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Perhaps
the cries we hear most often are, "My family doesn't
understand!", "How can I explain to my
employer?", "What do I tell my kids?", "My
husband/partner/spouse thinks I am lazy.", "My friends
tell me to relax and ignore it!" Below are some ways others
have handled this and also some ideas from the experts!
What
To Tell Family and Friends
One
of the hardest things about fibro is making others UNDERSTAND.
This page shares some of the letters and other ways fellow fibro
sufferers have explained this to their family and friends:
A
letter to the Healthy World From
The Land of Chronic Pain and Fatigue*
*Click Here To
Print Out Letter*
WHAT
YOU SHOULD KNOW ABOUT FIBROMYALGIA
FMS
is not the newest fad disease. In 1815, a surgeon at the
University of Edinburgh, William Balfour, described fibromyalgia.
Over the years, it has been known as chronic rheumatism, myalgia
and fibrositis. Unlike diseases, syndromes do not have a
known cause, but they do have a specific set of signs and
symptoms which, unfortunately for the patient, take place
together. Rheumatoid arthritis and lupus are also
syndromes.
The many physical and emotional problems associated with FMS are
not psychological in origin. This is not an "all in
your head" disorder. However please remember, stress
can affect the body, just as physical pain can affect the mind,
causing stress and depression. If someone needs help in
coping or dealing with depression, they should see a therapist
or Psychiatrist, but it does not mean they are
"crazy." It may help you to find methods of
coping!
In 1987, the American Medical Association recognized FMS as a
true physical illness and major cause of disability. It is
recognized as a disabling condition by the ARTHRITIS FOUNDATION,
THE SOCIAL SECURITY ADMINISTRATION and the MAYO CLINIC, among
others.
This syndrome may strike life-long athletes as viciously as it
does couch potatoes. It can be disabling and depressing,
interfering with even the simplest activities of daily life.
WHAT
YOU SHOULD KNOW ABOUT ME
(Keep in mind that these things may apply to some, not all of
fibro patients)
My
pain -
My pain is not your pain. It is not caused by
inflammation. Taking your arthritis medication will not
help me. I cannot work my pain out or shake it off.
It is not even a pain that stays put. Today it is in my
shoulder, but tomorrow it may be in my foot or gone. My
pain is believed to be caused by improper signals sent to the
brain, possibly due to sleep disorders. It is not well
understood, but it is VERY real and very painful.
My
fatigue -
I am not merely tired, I am often in a severe state of
exhaustion. I may want to participate in physical
activities, but I can't. Please do not take this
personally. If you saw me shopping in the mall yesterday,
but I can't help you with yard work today, it isn't because I
don't want to. I am, most likely, paying the price for
stressing my muscles beyond their capability.
My
forgetfulness -
Those of us who suffer from it call it fibrofog. I may not
remember your name, but I do remember you. I may not
remember what I promised to do for you, even though you told me
just seconds ago. My problem has nothing to do with my age
(young people can get fibro) but may be related to sleep
deprivation. I do not have a selective memory. On
some days, I just don't have any short-term memory at all.
My
clumsiness -
If I stomp on your toes or run into you five times in a crowd, I
am not purposely targeting you. I do not have the muscle
control for that. If you are behind me on the stairs,
please be patient. These days, I take life and stairwells
one step at a time.
My
sensitivities -
I just can't stand it! "It" could be any number
of things: bright sunlight, loud or high-pitched noises, odors.
FMS has been called the "aggravating everything
disorder." So try to understand if I must decline
certain invitations, or go home suddenly. I really can't
stand it.
My
intolerance -
Perhaps I can't stand heat, either, or humidity. I may
sweat, profusely. Some people cannot sweat at all and so
the heat is even more unbearable! Both are equally
embarrassing, so please don't feel compelled to point this
shortcoming out to me. I know. And, don't be
surprised if I shake uncontrollably when it's cold. I
don't tolerate cold, either. My internal thermostat is
broken, and nobody knows how to fix it.
My
depression -
Yes, there are days when I would rather stay in bed or in the
house or die. I have lost count of how many of Dr.
