Dec 182013

By Karen Weintraub
Special for USA TODAY

Fibromyalgia affects 1% to 5% of Americans, mainly women, but until recently, scientists had no idea what might be causing its severe and mysterious pains. For decades, doctors told patients their agony was imaginary, the result of emotional hysteria, not a physical ailment.

But this year, researchers finally began to get a handle on the condition.

“What’s happened is in 2013 there’s been this absolute explosion of papers,” says neurologist Anne Louise Oaklander at Massachusetts General Hospital in Boston. “The whole view on this has shifted.”

Oaklander published two studies this year showing that half or more of the cases of fibromyalgia are really a little-known condition affecting the nerves. People with this small-fiber neuropathy get faulty signals from tiny nerves all over the body, including internal organs, causing an odd constellation of symptoms from pain to sleep and digestive problems that overlap with symptoms of fibromyalgia.

Neuroscientist Frank Rice and a team based at Albany Medical College also discovered that there are excessive nerve fibers lining the blood vessels of the skin of fibromyalgia patients – removing any doubt that the condition is physically real.

These fibers in the skin can sense blood flow and control the dilation and constriction of vessels to regulate body temperature, Rice says, as well as direct nutrients to muscles during exercise. Women have more of these fibers than men, he says, perhaps explaining why they are much more likely to get fibromyalgia.

“Blood vessel nerve fibers are an important target that haven’t been in our line of thinking to date in chronic pain conditions,” says Rice, now president and chief scientist at Integrated Tissue Dynamics LLC, a biotechnology research company in Rensselaer, N.Y.

In recent years, scans of patients with fibromyalgia have revealed brain changes associated with pain, but the new research suggests these are a symptom rather than the cause of the condition. Read the full article…

Dec 142013

Stress Meter w credit w creditThursday, June 21, 2007
By: Eve Reddin Lennon, CPCC

This is the time of the year when we find ourselves surrounded, if not bombarded, by a multitude of media messages suggesting what we should be doing for the holidays and how we should be doing it. These messages are designed to conjure up sugarplum visions of beautiful, festive, picture perfect, storybook holidays with smiling families and all the trimmings that will surely bring us all peace and joy and incredible holiday happiness. Like a Norman Rockwell painting, or a Hollywood movie, or even our own romanticized memories of tradition-soaked holidays past, these images are seductively appealing—but the problem is that they aren’t real. They are fictionalized, idealized versions of the holidays.

Consider for a moment the expectations we have placed on ourselves to make our own holidays fit these perfect, but imaginary and unattainable images in our heads. Way beyond our genuine and heartfelt desires for the Season’s Greetings, Merry Christmases, and Happy Hanukahs, we enter the season believing we are somehow obligated to follow a set of unwritten rules prescribing just what and how much we should be cramming into a few short weeks: “Deck the Halls!” (Inside and outside, upstairs and down until everything glows, sparkles, or twinkles, and smells like pinecones and spice.) Or, “It’s the season to open your hearts and be generous” (meaning shop till you drop, wrap it all up, and defer payment until January when you open the bills and go into stress overload).  It is also the season to “Gather your family” (whether you want to be with them or not,)to be the perfect hostess, to set a beautiful table and serve up at least one feast (dust off those cookbooks, shine up the silver, polish the crystal), and of course, to dress up, put a smile on your face, and attend all the parties, functions and festivities within a 250 mile radius.

Somewhere deep in our own heads is a list longer than Santa’s—of all the things we believe we need to or should do to make the season merry and bright. But the fact is that in order to do so we would each have to be a Martha Stewart clone with a staff of forty and the stamina of the Energizer bunny.

Wow. It is a recipe for exhaustion for nearly anyone, but for those of us with chronic illnesses like FM, it can be a recipe for a holiday disaster that results in unrelenting pain, brain fogs, and that deeply rooted, energy leeching fatigue that leaves us incapable of functioning; feeling isolated and depressed. Continue reading…

Dec 112013

Love Gratitude and DadThose of us living with chronic pain and illness know all too intimately the suggestion to find the good in our circumstances. We pour over positive affirmations and self-help books, journal, meditate, bang our heads on the wall and stomp our feet. We ask, scream out, the question: ‘Why? Why me? What does it mean?’

And we do find it in ourselves to persevere and lift above our experience. Become bigger than it alone. We find strength we never knew we had, compassion and empathy for others and the vision of a life better. I’m not alone, and have moved through all of these at different times, and continue to.

How is it we might find our deepest wish in life fulfilled as, by what might seem, the direct result of our circumstances. And which may not have happened otherwise? How do we resolve that? And does it really matter that we do?

I’ve been doing a lot of reading these last few weeks – I’m on vacation! I’ve made my way through The Hidden Messages in Water, Secret Life of Water and The Shape of Love: Discovering Who We Are, Where We Came From, and Where We’re Going by Masaru Emoto. As well as Man’s Search for Meaning by Victor Frankl and am currently reading my way through The Power Of Appreciation and Wishing Well: Making Your Every Wish Come True. Each of these warrant a few lengthy posts of their own.

I see a thread weaving through them all. Threads of Love and Gratitude, Vibration and Resonating. This last week (the Universe, my God, whom or whatever you might call it) has shown me an abundance of each of these. In more ways than I can write about here.

