At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

invisible

Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

Related articles:

What’s the Deal with Fibromyalgia?

This piece has been re-blogged from ProHealth and authored by Sue Ingebretson (www.RebuildingWellness.com).

Have you ever been asked, “So, what’s the deal with fibromyalgia? What is fibro, really?”

When you’re asked, what do you say? Do you have a clear, concise spiel that gives the facts or a printed list with need-to-know bullet points?

Nope, I don’t either.

Sometimes when I’m asked, I’m in the middle of doing something else. It takes me a moment to switch gears into educator mode. Other times, I feel that the person asking the question doesn’t really want to know facts and figures. There’s more going on than what meets the eye.

Our answers about our personal health challenges really depend on who is asking. And, our answers change based on how they ask.

So, I have a suggestion for you.

Print out the following letter. Keep copies handy for the next time you’re asked questions about fibromyalgia in general, or even about your personal health challenges. This letter covers all the bases, yet gets some very important – and personal – points across in a non-technical and relatable way.

I hope you find it useful, and if so – please share!

You can download a printable copy of the letter HERE.

Fibromyalgia?  Because you asked…

Dear Concerned,

You’ve recently asked me about fibromyalgia and I’m sure you’re wondering what all the hype is about. While most people have heard of it by now, that doesn’t mean they know what it is. There’s a lot of conflicting information out there and it can be confusing.

After all, if everything you know about fibromyalgia comes from what you see on TV, you might believe I should be out rowing a canoe, gardening, or opening my own bakery and sweets shop. But, instead, you see me not feeling well and not participating in activities that are too taxing or stressful.

To clarify my response, I’m providing it in this written format. It’s my way of making sure I don’t leave out anything important.

Here’s what you need to know…

Health conditions in general, are classified as either diseases or syndromes. Diseases have a specific, definable, biological cause and have a specific set of symptoms. Health conditions that have no definable biological cause and exhibit a variety of symptoms are categorized as syndromes.

Fibromyalgia, therefore, is categorized as a syndrome as are multiple sclerosis, rheumatoid arthritis, migraines, and hundreds of other chronic health challenges. Fibromyalgia likely affects about 10 million Americans (mostly women) and the numbers globally continue to rise.

Now that I’ve covered some fundamentals, here are five more things that I think are important for you to know about fibromyalgia as well as about how fibromyalgia affects me.

#1 – Fibromyalgia is actually a systemic health concern. That means multiple systems of the body are compromised and may experience dysfunction. Many of us exhibit symptoms related to the musculoskeletal, nervous, respiratory, digestive, cardiovascular, immune, urinary, endocrine systems and more.

We’re all different. Some fibrofolk experience symptoms that relate to more than one system (or systems) than others. For example, some may experience frequent digestive dysfunction issues and rarely experience cardiovascular issues, etc. This varies widely.

The most dominant symptoms that we do share, however, are:

  1. Chronic widespread body pain that varies in type and intensity day by day (muscles, joints, headaches/migraines, etc.)
  2. Fatigue (this doesn’t mean simply tired – it means knocked down, dragged out, run-over-by-a-truck exhausted feeling that lasts for days, weeks, or much longer)
  3. Sleep disturbances (difficulties in falling asleep or staying asleep – also, not feeling rested even after sleep)
  4. Concentration, memory, and cognitive dysfunction issues (grasping for words, forgetfulness, difficulty in completing tasks, etc.). This is oftentimes referred to as fibrofog.

There’s a plethora of other symptoms, too. Digestive issues are very common as are anxiety and mood issues, balance and coordination challenges, weight management issues, whole body stiffness, PMS, inability to regulate body temperature and more.

While there are far too many symptoms to list here, the top four listed above are the biggies. Mine vary from day-to-day and while sometimes I feel some more than others, they’re all usually lurking under the surface.

I’d like to say a quick word, here, about depression. As you can imagine, dealing with chronic and relentless pain (and more) leaves its mark. It can leave a person feeling frustrated at best and potentially depressed at worst. Depression can especially develop for those who feel overwhelmed, unsupported, and hopeless about their health circumstances.

Therefore (non-clinical) depression can result from all of the factors listed above. It’s not the cause of the factors listed above. This distinction matters for reasons of establishing a diagnosis, a future prognosis, and potential treatment(s) for existing depression.

