It's not the Fibro, It's the Drugs.

Sometimes life takes turns you are not expecting, and then sometimes it takes a U-turn that leaves you with whiplash.

The drugs that fibro patients take are critical to their ability to live a less painful day-to-day life, but those same drugs can be harmful to a growing fetus.

This is why it's so important for fibro patients to understand that their ability to have a child is not cancelled out by their fibromyalgia, but the life of an unplanned child might be cancelled out by the drugs they are taking IF they don't plan ahead and work with their doctors as they begin to plan a family.

Medications are not something to guess about. Your doctor can tell you what, when and when not, to take them, ESPECIALLY when you are wanting to get pregnant.

Like everything in life, and life everything in a fibro patient's life, planning makes all the difference.

If you want to get pregnant, talk to your doctor first. Most likely there will be some changes in your medications, whether it's a change in prescription or dosage - it will make the environment your baby will be living in for 9 months much more conducive to nurturing a healthy baby.

NO drugs may not be the answer, so please don't self-prescribe or self-diagnose.

Keep your doctor in the loop if you are sexually active, whether single or married, and whether you are planning a child or not.

Your health is just as important as the baby's health. Don't think one can be sacrificed for the other.

It's not the fibro that will cause problems in a pregnancy, it's the use of necessary prescribed drugs without conversation with your doctor about appropriate adjustments when you are carrying a child.

You Are In the Driver's Seat

Sometimes you just don't know what to say or how to say it, you are at a loss for words. People disappoint you, plans get derailed, health fails and doctors deliver unexpected news.

Life can take twists and turns that were definitely not shown on the road map you had been following.

I suppose that's how it is when someone is diagnosed with any unexpected condition, including fibromyalgia. Words may suddenly fail you.

And when that diagnosis and sudden fork in your chosen road appears, the inaccurate road map you had been following isn't going to be of much help. In a nanosecond you feel lost. Suddenly it seems as if you are on your own, even if someone is sitting right next to you in the passenger seat, and only you can turn the steering wheel, only you can apply the brakes, only you can accelerate out of control, only you will determine where to go from here.

So whether at a loss for words or simply lost, you are in the driver's seat.

Yogi Berra once said, "When you come to a fork in the road, take it." Since those who are diagnosed with fibromyalgia have no choice in the matter, Yogi's advice is right on target.

Don't let a fork in your mapped out path derail you completely. Take the fork and remap your gameplan from a new starting point. You don't have to lose time and progress, but you do have to reprioritize.

Suddenly the destination seems further away and the road to get there is now a detour, but the the important thing is that you are still heading toward the same destination. You are still you.

When words fail you, rethink and try another tact. When plans fail you, regroup and try another path.

And even from the driver's seat, you can listen. Ignore irritating backseat drivers, but listen to your front seat passengers -those who care about you, listen to those who have been there before, listen to those who are familiar with your circumstances. No, they cannot and do not feel and know what you do, but they can often be of help. They can provide alternatives, suggest new directions, even give you a sample map to follow.

It's still your life. It's still your reality. It's still your detour. You may want to slam your foot down on that accelerator and just fly on by as if nothin has changed. But that isn't going to help and sooner or later you will run out of gas.

Racing ahead is not the best answer, you need to take a pit stop and examine the critical areas of your life that may be affected by this unexpected change. You need to assess your friends and family for those who can be of help. You need to remember that you may be in the driver's seat, but you aren't really alone.

We are all here to support you, whether it's fibromyalgia or some other unexpected turn in the road. We are just down the street, or around the corner, or at the other end of a phone call - so be careful and don't drive right by the support that is so close that you might not see it; take your foot off the accelorator, brake slowly and use us as your rest stop. Let us help where we can, even if all you need is a peaceful place in the shade to think or a cool drink.

You can do this, I know you can. And we're right there behind you. Just check your rearview mirror.

Fibro and Pregnancy

Not very much is known about fibromyalgia and pregnancy. Doctors know a lot about pregnancy, but fibromyalgia is still a misunderstood illness even when you aren’t carrying a baby. From what I have read, the research that has been done often conflicts, so just as with fibro all by itself, more information is needed for both doctors and patients.

