Making Sense of Fibromyalgia ...

I have been caught up in a very long period of severe symptoms... sometimes affecting my life beyond levels of what I think I can handle.  

The good news is... It feels like I am coming out the other end (blogging is always a good sign). I can see an improvement everyday, even if it is just in small ways. 

Most times I have no idea how I get through and then I just look around, at my support system, and I know! With patience, understanding, communication and information... we all cope better.

The greater the knowledge, the greater the comfort level. If you, or someone you care about, are fighting Fibromyalgia... encourage others to learn as much as possible.

Below are some basic points to help the people in your life better understand the condition that affects millions and controls every aspect of life.

  

Fibromyalgia Basic Facts

• Greater than 4 million people, in this country, currently have a diagnosis of Fibromyalgia. It does not discriminate; children, those in the prime of their lives, elderly, men, and women have been diagnosed with this condition. 

• Fibromyalgia is a condition that produces chronic pain of the soft tissues that may include the muscles, ligaments and tendons. It also may produce a number of other symptoms including temperature sensitivities; numbness and tingling that may travel throughout the body, fatigue, insomnia, concentration problems, gastric upset, headaches, joint discomfort and depression.

• Diagnosis is difficult. Currently, there is not a medical test available that will clearly diagnosis the condition. Fibromyalgia does not provide a clear physical, visual trait that can easily be recognized by a physician. Many patients suffer with symptoms for years before receiving a definitive diagnosis. Currently, diagnosis is based on patient history and tender point sensitivity. 18 sites on the body have been classified as “Tender Points”. Extreme sensitivity upon palpation of at least 11 of these 18 points as well as a history of widespread, chronic body pain for at least 3 months provides the most definitive diagnosis at this time. 

•  The underlying cause of Fibromyalgia is unknown. Research is ongoing to understand the exact cause and new treatment options. To-date, researchers agree that Fibromyalgia patients have an enhanced pain sensitivity and response originating from the central nervous system. Traumatic illness or injury may trigger the condition. In addition, research is continuing to determine if other factors may lead to the development of Fibromyalgia including; genetics, environmental factors, autoimmune dysfunction, nutritional deficiencies and connective tissue disease. 

• Frequency, degree and location of pain vary from day to day for Fibromyalgia patients. It is important to understand that on any given day a Fibromyalgia patient’s level of discomfort may range from mild muscle stiffness to extreme, radiating pain so severe they feel completely debilitated and unable to carry out simple daily activities. 

• Treatment is focused on managing the symptoms. Since the severity of the condition varies from person to person and day to day, the treatment plan focuses on the determination of the underlying causes and an effective regimen to alleviate the symptoms to attain and meet the lifestyle goals of the patient. It must be an individualized plan based. There is no simple answer and management of this condition requires a multi-therapeutic approach. The patient must be focused, determined and dedicated to taking control to increase their functionality. 

• A well-rounded management program, with the assistance of a knowledgeable physician who will work diligently to determine the underlying factors, may also include; nutritional counseling, conditioning and exercise programs, alternative therapies such as acupressure and massage, stress management and relaxation techniques as well as, lifestyle changes. 

Support from family and friends is critical... Understanding of the condition, the limitations it creates and working to assist them with their management program can make a tremendous difference in helping them get through the lows ... and together, enjoy the highs! 

For more information visit   www.fmaware.org

Be Brave, My Friends (Guest)

Dear Fellow "ChronicBabes",

Today I want to share with you a short, simple message: Be brave in the face of chronic illness. It’s easy to be overwhelmed by fear or sadness. It’s easy to get confused, or to feel swamped with questions about the unknown—or to be angry about having to live with something you didn’t plan for, or don’t want to face. These feelings can weigh you down, and can fester and turn into fear.

Fear can hold you back. Fear can stop you in your tracks. Fear can keep you from being the truly awesome Babe you are meant to be.

I know this because I’ve let fear stop me before. I can tell you this because I’ve been there myself—I’ve experienced times in my life when fear overwhelmed me and stopped me cold.