#2 – No, I didn’t “do” anything to cause fibromyalgia. There are multiple reasons that fibromyalgia can develop and it’s never just one thing. It takes a combination of factors and some of the most likely include:

  • A compromised digestive system* (contributed to by food sensitivities, stress, processed foods, diets and more),
  • A family history of immune system dysfunction and/or allergies.
  • Infection(s).
  • A traumatic physical event or injury (includes surgeries).
  • A traumatic stressful/emotional event.
  • Vitamin/nutrient deficiencies (*can be contributed to by a compromised digestive system).
  • Environmental exposures to toxins (both internal and external).
  • Multiple chronic infections leading to repeated use of antibiotics, steroids, or corticosteroids or non-steroidal anti-inflammatory medications.
  • Dental issues.

Also, any number of the above factors can lead to:

  • Whole body inflammation.
  • Chronic yeast and candida issues.
  • Compromised adrenal, thyroid, and hormone regulation.

These things set the stage for dysfunctions in multiple systems of the body. That’s why there’s such a wide variety of symptoms.

#3 – It’s important to understand that fibromyalgia and my symptoms are unpredictable. I’d love to “know” how I’ll feel tomorrow or even next week, but I simply don’t. Sometimes I can do something relatively minor (like fixing dinner for my family) and feel awful afterward. Other times, I can participate in something major and feel fine.

But, here’s the important part. If I can’t predict my own reactions to foods, places, events, circumstances, etc. – I certainly don’t expect you to.

I appreciate your concern when you ask if I “should” do this or that, but it’s my choice. I get to decide what I will or won’t choose to do. And, I’ll deal with the consequences of my choices. Additionally, I don’t expect you to know what to do, what to say, or even how to help me. It’s my choice and responsibility when (or if) to ask for help, and to share how I’d like to be helped.

#4 – In a nutshell, it’s important to grasp that having fibromyalgia makes me hyper-sensitive. Things that don’t pinch, hurt, or even annoy most people might drive me crazy. A heavy necklace or a large purse can feel like I’ve got an anvil pulling on my neck and shoulders. A simple touch or even an embrace can leave me feeling as if I’d been squeezed in a vice.

Sounds, lights, smells, tastes, and touches can be unusually amplified. Please respect (and withhold judgment) when I express that something may be too loud, too bright, to stinky, too spicy, or too painful.

I’m not trying to be difficult.

I’m simply trying to share my feelings and experiences.

And, along with being hyper-sensitive, there are some things I can’t control. While I agree it may look funny, it’s not humorous to me when I startle easily, jump at loud noises, or shriek when unexpectedly alarmed. It’s as simple as a reflex and I can’t change that.

It’s important to note that due to this hyper-aware state, stress is also amplified. Therefore, avoiding stress and dealing with the stress I can’t avoid has become my priority. For me, stress isn’t a simple fact of life to accept. Its negative effects are far-reaching and potentially long-lasting.

It is, therefore, an important health mission for me to participate in relaxation activities and care for my body physically, emotionally, and spiritually.

#5 – I appreciate your thoughtful suggestions for how to manage my health challenges, but keep in mind that above all, I’m doing the best I can.

Your helpful advice will be taken into consideration. If I apply your suggestion to my current protocol of treatments, I’ll do it because I feel it could benefit my healing process. If I don’t take your suggestion, it might be for any number of reasons. I may have already tried it, I may have researched or read something to the contrary, I may not have the resources to put it into practice, or I may feel it would conflict with something else I’m already doing.

While I may or may not have the time or energy to go into all this detail with you, please know that I value your concern. If there’s anything that I’ve learned, I know that there’s no single pill, practice, or program that will “fix” fibromyalgia. If there were, I’d already be taking it, doing it, or be devoted to learning it.

Which is exactly what I’m doing now.

I’m learning as I go.

One of the hardest lessons I’ve had to learn is how to express myself. Although it’s difficult, here are a few thoughts on that topic:

Please don’t….

  • Tell me that you know how I feel. Even if you have fibromyalgia and/or any other health challenge, we’re all different and experience our conditions differently.
  • Tell me how I should feel. That’s up to me.
  • Tell me that so-and-so drank this “magic juice” and got better. There are as many treatments that don’t work as ones that do. I’m on the journey to discover this process on my own.
  • Compare me to siblings, friends, colleagues, who don’t have health challenges or even those who do. As I’ve stated, I’m on my own path to wellness.

