A
letter to the Healthy World From
The Land of Chronic Pain and Fatigue*
A
letter from _______________(fill in the name of the person who suffers
from Fibromyalgia) If you were born with healthy genes, you may know me
but you don't understand me. I was not as lucky as you. I inherited the
predisposition to chronic pain, fatigue and forgetfulness. I was
diagnosed with fibromyalgia (FMS) after months, years or even decades of
mysterious illness. Because you didn't know how sick I was, you may have
called me lazy, a hypochondriac, or simply trying to get attention. If
you have the time to read on, I would like to help you understand how
different I am from you.
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
©1997 www.fibrowelcomepackage.com