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 physical
and emotional problems. Because you didn't know how sick I was, you called me
lazy, a malingerer, or simply ridiculous. 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
1. FMS is not the
newest fad disease. In fact, it isn't a disease at all, and it isn't even new.
In 1815, a surgeon at the University of Edenburgh, 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.
2. The many physical and emotional problems associated with FMS are not
psychological in origin. This is not an "all in your head" disorder. In 1987,
the American Medical Association recognized FMS as a true physical illness and
major cause of disability.
3. Syndromes strike life-long athletes as
viciously as they do couch potatoes. They can be disabling and depressing,
interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT
1. My pain - My pain is
not your pain. It is not caused by inflammation. Taking your arthritis
medication will not help me. I can not 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
2. 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.
3. 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
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.
clumsiness - If I step 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.
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 don't make me open the drapes or
listen to your child scream. I really can't stand it.
intolerance - I can't stand heat, either. Or humidity. If I am a man, I
sweat...profusely. If I am a lady, I perspire. 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.
7. 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. Your sincere concern and
understanding can pull me back from the brink. Your snide remarks can tip me
over the edge.
8. 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. Everyday stresses make my symptoms
worse and can incapacitate me completely.
9. My weight
- I may be fat or I may be skinny. Eitherr 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.
10. 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
knot-filled. If I can stand the pain, regular massage can help, at least
11. My good days - If you see me smiling
and functioning normally, don't assume I am well. 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.
uniqueness - Even those who suffer from FMS are not alike. That means I
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.
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
of the over 10,000,000 people with FMS, but it 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.