Please do….

  • Tell me that you’re thinking of me. Even if I’m not terribly responsive or talkative it’s wonderful to know that you’re supportive of me and of my health.
  • Send me books, magazines, cards, emails, notes, etc. that express that you’re there. Chronic illness can be SO isolating and every kind word from you matters to me.
  • Ask if there’s anything specific that I need. Even if I say “no” 50 times out of 51, that one time that I really need something may mean the world to me.
  • Continue to search for helpful treatments, protocols, nutrients, supplements, and practices. Just because I don’t always implement your suggestions doesn’t mean I don’t appreciate the help. I’m always open to and encouraged by current news and information.

In summary:

  • Remember that my body may bruise like a tender peach, but my will is strong as iron.
  • What I’m really trying to say is that inside, I’m still the same me.
  • I’m just trying to find my way as best I can.
  • I’d love it if you’d come along with me on this unpredictable journey.

               Not behind me pushing,

               Not in front of me pulling,

               But beside me – guiding, encouraging, nurturing and supporting

Are you with me?

_________________________

Sue-IngebretsonSue Ingebretson (www.RebuildingWellness.com) is an author, speaker, certified holistic health care practitioner and the director of program development for the Fibromyalgia and Chronic Pain Center at California State University, Fullerton. She is also a Patient Advocate/Fibromyalgia Expert for the Alliance Health website and a Fibromyalgia writer for the ProHealth website community.

Her #1 Amazon best-selling chronic illness book, FibroWHYalgia, details her own journey from chronic illness to chronic wellness. She is also the creator of the FibroFrog™– a therapeutic stress-relieving tool which provides powerful healing benefits with fun and whimsy.

Would you like to find out more about the effects of STRESS on your body? Download Sue’s free Is Stress Making You Sick? guide and discover your own Stress Profile by taking the surveys provided in this detailed 23-page report.

HAPPY FIBRO-MAGIC AWARENESS DAY

Today is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia Awareness Day.

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic
Immunological and Neurological Diseases). Mr Hennessy was based in the US but understood that it needed to be
an International event.

May 12th was chosen as it coincided with the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.

FN 3Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910. Even though Nightingale was suffering from a debilitating illness, she still managed to become the founder of the world’s first School of Nursing. Her previous work, and that after she became ill, led to her being the first women to get the British Order of Merit.

Although the term, FIBROMYALGIA was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.

(Job 7:3-4; 30:16-17 – NLT)

This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain.”

Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.

Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years, fibromyalgia was thought to be a psychiatric or psychosomatic disorder. 

aware

Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.

Fortunately, this century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)

Until very recently, May 12 Awareness efforts have largely been grassroots and undertaken by individuals or individual organizations. Due to the mandates of these organisations, the awareness efforts have, for the most part, focused on only one of the illnesses. For example; this site, together with my Facebook page, Twitter and LinkedIn profile, as well as LIVING WELL with FIBROMYALGIA has been focused on Fibromyalgia (obviously!).

  • From the beginning in 1993, various ME/CFS organizations were behind the idea. They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.
  • Efforts by Fibromyalgia organizations took a little longer. National FM efforts in the United States started in 1997 with the National Fibromyalgia Association (NFA).
  • In Canada, through the efforts of the then newly founded (June 1993) National ME/FM Action Network, May 12th has been an Awareness Day since 1994.
  • Some organizations have an International ME/CFS Awareness Day (May 12), others have a week still others, such as the newly formed European ME Alliance which includes 9 European countries, use the whole month of May.

Hopefully, one day this history of fibromyalgia will be just that – past history.

MILESTONES IN FIBROMYALGIC HISTORY

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • balfour1816 – Doctor William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
  • 1824 – Doctor Balfour described tender points.
  • 1904 – Sir William Gowers (right) coined the term fibrositis (literally meaning  inflammation of fibres) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Doctor Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association recognised fibromyalgia as a real physical condition.
  • pic 21990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes.  The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neuro-hormonal mechanisms with central sensitization was developed.
  • 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia.  This was the first drug ever to receive FDA approval for fibromyalgia.  (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)

My Jump Up & Down Moment

tumblr_lneruwMdFm1qeyzcbI have been so busy that I have forgotten to tell you all about my most recent excitement…as in, I was literally like one of those wind-up toys that manically spins one way then spins the other.