The good news is that research shows that babies born to women with fibromyalgia are typically healthy, full-term, and of a good birth weight. However, from conception to birth and even the first 90 days following birth can be a challenge for the fibromyalgia Mom, according to some research. Other research showed that the fibro symptoms in pregnant Mom’s tend to lessen or even go away altogether, possibly due to the ovarian hormone relaxin which increases to 10X the normal levels when women are pregnant.

Although pregnancy can eliminate fibro symptoms for some, most women will experience the return of their pre-pregnancy fibro symptoms after giving birth and will experience specific symptoms such as muscle pain when they breastfeed.

Simple precautions that should be recommended for any woman who is breast feeding, not just fibro sufferers, should be taken: find a supportive and comfortable chair, prop your arm on a pillow, make certain the baby is supported and that you don’t have to hold all of their weight, be careful about your own position and posture, find a place that is as tranquil as possible to nurse.

The issue of meds is also of concern, not all medications are safe to continue during pregnancy, but some are. Make certain you talk to your doctor prior to getting pregnant or immediately upon becoming pregnant about your meds.

And of course, eat smart and healthy, keep moving and work out moderately, don’t overdo anything, sleep enough, sit enough, walk enough, eat enough, take appropriate meds, and enjoy your pregnancy.

The best news is that you can stop worrying, because fibromyalgia should have no negative effect on your baby. The challenge is whether your fibro-body can manage a pregnancy. The question is, are YOU up to it?

There’s a baby at the end of these 9 months, what other time will you have such a reward at the end of what may include some very uncomfortable times?

So enjoy, be smart, plan ahead and congratulations!

FDA Warnings about Meds (Alarming Treatments?)

I was sent a note by Tricia, who has provided this link for information about some medications that may have some very serious side effects that we all should be aware of. She was informing me in case my daughter was taking any of these meds. What a sweetheart. This is what I am talking about. Together we can help one another and we CAN make a difference.

Here is Tricia's note in part:

I just read a FDA warning about certain medications that are sometimes used to treat fibromyalgia and cause an increased risk of lymphoma and other cancers associated with the use of these drugs in children and adolescents. It's Tumor Necrosis Factor (TNF) Blockers and are marketed as Remicade, Enbrel, Humira, Cimzia, and Simponi.

Thank you Tricia!

National Invisible Chronic Illness Awareness Week, September 14 - 20

Click here for information about National Invisible Chronic Illness Awareness Week! It's right around the corner!

Magical Inspiration for Fibromyalgia

Every day with fibro can be filled with pain and frustration, but more importantly, every day with fibro can be a new opportunity to celebrate life and face challenges with determination.

No, it isn't easy.

Yes, there will be days you want to just stay in bed. There may be days you can't do anything BUT stay in bed.

But there will be days...and that's the gift you can't forget. You have days. You are alive. You are important. You have something to contribute. You are YOU, and you are unique and precious.

Make sure you don't let fibro win, it may keep you in bed for a day or two, but that isn't winning; if you let it suck your smile and happiness it will have won.

The top picture is of my daughter Kalen with her niece, Kayla - a miniature Kalen as you can see. Kalen suffers from the collective challenges of fibro every moment, just as so many do. But she also chooses to celebrate life...and savor the good moments. She is in college. She is dating. She rides her bike. She eats smart and rests well. She has her bad days, but she lives for the good days. She is brave and beautiful and she is in pain; she has fibromyalgia.

Cysts and pain and fatigue and mood swings make it a challenge to rise to the occasion sometimes, but she almost always manages (without whining or complaining), as you can see in the second picture of Kalen as a bridesmaid, which was taken at Kalen's sister's wedding.

She is my inspiration. If you need someone to help you, use Kalen. She is amazing. You can email her at teenfibro@gmail.com. Or you can always email me at that same email address.

Dream. Never give up. Don't let it win. This final picture is of Kelly and Logan, Kalen's older sister and her new husband. It's magical, isn't it?

Kelly doesn't have fibromyalgia, but she has had her own challenges, as we all do. And yet, there she is, a bride and now married to her dream guy. She is also my inspiration.