I have wanted a lot of things in life. Some things really badly. A job, a raise, an education, to dance…but there is only one thing I could describe as a Wish. And that was the Wish to have a (loving) relationship with my father. It’s a whole other story (maybe) that we were separated when I was very young – too young for me to have a conscious remembrance of him.

I always had something of him with me though. And like when you squint at the night sky to see that flicker of a star, so was my hope to reunite with him. Just that glimmer. It was enough for me as a little girl and has remained enough for me throughout adulthood.

I was recently blessed when that glimmer broke through a dark sky and my father, mon père, reached out to me when word had reached him of my current state of health.

So the question is, does it matter that after all this time it took these circumstances to connect us? My answer is a resounding ‘No!’ There are no needed explanations. No questions I need to ask or have answered. All that matters is ‘now’, the present moment. And that we have connected.

I believe the love and gratitude I’ve been nurturing within myself has laid the foundation for this moment. And could those vibrations and (well) wishes I’ve made have had anything to do with the unfolding of recent events? Maybe…

Our past stories may unfold over time, but it’s our future story that we’re now writing.

Je t’ai toujours aimé mon père et toujours!


Have you experienced unexpected love and gratitude through your experience of chronic illness? I would love to hear your stories of serendipity, synchronicity or (well) wishing  in the comments below .


Sep 242013
A Map of Chronic Pain

A Map of Chronic Pain

Brain’s white matter may determine susceptibility to chronic pain

Scientists used the structure of the brain’s white matter (green lines) to predict whether a subject would recover from low back pain. Red dots represent differences in white matter structure between subjects who recovered and who suffered chronic pain. Courtesy of Apkarian lab, Northwestern University Feinberg School of Medicine

The structure of the brain may predict whether a person will suffer chronic low back pain, according to researchers who used brain scans. The results, published in the journal Pain, support the growing idea that the brain plays a critical role in chronic pain, a concept that may lead to changes in the way doctors treat patients. The research was supported by the National Institute of Neurological Disorders and Stroke (NINDS), part of the National Institutes of Health.

“We may have found an anatomical marker for chronic pain in the brain,” said Vania Apkarian, Ph.D., a senior author of the study and professor of physiology at Northwestern University Feinberg School of Medicine in Chicago.

Chronic pain affects nearly 100 million Americans and costs the United States up to $635 billion per year to treat. According to the Institute of Medicine, an independent research organization, chronic pain affects a growing number of people.

“Pain is becoming an enormous burden on the public. The U.S. government recently outlined steps to reduce the future burden of pain through broad-ranging efforts, including enhanced research,” said Linda Porter, Ph.D, the pain policy advisor at NINDS and a leader of NIH’s Pain Consortium. “This study is a good example of the kind of innovative research we hope will reduce chronic pain which affects a huge portion of the population.”

Low back pain represents about 28 percent of all causes of pain in the United States; about 23 percent of these patients suffer chronic, or long-term, low back pain.

Pain in the Brain with Dr. Vania Apkarian
Apkarian on Pain

Watch Dr. Vania Apkarian discuss the relationship between lower back pain and the brain.
Scientists have thought the cause of low back pain could be found at the site of injury. However, recent studies suggest that the brain may be more involved with chronic pain.

“Currently we know very little about why some patients suffer chronic low back pain,” said Debra Babcock, M.D., Ph.D., a program director at NINDS. “The earlier we detect pain will become chronic, the better we may be able to treat patients.”

Dr. Apkarian and his colleagues addressed this by scanning the brains of 46 people who had low back pain for about three months before coming to the hospital but who had not had any pain for at least a year before.

Continue reading full article…


Sep 202013

True False Compass In Blue w credit

Founder of National Invisible Chronic Illness Awareness Week and Rest Ministries

When it comes to making the daily decisions about our illness it’s easy to rely on instinct. Occasionally, however, our instinctive decisions about dealing with our disease can lead us astray. What we once believed about our body and its limitations when we were healthy may no longer apply, and yet we can still have those same clichés running through our thoughts, trying to dictate how we live.

Here are four lies we can easily listen to that can cause us grief or even physical harm.

1. Your illness is a sign that you somehow messed up

There are great debates over how much control we have over our bodies. Those who are diligent about what food goes into their bodies and how much they exercise will often claim they have prevented disease. Unfortunately, although we can lessen disease by eating healthy, avoiding smoking, and other good health habits, these choices do not guarantee that we are exempt from a chronic illness.

Some people who have made wise health choices for decades, have had their bodies eventually betray them, succumbing to cancers or other health conditions. And although one can delay a disease they may be genetically predisposed it, it cannot always be avoided.

Don’t beat yourself up trying to figure out what you did wrong to cause your illness. Guilt, blame and shame are not going to help you. Instead, spend your time understanding more about your unique illness and how it affects your body.

What is the common treatment? What symptoms can you expect? How have people responded to treatment? Are there controversies about treatments? Then choose to become the healthiest person you can be — with your disease.

2. If you rest you are letting the illness win

In the United States, the afternoon nap gets little respect. Many countries have rest times built into their work days, from Latin siestas to afternoon naps in Japan’s workforce, with “nap salon” popping up in major cities. But in our culture the shift in attitude has been slow, despite the fact that Google offers employees “napping pods” to take a quick rest. Rest has traditionally been considered a sign that you are lazy and unmotivated.

Continue reading…