Then, of course, I had to sit down.

AAMI Park in Melbourne is going to light up purple for International Fibromyalgia Awareness Day.

Finally, some-one said yes. It’s a starting point…and we have a running jump for next year.

AAMI poster

Fundraising will start soon so we can actually have a ‘real’ event (if you can offer any type of sponsorship or donations, please contact me at fibromodem@fibromodem.com)

And now we have a very low-budget picnic to organise quickly…

Update 020514-2

P.S. I also got an email from Australia’s Prime Minister and Melbourne’s Lord Mayor – more jumping up and down!

Share the (Thunder) Clap!

May12thMay 12th – International ME/CFS & FM Awareness Day is running this year’s Thunder Clap – an initiative in which I would be honoured if you chose to get involved.

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (and we have so the message will get out there whatever happens!), Thunderclap will share the same message on EVERY supporters’ Twitter, Tumblr and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook, Tumblr and Twitter that cannot be ignored!

For example:

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What is THIS Thunderclap?

290414-1

This is our day to raise awareness around the world. This year marks the 22nd anniversary. We are real people, with a real physical illness and we need to raise awareness. Awareness will ultimately translate to more funding, research and a solution.

The message will be published on every supporters’ Facebook page, Tumblr and/or Twitter feed WHEN we reach the goal number.

What Can I do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach with Twitter, Tumblr or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

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3. You can write a blog post to let all your followers know about the project.

Our goal: to no longer be ignored! Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

It is the dream of our patient community to erase the stigma and finally be taken seriously by friends, family, researchers, government and people in our local communities. May 12th Awareness Day is a chance for the millions of patients worldwide suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (FM) to be seen and heard!

These illnesses are real; the people are real; and they need help NOW!

With awareness, will come action! Our community is desperately in need of treatment facilities and funding is required to support research and our scientists.  A successful May 12th will bring many rewards for years to come. These activities will not only benefit us today, but they will be an investment in our future.

To quote Helen Keller – “Alone we can do so little; together we can do so much.”

 

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

How to be Aware in 2014

So, you’d like to get involved in International Fibromyalgia Awareness Day but you don’t know how, where or what?

Here’s a collection of events and activities:

Light Up the Night (online)

Light Up

The challenge (and we NEED your help!) is to light up as many buildings as possible with any of the 3 colours used on International Awareness Day (May 12th) – blue, purple or green.

Change one light bulb or… light up your house like a Christmas tree!!!
Light up your own home or… the Empire State Building!
Radiate a single beam or… run a competition in your street!
It’s up to you.

With the awareness we WILL create, we will all be winners but THE winner will be the country with the most photos in each of these categories:

  1. Number of Public Buildings/Places
  2. Number of Private Residences

Of course, we’ll need photos of your buildings aglow so photos should be to sent to May Twelfth at info@may12th.org. All pictures must be emailed by May 19th to be included. Please include information about where the photo was taken (ie town, region and country)

Calgary International Awareness Day Educational Event for Myalgic Encephalomyelitis/CFS, Fibromyalgia & MCS  (Alberta, Canada)

Every year in May, celebrations are held all over the world by patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia and Multiple Chemical Sensitivity and their supporters.   The celebration is also a day of advocacy and awareness.  The 2014 Calgary May 4th program will again use technology to allow the best speakers to present exciting information about treatment advances by two-way weblink. The audience will be able to hear and interact with the speakers in real-time.

This presentation will be recorded so that if you are unable to attend or if you wish to view it again, you will receive a link to the recording and will be able to watch it in entirety as many times as you like. The Speakers are:

  • Craig Young
  • Staci Stevens
  • Jarred Younger

Fibromyalgia, CFS & ME Gold Coast Fibromyalgia Awareness Day Picnic (Queensland, Australia)

FibroMummies Butterfly Tea Party (Lincolnshire, England)

Fifth Annual Fibromyalgia Awareness Dinner (Indiana, USA)

The fifth Annual Fibromyalgia Awareness Dinner will be held on Thursday, May 8th at Great Oaks Banquet Hall in Cedar Lake, Indiana. Tickets are on sale now through May 1st for just $17 which includes a family-style, all-you-can-eat chicken/fish dinner with French fries, coleslaw, salad, rolls, coffee, soda, and water. Tax and gratuity are also included. A cash bar will also be available. Cash and checks are accepted. Credit card payments are also accepted for an additional fee of $1 per ticket.

