what you should know about me

[Guest guest]

Got this off of www.fibrowelcomepackage.com

Such good inf for family, friends etc and letters to give to people

who donot understand what Fibro is.This is my al time favorite.I even

give to my dr's too. heidi

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~