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.