Kevorkian's "patients" suffered from FMS as well as
other related illnesses. Severe, unrelenting pain can
cause depression, but it is a result of the Fibro, not a cause
of it. Some days I may just feel like giving up.
Your sincere concern and understanding can pull me back from the
brink. Your snide remarks can tip me over the edge.
My
stress -
My body does not handle stress well. If I have to give up
my job, work part time, or handle my responsibilities from home,
I'm not lazy. Every day stresses make my symptoms worse
and can incapacitate me completely.
My
weight -
I may be fat or I may be skinny. Either way, it is not by
choice. My body is not your body. My appestat is
broken, and nobody can tell me how to fix it. Often the
medication I must take causes weight gain, but many of us with
fibro suffer from severe Irritable Bowel Syndrome and lose
weight.
My
need for therapy -
If I get a massage every week, don't envy me. My massage
is not your massage. Consider how a massage would feel if
that charley horse you had in your leg last week was all over
your body. Massaging it out was very painful, but it had
to be done. My body is filled with painful knots. If
I can stand the pain, regular massage can help, at least
temporarily.
My
good days -
If you see me smiling and functioning normally, don't assume I
am well. I am having a good day but I am not cured.
I suffer from a chronic pain and fatigue illness with no cure.
I can have my good days or weeks or even months. In fact,
the good days are what keep me going.
My
uniqueness -
Even those who suffer from FMS are not alike. That means
not every fibro sufferer may not have all of the problems
mentioned above. I do have pain above and below the waist
and on both sides of my body which has lasted for a very long
time. I may have migraines or hip pain or shoulder pain or
knee pain, but I do not have exactly the same pain as anyone
else.
I hope that this helps you understand me, but if you still doubt
my pain, your local bookstore, library and the internet have
many good books and articles on fibromyalgia.
~~~~~~~~~~~~~~~~~~~~~~~
Authors'
note: This letter is based on communications with people
throughout the world, males and females, who suffer from
fibromyalgia. It does not represent any one individual of
the over 10,000,000 people with FMS, it represents all of them.
It hopefully can help the healthy person understand how
devastating this illness can be. Please do not take these
people and their pain lightly. You wouldn't want to spend
even a day in their shoes, or their bodies.
*There
are many letters of this type to be found on the internet. This
one was written specifically for THE FIBRO WELCOME PACKAGE by
Micki and Rose. IF you use it, or share it, please give
credit.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Most books about fibro are written for the patient. This one
is from a different perspective and may be helpful for family and
friends.
"Beyond
Chaos: One Man's Journey Alongside His Chronically Ill Wife
by Gregg Piburn (whose wife suffers with FM among other
conditions). It's not so much about the medical issues of FM
as it is about the role we fall into, and how we communicate with
each other. Check it out!
What
your loved ones may want you to know:
FibroHugs
- A Letter To "Fibromites"
Links to other material which may help family members understand
ABOUT your illness (some of these may be written for people with
Chronic Fatigue Syndrome but the information for families is the
same)
“Overwhelming”
Evidence Legitimizes Fibromyalgia Pain
Advice
for Caregivers and Spouses of Patients with Chronic Fatigue
Syndrome & Fibromyalgia
Fibromyalgia
and Relationships
Fibromyalgia
Resources | C O M M U N I C A T I O N
An
Open Letter to My Family
My
FMS is Invisible, but I'm Not!
Witch
or Martyr?? How to Live with Others
Just
Listen & Hear Me
Fibromyalgia:
"Nobody Understands!"
A
Guide for Relatives and Companions
A
Son's Perspective on Fibromyalgia
Fibromyalgia
and Pregnancy
Youth:
Tips for Parents
Disabled?
You Don't LOOK Disabled!
No
Cast, No Cane, No Pain? Who Is Allowed to Park in Those Accessible
Spaces?
Visible?
Invisible? What's the Difference?
Trying
to Understand how to Help a Friend with Fibromyalgia
Fibromyalgia..in
your brain..not all in your head!
And
now, let's hear what the experts have to say! (Print this out
and have it ready for the next person who tells you it's "ALL IN
YOUR HEAD")
Is
Fibromyalgia Real???
