National Fibromyalgia Awareness Day, May 12th

Each May, Fibromyalgia Awareness Day is celebrated around the world. In the USA, we call it National Fibromyalgia Awareness Day and it is OFFICIALLY observed on May 12th.

However, this year various organizations are celebrating National Fibromyalgia Awareness Day on Saturday, May 15th with events and celebrations and seminars. You name it, it's probably happening.

So take a look in your own community and find someone who is celebrating this special day of Awareness, a day designed to increase awareness and understanding of fibromyalgia—which we all know is a chronic pain disorder that affects 3-5 percent of the world population.

Participate in a Walk of FAME...get outside, and help the world become aware of fibromyalgia.

Sometimes the End is Really the Beginning

AND YET ANOTHER BLOG BITES THE DUST:

THIS IS A BLOG I STARTED AS MY DAUGHTER WAS DEALING WITH THE SELF-REALIZATION THAT SHE HAS FIBRO AND THE REALITY OF LIFE WITH IT. AND THIS IS MOST LIKELY MY LAST POST.

MY DAUGHTER, KALEN, IS ONLY A TEENAGER FOR 19 MORE MONTHS AND IS DOING AMAZINGLY WELL. AS A RESULT, I AM SO IRREGULAR IN MY POSTING ON TEEN FIBRO THAT I THINK IT'S BETTER TO QUIETLY CLOSE THE BLOG, BUT NOT DELETE IT.

MAYBE SOME TEENAGER, SOME TIME, SOME WHERE, WILL BE SEARCHING THE WEB FOR ANSWERS AND FIND SOME HELP IN ITS WORDS, SO I WILL LEAVE IT AS IS, I SIMPLY WILL NOT BE CONTRIBUTING ON A REGULAR (IF EVER) BASIS ANY LONGER.

MY BEST WISHES TO THOSE WHO SUFFER FROM FIBRO'S PAINFUL SYMPTOMS AND MY GREATEST HOPE FOR THEM AS WELL.

AS KALEN HAS LEARNED TO MANAGE HER LIFE AS SHE SIMULTANEOUSLY MANAGES HER FIBRO AND HAS LEFT THOSE DAYS OF DESPAIR BEHIND HER, I HAVE BEEN REMINDED THAT SOMETIMES THE END IS JUST THE BEGINNING.

NEVER FORGET THAT.

I LOVE YOU, KALEN, AND AM SO VERY PROUD OF YOU.

LOVE TO ALL,

JEAN

(YOU CAN ALWAYS FIND ME AT GIASOUTPOST.BLOGSPOT.COM)

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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