But every day, I recommit myself to stand up against my fears and to live an incredible life in spite of chronic illness. And today is really one of those days—a day when I am truly standing tall and meeting my fear face-to-face, looking it square in the eye, saying hello to it, and then walking right on by. Fear is not going to stop me from being an awesome ChronicBabe, no matter how sick I am. I am going to rock this life!

Maybe this fear-fighting idea is old news to you; in that case, let this simply be a gentle reminder from a good friend. On the other hand, maybe this is a fresh idea for you; in that case, I hope you’ll consider printing this email and carrying it in your pocket for a few days, re-reading it each time you feel fear tug at your sleeve. (This is a favorite trick of mine.)

Feel fear? Face it down. Don’t let it stop you. I believe in you! And if you want to talk about your favorite fear-busting techniques, come on over to the Forum and we can have a chat about it.  I’ve already started a list there of some of my favorite fear-fighting techniques and I think our Forum members will be posting lots more.

Thanks for sharing this moment with me, friends. Be AWAP… (As. Well. As. Possible.)

XO,


Editrix Jenni

chronicbabe.com 

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Passing the Invisible Boundary (Guest)

Passing the Invisible Boundary

If one advances confidently in the direction of their dream, endeavoring to live the life they are imagining, he will put somethings behind. He will pass the invisible boundary. ~Emerson

I dream of being whole. I dream of healing. I dream of living with passion and with purpose and without pain. I am not there yet, but I am headed confidently in that direction.

After one month of yoga teacher training, I am certain I am on the right path. In this short time I have learned that although suffering exists, so too does happiness, and I have the ability to nurture my happiness, which in turn diminishes my suffering.

I have learned there are specific causes of suffering I have control over – what I eat, what I think, how I react. I can choose to nurture rather than deplete. We can all make this choice.

I am learning to live a mindful life – mindful of how I contribute to my suffering. Awareness is key. I am aware of my suffering, and aware that in me is the ability to acknowledge suffering while not living in suffering. It is imperative that I acknowledge my suffering if I ever hope to move past it. I can never understand a part of myself that I ignore or that I deny. Cessation of suffering comes only with awareness.

With awareness our actions are liberating and creative. When we are unmindful, we become caught in our conditioning and reactivity, and this conditioned reactivity keeps us bound to the cycle of suffering. ~Frank Jude Boccio, Mindfulness Yoga

I have been aware of the physical benefits of yoga for some time. That is why I made the decision to enroll in teacher training – I knew it would continue to help me heal, and in turn I could continue to inspire others to do the same. But I was not expecting the spiritual growth I am now experiencing. I was not mindful – but I am heading confidently in that direction.

Yoga is mind-body-spirit.
Yoga is all encompassing.
Yoga is life.
Yoga is gently leading me through the invisible boundaries.

What is your "Yoga"? ...

The Benefits I Didn't Expect (Guest) by Lisa

Sometime you read something that sounds so much like you, that you wish you had wrote it yourself ... and you wonder how could another person truly understand what is going on deep inside of you... Here are Lisa's words... Thank you Lisa... because you said it for all of us:

"It’s easy to get mired in our suffering, to feel we’re overwhelmed by forces in our bodies that bring us to our knees. I’ve been there for years, and things came to such a head that I simply couldn’t see any opening in that profound negativity no matter how hard I tried. Because Fibromyalgia and Chronic Fatigue can bleed your soul. But as I begin to recover a sense of wellness, as my hope is rewarded month by month, I begin to reach for the positive in what has happened and is happening to me. “Find the good in this,” I urge myself.

Is there good in suffering? Not directly. It’s a bad physical and mental place no matter how you slice it. But when we dedicate ourselves to our own rescue, I think we can indeed start to identify profoundly positive things.

For me, for many of the patients I speak with, walking this particular bed of coals can become a transforming experience. We can heal our bodies and along the way gain a new perspective on our lives.

What things have I identified as positives in having FM and CFS?

I’ve learned not to take anything for granted. Not my health, not my creativity, not my memory, not the support of those who love me. And I’ve learned I am absolutely not willing to let go of those things. To be able to value the essentials you never used to question? I think that’s a gateway to awareness.