What
a Researcher has to say:
Ordinary
touches multiply into severe pain for fibromyalgia patients
By Eric Benjamin Lowe
Imagine living every day in excruciating pain. The millions of
Americans who suffer from fibromyalgia must cope with this as well as
the doubts of may who dismiss it as a made-up illness invented by a
troubled mind.
But, researchers at UF and elsewhere are beginning to piece together
clues that reveal the physical basis of the puzzling syndrome that
causes severe fatigue and aches, and has defied easy diagnosis.
UF scientists have found an abnormal central nervous system reaction
in those with fibromyalgia. The body magnifies ordinary
repetitive stimulation into an experience of crippling pain.
"This is particularly important because it has been unclear if
fibromyalgia was just an imagined illness or a real syndrome,"
said Roland Staud, MD, an associate professor of medicine at UF's
College of Medicine who also is affiliated with the UF Brain
Institute, "We now have good evidence that shows that it's not a
psychological abnormality, but that there is a neurological
abnormality present."
Staud, who presented his research findings at the annual meeting of
the American College of Rheumatology last November, recently was
awarded a National Institutes of Health grant worth nearly $800,000 to
continue his studies for the next four years. Donald Price,
Ph.D., a professor of oral and maxillofacial surgery in the College of
Dentistry, and Charles Vierck, Ph.D., a professor of neuroscience, are
collaborating on the research. Their goal is to develop a better
understanding of the condition, with an eye toward improving
diagnostic tests and treatments.
An estimated 3.7 million people in the United States - primarily
women, who are diagnosed during their 30's and 40's -- have
fibromyalgia, according to the NH. A chronic illness with no
known cure, its cause also is not known. Researchers have
theorized that an injury to the central nervous system or an
infectious agent might be responsible for triggering it in people who
have inherited susceptibility. Symptoms include persistent and
widespread musculoskeletal pain, fatigue and tenderness in their neck,
spine, shoulders and hips.
Staud and colleagues found the central nervous system abnormality by
conducting a series of repetitive stimulation tests on people with the
syndrome as well as healthy research participants. The tests
involved repeatedly placing warm plates on their hands and arms.
The healthy participants felt the sensation but did not report it as
pain.
For those with fibromyalgia, however, the sensation would magnify with
each repetition into an experience of crippling and unbearable pain.
"When a sensation signal reaches the spinal cord, the signal can
be omitted, changed or augmented," Staud said. "If it
is augmented, then something that is innocuous, such as pressure on
the skin, can then be perceived as a painful stimulus."
Jessica LeMay, one of Staud's patients, has been battling fibromyalgia
since 1993. The 30 - year old Lake City resident said the pain
starts in one area and usually spreads, sometimes becoming
overwhelming.
"I imagine if someone had taken a baseball bat and beaten me with
it, that's got to be what it feels like," she said.
"Depending on the day, I'll just move out of the way if someone
tries to touch me."
LeMay said many people dismiss her condition, not understanding the
"huge difference" between her severe fatigue and the healthy
person's occasional tiredness.
"When this fatigue would come about, it's almost like a weight
being dropped on you, and you can't function anymore," she said.
LeMay said she is hopeful that Staud's research will lead to more
effective treatment for fibromyalgia patients and better understanding
by the general public.
"In our society, you either get better or you die, and
fibromyalgia patients don't do that," she said. "We
don't fit in the mold, so people don't know what to do with
us."~~~~~~~~~~~~~~~~~~~~~~~
Most
people are well meaning but keep in mind that hard as you may
try to explain, NO one can really understand your pain, except perhaps
someone who suffers with fibro also. Try not to get too
exasperated with friends/relatives when they suggest things to try,
tell you get some fresh air or exercise (and you will feel better),
etc. They don't understand and perhaps they cannot. Go to
the message boards or chats, read them thoroughly, but like anything
else, REMEMBER these are the opinions and experiences of others.
THEY may not apply to you at all and often many rumors appear on
message boards -- so read -- but check out everything for yourself
with your own health care provider and research. Join or START a
fibro support group and spread the information in the Welcome Package
around.
God
Bless and Love
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