: A letter to those who don't understand FM

[Guest guest]

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 Edenburgh,

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.

Rheumatoidarthritis 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.

May God continue to provide each of us with a measure of

STRENGTH, WISDOM and PEACE.

elaine