Jammin’ in our Jim Jams (online)

JammingDawn, Rob & Amy are jamming in their jim jams on Sunday 11th May!

There are 3 ways to support them:

 

  1. Donate on http://www.justgiving.com/dawn-Derraven
  2. Buy some jam – email Dawn @ fibromyalgia.dee@hotmail.co.uk
  3. If you aren’t able to donate, please visit and SHARE Dawn’s blog: Fibromyalgia-dee.blogspot.co.uk/

 

May 12 Blog Bomb (online)

Blog BombWrite a post describing your FM story, and how the condition has impacted on your ability to function in society (or another related topic)……

Schedule your post to be published May 12th using the hashtag #May12BlogBomb for sharing, so that these posts can then be found and shared widely on FB, Twitter, Google etc. (Just add the tag to your FB and Twitter posts promoting your blog post so that others can find it more easily.)

Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) and Fibromyalgia Awareness Family Day Picnic (Tasmania, Australia)

sorry - no link

13th Annual Michigan Fibromyalgia Awareness Day Conference (Michigan, USA)

Featured speakers will present information on understanding and managing fibromyalgia, and how to overcome the daily challenges of life with fibromyalgia.  A strong emphasis will be placed on diet and holistic therapies.

Thunderclap (online)

Join May Twelfth in sharing this message together at the same time – automatically: Tell the world! Today is May 12th International Awareness Day for ME/CFS & FM. #may12th #mecfs #fibro #spoonies #fmhttp://thndr.it/1hUCsUn

Walk to Cure FM, 1k-Fun Walk/5K Run (Ohio, USA)

Walk and run as well as Door Prizes, Raffles, Tee-shirts, Brunch, Awards Ceremony, and Entertainment!

Zumbathon for Fibromyalgia (Indiana, USA)

 

If none of these activities appeal to you, you can always share this information with others on Facebook, Twitter, Google, etc… or you could always wear a Fibromyalgia Awareness top? (Can’t blame a girl for trying!)
Int Fibro

 

 

A Voice for Fibromyalgia?

Leah Tyler

This has been re-blogged from Leah Tyler at the Chronicles of Fibromyalgia:

Dear Pfizer,

Last night one of your commercials for Lyrica came on TV. In this ad a woman claimed her overactive nerves, caused by Fibromyalgia, gave her pain and kept her from doing the things she wanted to do in life. Obviously she went on to tout the praises of your drug, but I wasn’t listening. Instead, I was hung-up, obsessing, and ranting and raving over the use of one word, wanted. Fibromyalgia kept her from doing the things she wanted to do in life? Like rock climbing or going to an Eminem concert? Because this Fibromyalgia patient over here experienced a completely different reality. Not only did Fibromyalgia keep me from doing the things Iwanted to do, it also kept me from doing the things I had to do, like washing my hair and going to work. And I know a hell of a lot more patients sing my song than Miss Wanted To Do’s.

I have added this video as we don’t have ads for prescription drugs on TV (and I’m not sure about all other countries):

Needless to say, as a nine year veteran of Fibromyalgia, I found this phrasing offensive. In short, here’s my beef; You’re $opping up the dough off a disease that isn’t technically a disease, because nobody knows what causes it. So it wouldn’t hurt too much to throw us patients a bone, would it? Because we’re in a pickle and sure could use your help. Not only is Fibromyalgia the leading pain condition diagnosed in the USA, patient symptoms run the gamut, with a range of fluctuating severity. It affects everyone differently, and to make it even more convoluted, the treatments do, too. Please understand I am an educated consumer. In no way am I holding any pharmaceutical company responsible for sourcing the cause and cure of this mysterious ailment. And I’m well aware of how expensive the process of developing a drug, testing it, and bring it to market actually is. I’m even hip to the efforts your company invests in regarding Fibromyalgia awareness and cause advancement. But maybe it’s because of these reasons I’m actually pissed at you.

