what is fibromyalgia

[Guest guest]

his is a e-mail I received from a friend. I found it

informative. I hope noone minds if I re-post it here for others:

*********************

FIBROMYALGIA

As many of you know, ****** has fibromyalgia. A lot of folks

dont know a lot about it, and might have friends or family who have

it. Believe me, they are not whining, or faking or

hypochondriacs.....so if yall know anyone who might have this,

please share with them. Perhaps folks will have a better

understanding.

Hi, My Name is Fibromyalgia, and I'm an Invisible Chronic Illness.

I am now velcroed to you for life. Others around you can't see me or

hear me, but YOUR body feels me. I can attack you anywhere and

anyhow I please. I can cause severe pain or, if I'm in a good mood,

I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took

Energy from you, and gave you Exhaustion. Try to have fun now! I

also took Good Sleep from you and, in its place, gave you Brain Fog.

I can make you tremble internally or make you feel cold or hot when

everyone else feels normal.Oh yes, I can make you feel anxious or

depressed, too.

If you have something planned, or are looking forward to a great

day, I can take that away, too. You didn't ask for me. I chose you

for various reasons: That virus you had that you never recovered

from, or that car accident, the stress full life you've lead, or

maybe it was the years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor

who can get rid of me. I'm rolling on the floor, laughing. Just try.

You will have to go to many, many doctors until you find one who can

help you effectively. You will be put on pain pills, sleeping pills,

energy pills, told you are suffering from anxiety or depression,

given a Tens unit, get massaged, told if you just sleep and exercise

properly I will go away, poked, prodded, and MOST OF ALL, not taken

as seriously as you feel when you cry to the doctor how debilitating

life is every day.

And then what to them are words of encouragement... " Think

positively, " Your family, friends and coworkers will ask you how you

are doing and will all listen to you until they just get tired of

hearing about how I make you feel, and that I'm a debilitating

disease. Some of them will say things like " Oh, you are just having

a bad day " or " Well, remember, you can't do the things you use to do

20 YEARS ago, " not hearing that you said 20 DAYS ago.

Some will just start talking behind your back about how many

meetings you are missing or how they don't see you out in service.

Maybe you are getting spiritually sick, maybe you need a shepherding

call, while all alone you slowly feel that you are losing your

dignity trying to make them understand, especially when you are in

the middle of a conversation with a " Normal " person, and can't

remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I

guess you already found out . . . the ONLY place you will get any

support and understanding in dealing with me is with Other People

With Fibromyalgia. Some of you reading this HAVE Fibromyalgia. Some

of you may think something is wrong and perhaps you might identify

with the message and realize what you have IS real. Some have never

heard of Fibromyalgia but you might know someone with the symptoms

or this may give you a better understanding of someone who has told

you they have it I think the message explains it pretty well.

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).

" Fibromyalgia is not something we would ever choose to have, but if

we have it, we must reach a point where we accept the condition as

part of ourselves.'' -- Mark J. Pellegrino, MD, Inside Fibromyalgia,

p. 213

A letter to those who don't understand FM

'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, hypochondriac, 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, Balfour, described Fibromyalgia. Over the years,

it has been known as chronic rheumatism, myalgia and fibrosis.

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

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

face, chest, arm, 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,

clean my house or go out in service but I can't. Please do not take

this personally. If you saw me shopping in the mall yesterday or

dancing at a gathering but I can't go to the meeting tomorrow or get

the dishes in my sink done 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. At times 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, etc. 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. It is

like your inside have become a bowl of Jell-O that shakes

uncontrollably, as the cold rips through your body like a sharp

knife. My internal thermostat is broken, and nobody knows how to

fix it.

7. My depression - Yes, there are days when I fight against how I

would rather stay in bed, in the house or die. As for my

prayers...I don't pray for Jehovah to ease the pain when I'm

depressed. I ask for Him to end my life if I can't fully be doing

his will. What good am I if I cannot be used for what he purposed

me for. And then I get depressed because my cry for help to be

remembered when someone has a bible study or return visit they can

take me on is forgotten. When I cannot be on the school because of

fear my memory will be acting up or that I could be sick on that day

and not make it. How I hope the friends understand when I don't

comment or how very hard it is when I do and how depressed and

useless I feel when I don't. 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.