I know that you can do this, and together we can increase awareness and improve treatment of fibromyalgia.

Life can be magical for all of us. So, please, let the magic begin in your life...remember who you are!

On the Road...

I have been travelling for the past several weeks and will be pretty much continue trekking through southern Utah and then back to New Mexico for the next week or so. Thanks to those who have visited the site and posted as well, I will be back and focused sometime next week!

Carry on!

A Book about Fibro!

PRLog (Press Release) – Aug 13, 2009 – The Missing Pieces of the Fibromyalgia Puzzle

“Perhaps the most sensible book on fibromyalgia ever written” according to Frederick Wolfe, M.D., Master, American College of Rheumatology and lead author of The American College of Rheumatology 1990 Criteria for the Classification of Fibromyalgia.

This is the book that changes everything for patients, healthcare providers, and everyone with an interest in truly understanding the cause of fibromyalgia and chronic widespread pain.

In The Missing Pieces of the Fibromyalgia Puzzle, author Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R. provides the revolutionary insight and understanding that redefines the landscape of fibromyalgia knowledge, diagnosis, and treatment by exposing the fallacy of pain from nowhere, revealing the failure of the fibromyalgia diagnosis, elucidating the true cause of fibromyalgia pain, and offering real treatment for what’s really going on.

The Missing Pieces of the Fibromyalgia Puzzle is the most ground-breaking and transformational book ever written on fibromyalgia and chronic widespread musculoskeletal pain. It does what no other book or publication has ever been capable of doing. Through original, cutting edge clinical research results and evidence-based analysis, it actually identifies the cause of pain in fibromyalgia, the mechanism by which it evolves, how it is modulated, and how to effectively treat it.

This compelling, scholarly, yet immensely accessible new knowledge demystifies fibromyalgia and chronic widespread musculoskeletal pain and makes everything that is unknown about the relationships between pain, tenderness, disability, sleep, weight related issues, psychological and psychosocial disturbances, and sexual difficulties clear and understandable.

Written for patients and healthcare providers, The Missing Pieces of the Fibromyalgia Puzzle will transform the lives of individuals afflicted with fibromyalgia and chronic widespread pain. Its enlightening blend of traditional and complementary therapies guides and empowers patients and their healthcare providers with the most unique, integrated, and thoroughly effective self-managed wellness recovery program ever published. It provides the substrate of truly justified hope and faith in the ability of individuals to transcend the suffering of fibromyalgia to make positive changes in their health and overall well-being.

Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R., is a rheumatologist expert specializing in the diagnosis and treatment of fibromyalgia and chronic widespread musculoskeletal pain for thousands of patients over more than two decades. Dr. Sarkozi has researched, developed, and patented numerous unique orthotic devices and created original, innovative treatment programs to relieve symptoms and improve function in patients with fibromyalgia, chronic widespread musculoskeletal pain, and other arthritic conditions. He currently directs the Fibromyalgia Polypain Arthritis Center in Orange County, California.

Ordering Information: Web Store: http://www.missingpiecesfibromyalgia.com. Telephone: 714-973-0106. Fax: 714-973-0129. Mail: Sagecoast Publishing, 801 North Tustin Avenue, Suite 503, Santa Ana, California, 92705. Softcover ISBN: 978-0-9819223-3-1, $29.95. To contact Jeff Sarkozi, M.D., F.R.C.P.C., F.A.C.R. for interviews, speaking, or lectures use contact information accompanying this press release or visit http://www.fmpolypain.com.

Western Medicine is Behind!

Dr. Oz and Oprah have joined the conversation on fibromyalgia! Dr. Oz's concluding remarks in the article are here:

"Because Western medicine was slow to accept fibromyalgia, it is behind in its work; this is an area where patients will want to take a serious look at alternative approaches. Energy-based medicine could offer some important advances in treatment over the next decade, but since it has yet to be tested by independent research, I think it's premature to base your therapy solely on this approach. I'm more impressed by Teitelbaum's supplement regimen, and not only because he has tested his theories: I've put patients on this program with very good results. I would add counseling, as it should always be a part of fibromyalgia treatment. If after a couple of months you don't see improvement, talk to your doctor about drug therapy."

