR, corin@walsonpr.com
(w) 714-970-2268 or (c) 714-865-4147

My Experience of Fibromyalgia

In the spirit of National Fibromyalgia Awareness Day, I want to share with you my symptoms of fibromyalgia and what works for me so you can be aware of how this syndrome is affecting me and what I do to cope with it.

Every day I deal with:

• widespread muscle pain
• muscle spasms
• stiffness in the muscles and joints, especially in the morning
• muscle and joint aches with tender and trigger points
• numbness and tingling in the hands
  

• severe and debilitating fatigue

• sensitivity to weather and temperature changes
• sensitivity to some scents and chemical odors
• sensitivity to medications
  
• sensory overload and over stimulation, especially in crowds or noisy/busy environments
  

• insomnia
• sleep apnea
• disturbed sleep patterns
• unrefreshed sleep
  

• heart palpitations
• dizziness
• reduced tolerance for exercise
  

• chronic headaches

• memory problems
• communication difficulties
  

What Works for Me:

• Resting when needed
  
• Sleeping as well as possible at night
  
• Taking medications (over-the-counter and prescription) as needed
• Being aware of how much energy I have each day and scheduling my activities accordingly: pacing, planning, saying no, rescheduling as needed
  
• Doing something fun every day
• Making activities "fibro-friendly", i.e. gardening becomes fibro-friendly container gardening
  
• Following the Golden Guideline: Pace = Play, Push = Pay
  
• Limiting social activities outside the home to no more than once a week
  
• Making my home a quiet sanctuary
  
• Seeking help from others when needed
• Finding a balance between treating my chronic health problems and living my life; learning to live my best life despite chronic illness
  
• Finding a balance between being open to trying new things to treat my health problems and living within a budget; setting up trial periods to evaluate if something is working and stopping if I am not getting any benefits
  
• Praying
  
• Making a "NOT TO DO" list and delegating tasks I really have no business doing in my condition
  

Family & Friends: Pledge to Care About Fibromyalgia!

Family & Friends: Pledge to Care About Fibromyalgia

This is the pledge that family and friends of people living with fibromyalgia are encouraged to take at the National Fibromyalgia Association website.

We pledge to:

• ALWAYS STAND BESIDE LOVED ONES with fibromyalgia, and support the patients’ quest for a better quality of life.


• ACT AS AN ADVOCATE to insure that loved ones receive the best possible medical care.


• BE RESPECTFUL OF LOVED ONES’ PHYSICAL LIMITATIONS, and help—or get help—when it is needed.


• EDUCATE OTHERS about fibromyalgia and encourage them to provide people with fibromyalgia with support and understanding.


• ADVOCATE for improved treatments, expanded research and an increased awareness and acceptance of fibromyalgia.


• UNCONDITIONALLY LOVE the people in my life who have fibromyalgia.

>>> Are you ready to take the pledge?

Click here PLEDGE TO CARE and complete the form on the National Fibromyalgia website to show that you Pledge to Care about people living with Fibromyalgia. Your first initial, last name and state will appear at the NFA "WE CARE" web page, along with the first inital and last name of any person you wish to honor.

National Fibromyalgia Awareness Day - May 12, 2009

From the National Fibromyalgia Association website:

The theme for this year’s campaign, “Fibromyalgia Affects Everyone,” focuses on the far-reaching effects of this common, chronic pain disorder—from broken lives to the economic costs for patients and society.

• An estimated 10 million men, women and children in the United States suffer from fibromyalgia, which is characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, and fatigue.
• For those with severe symptoms, fibromyalgia can be extremely debilitating and interfere with basic daily activities.
• Total healthcare costs over 12 months are about three times higher among fibromyalgia patients compared to patients without the disorder
• Fibromyalgia costs the U.S. between $12-$14 billion each year

ABOUT AWARENESS DAY

In 1993, Tom Hennessy, the founder of RESCIND, INC. (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases), designated May 12 as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). The date was chosen to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-30s and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the first-ever School of Nursing. Awareness Day activities take place worldwide in an effort to increase awareness of chronic pain illnesses including fibromyalgia.

ABOUT THE NATIONAL FIBROMYALGIA ASSOCIATION:
The National Fibromyalgia Association is a nonprofit organization whose mission is to develop and execute programs dedicated to improving the quality of life for people with fibromyalgia. The NFA publishes a quarterly magazine, Fibromyalgia AWARE, and hosts an award-winning website at www.fmaware.org.