I know you pay a pretty premium for the advertising, but as of right now, Pfizer, you are the voice of our illness. Countless patients have lost their ability to function from Fibromyalgia, along with their jobs, families, friends and homes. Fibromyalgia is a devastating reality hotly debated in the crossroads of modern and psychiatric medicine, yet nobody can deny the number of patients is only growing larger. As the only other source of the word “Fibromyalgia” to many people in our society, other than ‘strange Aunt Sally who doesn’t like to leave her house’, you would do the aforementioned injustice a world of good if the chick on the Lyrica commercial said had. ‘Fibromyalgia kept me from doing the things I had to do in life.’ It would give millions of people some much-needed validation.

Thank you for your consideration,

Leah Tyler

I’m probably looking at this from a different point of view than most: I have been trying to encourage all of us, via this site, Facebook and Twitter, to become a voice for Fibromyalgia by sending emails, sharing posts or tweeting; and, then, on May 12th, lighting up their home with purple bulbs (this part is the only bit that may require some physical exertion). (Don’t know what I’m talking about? Check this out.) However, due to the very nature of our condition, it is so difficult to get many of us to actually do any of this…so, yes, it is sad that, despite how hard some of us try, Lyrica ads are the only voice for us!

 

Int Fibro

LIGHT UP the NIGHT

Have you been following my Facebook page?

Have you been checking out my tweets?

I am taking up the LIGHT UP the NIGHT Challenge.

The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue, PURPLE or green.

light up the night

Of course, I’m supporting going all out for PURPLE!

We’ll all be winners but there will be bragging rights awarded to the country with the most photos in each of these categories:
1. # of Public Buildings/Places
2. # of Private Residences

What started as a friendly challenge between Canada and Northern Ireland has now grown to be international. This will be the first time Australia has competed, and I have humbly taken the opportunity to co-ordinate on our behalf. All details are available on the Event page.

The contest will be adjudicated by May Twelfth and final results posted on the May 12th International Awareness Day page.

We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!

So far, I’ve contacted the Arts Centre Melbourne (for the Spire), Parliament House and the Royal Exhibition Buildings in Victoria. I have also tried to contact the Sydney Opera House and the Sydney Harbour Bridge. We have some other groups looking at places on the Gold Coast to light up.

purple

If you’d like to help,

please TWEET any of these:

  • ❤ to see a PURPLE #sydneyoperahouse for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @Sydney_Harbour bridge for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @artscentremelb spire for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE @VicParliament House for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • ❤ to see a PURPLE #royalexhibitionbuilding for #May12 #Fibromyalgia #Awareness Day #LightUptheNightOz #spoonie http://on.fb.me/1o0dI4v
  • @artscentremelb Niagara Falls will B PURPLE on May 12 AGAIN 4 #Fibromyalgia #Awareness: can we light up Spire pls? @Fibromodem #spoonie
  • @cityofmelbourne Niagara Falls will B PURPLE on May 12 AGAIN 4 #Fibromyalgia #Awareness: can we light up @artscentremelb Spire pls? #spoonie
  • @cityofmelbourne Turn @artscentremelb SPIRE PURPLE 4 International #Fibromyalgia Awareness Day #spoonie

OR visit their FB pages and leave a message like:

  • The Canadians are turning Niagara Falls PURPLE for May 12 – International Fibromyalgia Awareness Day. Let’s light up the <insert building>

Let’s have fun with this and make this a May 12th to remember!
Int Fibro

Thunder Strikes(?) Twice

If you follow my Twitter or Facebook page, you will know that I am supporting and promoting May Twelfth‘s Thunderclap ‘Tell the World!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number, Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

What is THIS Thunderclap?

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

The message will be published on every supporters’ Facebook page and/or Twitter feed (if (WHEN) we have reached the goal number) on May 12, 12:00 PM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

1. To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach by supporting with Twitter or Facebook; and/or
  • promote by inviting friends by sharing or tweeting.

2. You can write a blog post to let all your followers know about the project and embed the link: http://thndr.it/1lgWRbA

Our goal: to no longer be ignored! Last year, we reached 768 supporters – let’s double that!) Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

Int Fibro

It’s March (almost)

Suffering with a chronic condition can be extremely frustrating, making you feel lonely and misunderstood.
Developing and nurturing a support system can make some of these horrible ‘side effects’ just that little bit better.

BUT do you know the best places to locate these oh-so-valuable resources? That’s what the latest issue of LIVING WELL with FIBROMYALGIA is about… and it will be out and in your InBoxes tomorrow.

Have you subscribed? It’s free, fun and might actually help you.

Subscribe now by clicking here.

March Cover