We are not alone in this fight!

Thank you to Oprah and Dr. Oz!

Tired

I am tired of the reality of fibro, and I don't even have it.

I am tired of the added burden and strain to what is already a stressful, difficult life.

I am tired of the lack of understanding and acceptance by those who haven't taken the time to do their homework and learn about this real disease.

I am tired of people looking at me when I talk about my teenage daughter's fibro as if I am making excuses for someone who is simply experiencing the trials of the teenage years.

I am tired of their condescending nods while their minds are somewhere else.

I am tired of worrying that doctors are not treating fibro as they should, because even they don't get it.

I am tired of it all. And that is why I am blogging. And that is why I am reaching out. And that is why we need your help to get TeenFibro off the ground.

And my tired is nothing at all compared to the "tired" felt by someone with fibromyalgia. I can rant and feel a bit better. They can rant all they want and the fatigue and pain will still be there.

Thank you for all you do to help bring fibro to the forefront of research and treatment efforts.

Together we can beat this. No matter how tired you are or I am.

Laughing, when it's No Laughing Matter

Once again Adrienne Dellwo has a timely fibro article at About.com, this particular article is about the importance of keeping your sense of humor through it all.

And you thought nothing could be harder than fibro. Now we expect you to laugh too? Uhmm, yep, we do. We hope you will laugh.

Laughter is known to have wonderful health benefits, and more than physical health it can help your mental and emotional health as well. Even with illness and pain pounding down our door and moving in, the importance of being able to see humor in life can't be underestimated.

I can't pretend to know what you are experiencing when that overwhelming feeling of fatigue and pain and fog descends, but I know without a doubt that finding something to chuckle about - even if it's yourself - will help to lift the weight of your reality.

Laugh and laugh hard. Look for humor in the hardest moments. Remember that you are human and imperfect and that's OK, laugh at yourself when you can.

Life isn't all comedy, that's for certain, tragedy is definitely part of it. But the way we can get through tragedy is with humor, light-hearted, respectful, brain-clearing humor.

So, although the popular song is "I Hope You Dance"....I would change it a bit.

I hope you laugh. And laugh more. And laugh again. And keep laughing, even when it hurts.

Laugh, even when it's no laughing matter.

Things That Go Bump In The Night

We have all heard the phrase..."things that go bump in the night." Weird things, strange things, spooky things...things that make you scream and moan. Frightening, but imagined things.

Fibromyalgia has its own weird and sometimes frightening things that make patients of the disease moan, but these things are not imagined. These are painful and real things.

Fibromyalgia can be caused and aggravated by a lot of "things that go bump in the night (and day)." Anything that startles you, sudden jolts to your body, loud noises, and bright or flashing lights are just a few strange things that can "bump" you from a relative comfort into instant pain.

For me, I can only equate this kind of cause and reaction to when I was in labor. Every ounce of my focus and concentration and energy was zeroed in on the labor pains I was enduring. For a fibro patient, it isn't too far from reality to say that every bit of their energy, focus and concentration is often zeroed in on the aches and pains they are experiencing as a result of their fibromyalgia.

In both of these cases, in labor and with fibro, a sudden ANYthing is a jolt of some type, and not a welcome diversion. Loud noises, jostling of your bed or chair or car, bright lights, flashing signals, startling sounds - all of these things can actually be fibromyalgia-pain triggers; one reason could be because they take the person's focus away from the conscious and subconscious onging effort to manage their existing pain.

Research indicates that a likely cause of fibromyalgia is some type of trauma to the patient which can typically be traced to the onset of their fibro symptoms. Likewise, aggravated symptoms can be linked to aggravating occurrences - loud noise/abdominal pain, etc.

Things that go bump in the night: imagined for most, but very real for fibro patients.

So watch those corners, dim the lights and turn the music down a bit; and maybe even say a little prayer:

For goulies and ghosties and long-leggedy beasties
And things that go bump in the night (and things that cause pain in our friends)
Good Lord, deliver us! (The Cornish and West Country Litany, 1926)

Yes, I can do that.

