Thinking Outside the Box

Yet another person who knows, cares and wants to help with the effort to find relief and a cure for fibromyalgia has contacted me through this site.

The Pacific Northwest Foundation (PNF) whose current mission is to "research, analyze, publish and develop materials addressing the capacity of complementary healthcare to effectively alleviate physical and emotional maladies."

Fibromyalgia is both a physical and an emotional malady. The Pacific Northwest Foundation is researching complementary healthcare options to help those with fibro. You can research PNF yourself at http://pnf.org/html/home.html.

A particularly sobering video produced by PNF - a case study of a 54-year old woman with fibromyalgia - can be found at http://pnf.org/html/fibromyalgia.html.

I feel compelled to add the following disclaimer: The video is about a severe case of someone with fibromyalgia and other health conditions who lived with fibro before the awareness of today about this condition. In spite of a lifelong and painful fight for medical health, in the end this is a success story for the woman as a result of complementary healthcare researched through PNF.

The video is rather clinical for most of us, with a lot of detailed information. If it's just too much, fast forward toward the end. It's a remarkable story of the cure of conditions that are often considered untreatable...in a short period of time.

The sharing of the video and site is not an endorsement of the methodologies recommended or used by PNF, but it is most definitely thought-provoking if not totally compelling information for all of us to learn from.

Thank you to PNF and all other organizations who are thinking outside the box in their efforts to work toward our common goal - a day where everything is beautiful and nothing hurts.

With all of us working at it, from all directions, we CAN do it...

The Bottom Line

Is anything sacred anymore? What happened to worthy causes without all the polyester-shirt/white-belt-and-shoes routine? Does it always have to be about the bottom line?

To me and to those who live with fibromyalgia, fibro is a condition; to others who sell pharmaceuticals and even some who provide treatments, fibromyalgia is yet another cash source. It's all about the bottom line to many of them. The profit margin.

This reality causes me both elation and concern.

There is no doubt that the increased recognition of fibromyalgia will result in better management of the condition, including pharmaceuticals and new types of treatment. There is also no doubt that a strong projected profit margin increases determination to find something that helps (the reasons for my elation).

There is also no doubt that a secondary product of increased acceptance of fibromyalgia as a real and debilitating condition will be "meds" and "docs" created simply to take advantage of a hopeful (aching) customer base; placebo's and new-fangled hocus pocus techniques that will not be real (the reason for my concern).

Recently, on my fibromyalgia news link, I have seen more articles on the profitability of new pharmaceuticals that are in the works, than on the condition itself (another cause for my concern).

I have great respect for modern medicine, including the research and development of new drugs and treatments for newly recognized conditions. I am simply too aware of the possibility of some within the world of health care and related fields to take advantage of already disadvantaged folks. It happens in every industry and every community; there will always be someone who will pick on the little guys, or be casually cruel to those who are hurting. Typically for that profit, that bottom line.

That is not our focus, or our message or our way of doing things. We are about real, caring research-based progress. The importance of moving forward and pushing for additional research is real, just as the importance of sharing the "good news" about fibromyalgia cannot be underestimated.

We have to spread the word that that fibro IS real - not imagined, that there ARE lifestyle changes that will help, that life CAN improve dramatically, and that there are people all over the world who DO understand. WE have to be positive, realistic, but positive.

Words like WE and CAN and DO are critical as we move forward to increase awareness, improve life for those with fibromyalgia and search for a cure.

I know that it's a worthy cause and I know that together WE CAN DO IT!

And that's the only bottom line that matters to me...

Everything was beautiful and nothing hurt.

Dreams are wonderful things when they allow us to sleep restfully and awaken with a new optimism, but some dreams are repeated over and over without any hope for immediate fulfillment.

Hope is important. Dreams are important. The two are forever linked in the minds of those with fibromyalgia.

I received a lovely note from Jenn at fibrologie.blogspot.com earlier today. I checked out her new blog and was thrilled to learn that we are in this together - same message, same fight, same page.

She commented in a post on her blog about how nice it would be to live just one day where "everything was beautiful and nothing hurt". It's her dream and has been for many years, yet she is only 21.

For those of us who are entering the "almost-senior-citizen" part of our lives, the dream of "nothing hurting" is a shared dream. We feel pain in our aging joints and tired muscles. The difference is that we just began dreaming this dream, we just recently recognized daily pain in our lives; for most of us this is new. We have lived the majority of our lives in painless oblivion. Life without pain is something teenagers with fibro cannot imagine.

But they can dream...and they can hope.

I hope Jenn's dream comes true, for her, for Kalen and for all teenagers and adults with fibromyalgia. But hope is not enough and that's why TeenFibro is coming into being, in the hope that we can work together to create better awareness, diagnosis and treatment of fibromyalgia, especially in teenagers.

I have a dream too.

Chiropractor sees results of fibromyalgia treatment :: Herald News :: Lifestyles

Chiropractor sees results of fibromyalgia treatment :: Herald News :: Lifestyles

The article above talks about some positive results seen after chiropractic treatment for fibromyalgia patients. Chiropractic adjustments may not be for everybody, but this is yet one more alternative to medication as a treatment for the pain associated with fibromyalgia. Food for thought. Would love to hear from anyone who has experience with this...

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Fibromyalgia - real or imagined

It doesn't take the Mom of a teenager with fibromyalgia very long to feel her blood pressure rise when she hears someone say that fibromyalgia is just another imaginary illness.

Really?

Let me simply say that this redheaded Mom not only has the redhead gene, but the high blood pressure button as well, and when I hear comments suggesting that fibromyalgia is not a real disease, it takes every bit of my energy to not jump down the throat of the person making such an insensitive and uninformed comment.

Fibromyalgia is not imaginary. It's real. It's painful. I have watched it. Thankfully, I have not experienced it, but my daughter has and does. Every day. Every hour. Every minute.

More and more teenagers are being accurately diagnosed, but often not soon enough for them to complete their high school education in a normal way. This recent article about Liz Harrison, another teenager distraught because she knew something was wrong but couldn't figure out what it was, is almost a mirror-image of my daughter's experience: (http://www.gazette.com/articles/school-57435-harrison-high.html )

TeenFibro is real. It can be managed. Now let's find a better treatment and a cure.

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