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 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 ABOUT FIBROMYALGIA

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 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.

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 ME

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 is real.

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.

4. My 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.

5. 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 don't make me open the
drapes or listen to your child scream. I really can't stand it.

6. My 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. 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.

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
temporarily.

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.

12. My 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.

Author's 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.