Giving yourself permission is a key factor in living a full, non-guilty stress free life with fibromyalgia. Once again Adrian Dellwo shares timely insights in her column on About.com through comments made by others who also have fibro.

I have watched my daughter struggle to keep up, not because she doesn't have the will, or the energy, or the capacity, but because she has the limitations of fibromyalgia. We recently discussed the need for her to think ahead and manage her time and energy wisely. She can do anything she wants, she just can't do it all at once like some others can.

Giving yourself permission is not just about say yes, it's also about saying no. YES, I would love to do that, but NO, I can't do it today. No, I can't walk for three hours, but yes I would love to meet you 1/2 way and walk back. Yes, I can help with the fundraiser, but no I won't be able to stay all day.

You get the idea.

Life with fibromyalgia is about your choices, your decisions, your self-imposed parameters. Don't ever hesitate to take charge and tell yourself no, or even better, yes!

Not Too Tired to Write a Letter

I was watching the commercials on TV this evening and became rather irritated by the insinuation that anyone who is feeling a tired should ask their doctor if they have fibromyalgia. Really?!??

The commercial I watched is not the kind of publicity we need, in fact, it's the opposite of what we need. The commentary used is exactly what makes people doubt the reality of fibro. This misleading information encourages an awareness that we don't want, one that is not based on the reality of fibromyalgia.

I get tired every darn day, but I don't have fibromyalgia nor should I ask my doctor if I do. And my "tired" does not even begin to compare to my daughter's tired.

We have to be real about this. Tired does not equal fibro. Tired people probably don't need fibro meds. Correct diagnosis and best practices are critical, and appropriate prescriptive medicines are key.

Let's hope that the pharmaceutical companies who are profiting from the new medications being marketed for fibromyalgia patients will be more responsible in the future with their advertising campaigns. I appreciate what they are doing in their R&D departments, just as I appreciate that they need to make a profit, but they still need to keep their advertising honest because when they don't it hurts our efforts to increase awareness of the reality of fibromyalgia.

In the meantime, while we're hoping for truth in advertising, I am going to write a letter to the maker of Lyrica, maybe you should too (oh yeah, it was their ad). They are making a huge contribution to the relief and control of symptoms and pain related to fibro, but we still need to demand forthrightness and honesty in promotion of their product because that is what will help our cause globally and for years to come.

Fibromania is Growing

More and more blogs are showing up on the web about fibromyalgia. More twitterers are tweeting about fibro. More articles are being written. More patients are being diagnosed.

And more doctors are recognizing fibromyalgia as a real disease that needs monitoring, treatment and accurate, individual diagnosis.

Fibromania is growing. And together, patients, parents, families, doctors, counselors, research foundations, supporters, we will beat this. Hang in there!

What Do You Miss The Most?

I just read a great article about fibromyalgia patients and the changes they have had to make in their lives.

The defining question was "What Do You Miss The Most?", because the reduced level of energy, the irritating and debilitating pain, and the reality of living life a bit slower combine to mean that something has to have changed, something has been sacrificed for better health.

What is it?

The contrasting articles about fibromyalgia patients who have continued or returned to their favorite activities after giving a lot of thought and preparation to a different approach are reassuring. Some say you don't have to give up anything, but that doesn't mean you wouldn't miss something.

You might miss the level of energy you used to have. You might miss being able to live spontaneously and not worry about packing meds and rationing activity and sleep.

You might miss living without the knowledge that you have fibromyalgia.

Whatever it is, you are missing it and we need to remember that. But, having said those words, we also need to remember that you have a new reality with new opportunities, you are a new person with a new perspective on life because of your reality.

Celebrate who you are instead of regretting what you miss.

You deserve it.

You Can Find Your Own Path

If you take a few minutes to read the article below from The Durango Herald, you will understand the title of this post. Liz Harrison's life story from 13 years of age forward sounds very much like my daughter's and probably will sound very much like any teenager who is finally diagnosed with fibromyalgia.