Small things aren’t small anymore. I’m paying attention as I’ve never paid attention before. To the strong colours that bloom in the evening sun. To the fingers my body wags at me. To the amazing feeling of a morning that isn’t filled with crippling anxiety. In ways, it’s like not living blind. To be able to truly see? Isn’t that the foundation of defining meaning and truly participating in your life?

I used to live a crazy life. I did too much, let too much get to me, and when I was overwhelmed, I imagined stripping everything from my life, just throwing it all away, so all that was left was an empty white room I could refill with only those things that mattered. But it’s hard to remove the excess consciously. FM and CFS do that for you. As you grow to feel worse, you give up more and more, and then even more, just so you can keep up with the bare essentials. As you grow to feel better, you gradually add back those things that matter most. Knowing what matters most? Isn’t that one of the joys of life?

When I discovered I had FM and CFS, I became aware of just how hard I’d been trying to deny what was happening and to keep hold of my life. With a diagnosis in hand, I thought I was pretty stupid to have lived in denial that long, but we all need to honor the kind of strength that keeps us going. Now that I’m in treatment and tasting wellness, I’m aware of how I have committed to every supplement I swallow, to accepting and working through the plateaus that can disappoint, to pushing like a marathon runner to the finish line. We all need to honor that kind of courage. To know you have the strength and courage not to give up? Priceless.

The quality of empathy is more like a theory - and a little harder to extend to others - unless you’ve been through the wringer yourself. My heart is opening in ways I hadn’t expected; every day I’m increasingly aware how something is shaping my compassion. Knowing you can live caring and open? Our world is constructed of relationships, and the more of ourselves we can bring to them, the more we are fulfilled.

One woman I spoke with told me, “Just when the caterpillar thought her life was over, she became a butterfly. And to me, that is exactly what has happened in my life over the last five months. It’s changed my life for the better. Something so devastating took everything away from me. I had never imagined how that could parlay into something that refined me by fire. And it really did. It made me a better person.”

Treatment is about healing my body. It has also become about healing the soul FM and CFS bled from me. Along the way, I’ve found I’m not just reclaiming my life, I’m growing into a whole new life. Because recovering from anything takes effort, these are the things we need to hold close.

In all things - even this - there is good."

I’m NOT alright – A women’s perspective of FM by Graceful Agony

Graceful Agony

But you don't look sick?

FIBRO... There is no treatment, cure or even an accurate diagnosis ... :(

Fibromyalgia has changed my life... Although it is not all bad; given a choice it is not something I would have chosen for myself or have wish on anyone else.  It has however; given me a good reason to take care of myself, a gratitude for what I do have and an appreciation for what I still can do. (this acceptance has been a long process). 

As National Fibromyalgia Awareness Day (May 12th) approaches... I wanted to clue you in on a few key points:

There still are NO diagnostic tests available... (how frustrating?)
"Currently there are no laboratory tests available for diagnosing Fibromyalgia. Doctors must rely on patient histories, self-reported symptoms, a physical examination and an accurate manual tender point examination."

Diagnosis is delayed and expensive... 

"It is estimated that it takes an average of five years for an FM patient to get an accurate diagnosis. Many doctors are still not adequately informed or educated about FM. Laboratory tests often prove negative and many FM symptoms overlap with those of other conditions, thus leading to extensive investigative costs and frustration for both the doctor and patient. "

Other issues may complicate diagnosis...

"Another essential point that must be considered is that the presence of other diseases, such as rheumatoid arthritis or lupus, does not rule out an FM diagnosis. Fibromyalgia is not a diagnosis of exclusion and must be diagnosed by its own characteristic features."

Currently we are limited to only two criteria...

"To receive a diagnosis of FM, the patient must meet the following diagnostic criteria:

1- Widespread pain in all four quadrants of the body for a minimum duration of three months.

2- Tenderness or pain in at least 11 of the 18 specified tender points when pressure is applied

My particular petpeve; the medical community is so quick to prescribe drugs and recommend invasive treatments ... even without a diagnosis...

We still have so much work to do. Fibromyalgia is a debilitating, life changing illness effecting millions of people; and many that may not even know it's name.  For those suffering ... "a name" can make all the difference.

Your thoughts...experiences???

Please mark your calendar: May 12th