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Fibromyalgia Awareness Month, May 2012

Straight From The Hart
By Joan Rowden Hart

Fibromyalgia Awareness Month

I’m going to deviate this week from my usual theme of writing about
Lebanon’s  history and people in order to address a current medical
issue.

May is Fibromyalgia Awareness Month and I hope this column will help
to educate us to  understand this growing health problem which affects
so many people here in Lebanon.

The American College of Rheumatology estimates that fibromyalgia
affects between 3 million and 6 million Americans, mostly women of
child-bearing age and older, but also men and even young children and
teenagers.

Fibromyalgia, also called “fibro”,  is not a disease, but a syndrome,
meaning that it exhibits a specific set of symptoms that take place
together.

Although fibro is not characterized as an arthritic condition, for
purposes of diagnosis and treatment it  falls under the medical
umbrella of rheumatology.

We have come a long way in recent years because doctors used to tell a
patient suffering from fibro that it was “all in your head”.  It was
1990 before The American College of Rheumatology finally recognized
fibromyalgia as a clinical entity and established the criteria
officially used for diagnosis.

However, there is no way to test for fibro through laboratory tests.
You almost have to rule out all other diseases in order to make an
accurate diagnosis.

Therefore many family physicians or general practitioners have to rely
on anecdotal evidence to a great extent  in deciding when to refer a
patient to a rheumatologist because  every fibro sufferer is
different.  Our symptoms vary from one to another and we react in
different ways and respond to medications, treatments and physical
therapy in different ways.

The official research definition requires that eleven of eighteen
specified tender points must be present in all four quadrants of the
body, with the patient having had widespread more or less continuous
pain for at least three months.

A more layman-friendly definition would be that the patient suffers
from  all over flu-like symptoms, multiple tender points, major sleep
disruption, cognitive and memory problems, and constant fatigue.

 Also, fibro patients usually have to deal with  most if not all of
the following issues:  morning stiffness in the joints and muscles,
migraine headaches, irritable bowel syndrome, numbness and tingling of
the extremities, restless legs syndrome, temperature sensitivity,
dizziness and balance problems, depression and anxiety, and Sjogren’s
Syndrome (extreme dryness of the eyes).

Most fibro patients are never able to enter the deep sleep cycle which
is necessary for the body to repair and restore itself through the
night.  So we never feel rested and our memory and ability to
concentrate are adversely affected.  This contributes to the fatigue
and forgetfulness we deal with daily.

In the early 1930’s medical scientists discovered a neurotransmitter
they called Substance P which  is a protein found in the brain and
spinal cord.  Its function is to cause pain and its role has been
expanded as knowledge about it has evolved to the point where
researchers believe it is involved in the integration of pain, stress
and anxiety.

Substance P regulates sensory mechanisms and it causes pain if applied
to the cut ends of sensory neurons and is thought to be responsible
for some of our sharper  “nerve pains”.

Abnormally high levels of this substance have been found in patients
with fibro, accounting for the constant pain throughout the body.
Excess levels of Substance P can cause pain signals even when there is
no reason for such a signal to be sent.

This neurotransmitter not only causes high levels of pain but also
causes sensitivity amplification, meaning that those who suffer from
it are hypersensitive to smells, sounds, lights and vibrations.  In
other words, our bodies interpret touch, light and sound as pain.

There is a term for the cognitive and memory problems among the
fibromyalgia community.  It is called “fibro fog”, and we do feel as
if we are living in a mental fog constantly.

This includes short term memory loss, and the inability to focus or
concentrate, and of course we are constantly losing things, mainly
because we may put our car keys in the freezer, or a package of meat
in the laundry, or forget words for common everyday objects.
It makes for an interesting life for family members who live with a
fibro sufferer, as my husband can readily tell you.

If you are thinking this sounds like the normal aging process that
everyone goes through  with senior moments, etc.,  even medical
experts will tell you that these symptoms become  exponentially worse
for the fibro patient than what is normal for a person as they grow
older.  And these characteristics are also true of younger fibro
patients, not just senior citizens like me.

There is no specific treatment for fibro.  Some people find relief
from herbs and other natural alternative means.  Several drugs have
been approved to treat fibro but the side effects make them
prohibitive for many of us

Living with what is referred to as an “invisible” disease is very
difficult.  People say we “don’t look sick” and we are often accused
of malingering by those who don’t understand that it is a very
destructive and debilitating medical condition for us and our
families.

This column is not intended to be considered medical advice but
hopefully it will answer some questions or provoke you into consulting
with your physician if you think you or a loved one may have
fibromyalgia.

We all hope the day will come when there will be more funding for
research, and a cause and a cure for fibro will be found.  That is why
it is so important that we recognize Fibromyalgia Awareness Month each
year in May as an educational tool for our society.

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