In the article, Liz's Mom talks about owning your disease and then managing it. She makes a very important point. Anyone with fibro should be working with specialists in the field, talking to others with the condition and learning as much as possible so that they are informed, current and have the ability to make good decisions regarding their lives.

We can all learn from each other and encouraging stories from fibromyalgia patients can only give hope and provide a goal for others to work toward.

Enjoy the article and never forget that the path someone else is on does not have to be the path you follow.

In fact, it probably shouldn't be.

Durango Herald News, Pain kept teenager from high school, but not high goals

Durango Herald News, Pain kept teenager from high school, but not high goals

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Campfire Therapy

If you are a camper, you know how it feels to sit around a warm campfire beneath an open sky filled with stars. There is quite possibly nothing like it.

As a young girl, the Girl Scouts taught me to love camping and hiking and roasting marshmallows around the campfire. I would wrap myself in a blanket and settle into the dirt using a log for my backrest and watch the dancing flames without a care in the world.

Fibromyalgia patients should be able to do the same, but that is only IF they go camping at all. For someone in pain it's difficult to think about sleeping anywhere but in the comfort of their own home, the familiarity of their own bed and without easy access a myriad of items most of us never think about.

Adrienne Dellwo writes a great column about Fibromyalgia and Chronic Fatigue Syndrome on About.com. Today's column is about camping and since my daughter is camping this weekend I thought the timing was serendipitous.

Ms. Dellwo creates a checklist for campers with fibro, reminding us of the little things that can be so easily forgotten - a soft sleeping bag rather than an itchy or lumpy one that could irritate, non-chemical based bug repellent since chemicals can wreak havoc on many fibro patients, etc.

It's a fairly comprehensive list, the old adage "everything but the kitchen sink" may apply here, but once you are finally settled in and sitting beside that fire - no matter how many layers you have on - there is still nothing that compares to being outdoors beneath a star-filled sky.

Happy camping! And you may not want to take the kitchen sink, but don't forget the medicine cabinet!

We're Tweeting, are You?

Sometimes you have to stop in your tracks, take a deep breath and then rush forward to catch up with the world and we are doing just that.

We are now official Tweeters. Follow us, join in the tweeting, we are out of breath but ready to gain some distance on the next round.

Tweet tweet!

It Feels Like Death, Only Worse.

Click on this link: Fibromyalgia Still Not Universally Recognized As A Disease to read an excellent article by Sam McManis of the Sacramento Bee. The article talks about different descriptions fibromyalgia patients have given to their doctors in an effort to describe their symptoms and how they feel. "It feels like death, only worse" is only one example.

Thanks to the Sacramento Bee and Sam McManis, along with Scripps News who published it online, for sharing this article and spreading the word about fibromyalgia.

Together we can do this!

Fibromyalgia Circle of Care

Although many of us are joining hands in an informal circle of care for fibromyalgia patients, three recognizable groups are joining forces to create an official Fibromyalgia Circle of Care.

In a recent article in Chiropractic News, Johns Hopkins University School of Medicine, The Institute for Johns Hopkins Nursing, and the National Fibromyalgia Association announced their collaboration in the Circle of Care program with the goal of improving patient outcomes.

The article comments that in the first five to eight years after the onset of the disease, many fibromyalgia patients see an average of four doctors before an accurate diagnosis is made. This means that for five to eight years the patient may have been struggling with fibromyalgia AND the results of misdiagnosis, under-diagnosis and inappropriate treatment. (Victor Marrow, PhD, Executive Director, Office of Funded Programs/CME, Johns Hopkins School of Medicine)

Further, the article includes the following information: "With fibromyalgia affecting up to 10 million people in the United States, or up to six percent of patients seen in general medical practices..." Wow, that's a lot of people who could benefit from this unique collaboration.

We applaud this joint effort and hope you will too. For more information, email info@circleofcare.md . You can link to the article by clicking here Circle of Care.

Together we can do this! Join hands, join forces...join the fight for a cure for fibromyalgia.

The Frederick News-Post Online - Frederick County Maryland Daily Newspaper

The Frederick News-Post Online - Frederick County Maryland Daily Newspaper

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Pills Won't Heal the World

He wanted to heal the world. Michael Jackson may have been the King of Pop, but in becoming so he "popped" a lot of pills...for pain. And that is a common denominator between Michael Jackson and those who suffer chronic pain, including those with fibromyalgia. Michael died as a result of those pills, we want you to live.

There is no question that the pain associated with fibromyalgia can be debilitating. There is also no question that the people most susceptible to pill addiction are those in chronic pain. Even people who have a serious injury or a single surgery can become addicted to pain pills prescribed following their particular experience.

And I am not the only one who is concerned.

The FDA may ban two painkillers that are widely used by some with fibromyalgia. For more information, just click here: painkillers .

The bottom line here is safety. Safe use of drugs. Safe management of pain. Safe maintenance of health. I don't know that banning drugs that are useful when administered properly is the answer, but I don't have a solution to recommend either.

I do know that there is no good reason to solve one problem by creating another, to become addicted to manage pain; addiction (and overdose/death) are certainly not positive or rational or acceptable alternatives to pain. There are other choices.

Pain is serious, it's life-changing, it's hell, but addiction and/or death are worse.

So, be careful, be smart, be safe. Monitor and manage and moderate.

We need you around. And the world needs you...to make it a better place - for you and for me and the entire human race.

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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TeenFibro - This is our story

TeenFibro - or teenage fibromyalgia. It's real, it's scary, it's elusive, it's manageable. This is our story.

For the past several years, my daughter Kalen Marie, suffered from various and curious symptoms. She was in pain, she was tired, she was depressed, she couldn't get out of bed, she was scared, she was angry. Sixteen and feeling completely at her wits end.

As a practiced Mom of teenagers (5 prior to Kalen), I thought I had seen the worst of teenage malaise, but Kalen seemed to be proving me wrong. I had not experienced anything like the frustration both she and I suffered through as doctor after doctor sent her home with no diagnosis, no advice and non-verbalized messages that this was simply a lazy, stubborn teenager.

After a few good months, Kalen applied to Rotary International for a year abroad as a Rotary Exchange Student. We were honest about her past illness and the non-diagnosis, and Rotary accepted her. Kalen was off to Brazil!

Once in Brazil, her symptoms seemed to subside for a very short time, I think the adrenaline and excitement simply helped her to forge ahead in spite of her pain and exhaustion. However, it wasn't long before the same symptoms that had kept her in bed on those early high school mornings returned, and Kalen was in pain and scared and feeling very alone in Brazil.

She KNEW her pain was real. She KNEW her body was tired beyond normal. She KNEW her depression was affecting her life in many ways. She KNEW something was wrong, but over and over again in the past, doctors, parents, siblings and friends had almost scoffed at her repeated complaints.

It was hard for all of us to understand, because one day Kalen was fine...and the next she could not get out of bed. We were not sure what to think, but the common mentality was "she is just a teenager."

But the reality was, she was "just as teenager, with undiagnosed fibromyalgia".

In Brazil, Rotary rallied and three doctors separately diagnosed Kalen with fibro. It was a relief and a concern. Finally there was an answer, but the answer was permanent. It wasn't going to go away. It wasn't a pill that would heal everything.

Kalen cried. She cried from relief. She cried in fear. She cried mostly because finally her family, her friends and her teachers and doctors knew that she was not just making excuses, she was not just complaining for attention and she was NOT "just a teenager."

She had fibromyalgia. And from the day of her diagnosis, it's been a daily effort to reclaim her life and combat the irritants that affected her psychologically and physically - from her diet, to her way of thinking, to her level of activity.

Everything changed in that instant, and it changed for the better. Now almost eighteen, with a year in Brazil under her belt and a new way of living life, Kalen is thriving. She still has her down days, but they are less often and less intense. Now that she understands why she feels like she does, she can take steps to minimize her stress, her overexertion and her pain.

This blog is to help others discover that life can be good and fun, even as a 'teenager with fibro".

We are looking forward to a growing conversation among anyone affected with or by fibromyalgia, but especially those who are dealing with "TeenFibro."

"It takes courage to grow up and become who you really are." ee cummings (and you can do it!)

:) JeannieB