Fwd: Fibromyalgia-- Real and Invisible--- repost for Tigger..... not a chain letter

[Guest guest]

debra van ness wrote: To:

Fibromyalgia_Support_Group

Date: Sun, 18 Nov 2007 10:29:01 -0800 (PST)

Subject: Fibromyalgia-- Real and Invisible--- FORWARD THIS TO EVERYONE YOU

KNOW

This will be simplfied into time periods of days. But please remember,

" days " described as following will actually represent anywhere from a few months

to 5 or more years. If you know anyone with Fibromyalgia or have heard of anyone

with this illness, please take the time to read this. It is intended to spread

AWARENESS of an illness that affects at least 6 million Americans alone. It also

affects people from every other nation world wide. Fibromyalgia is most common

among young to middle aged women. But it also strikes men. It lashes out at

people of every race, ethnicity, age, religion, and socioeconomic class. The

following symptoms are only a few. Others suffer from chronic insomnia,

irritable bowel syndrome and countless other diagnoses. The following scenario

is a " lucky " fibromyalgia patient. It actually debilitates and robs millions of

everything they once were. It can put you in a wheelchair or make you bed bound

in the worst cases. It also tends to

get worse over the years without explanation. A few theories exist as to its

cause. However, for the most part it is really not understood as evidenced by

the wide range of possible causes and treatments.

Day 1: You are a healthy person. You are vigorous, young and full of life. You

can get out of bed refreshed every morning, move about without a problem, and

feel ready to face the day. You don't have to anticipate cancelling anything or

changing any plans, because you always feel this way when you have had a good

night's rest. (Unless you get something like the flu which is rare with you and

lasts only a week or so.) This requires no imagination for many people. So you

probably did not have a hard time understanding day 1.

Day 2: You wake up a little more tired than usual. You did sleep a good eight

hours. But you are still a little fatigued. You will say to yourself that you

have just been under some stress lately at work or home. Ignore this day because

it is probably normal to have more fatigue than usual at times. However, you

still function and go to work with a little difficulty.

Day 3: Today you have noticed that your finger tips are kind of tingling. It

only last for a few minutes and comes and goes throughout the day. You are still

more tired than you should be. It is even a little worse than it was yesterday.

Well, a little tingling that comes and goes might be the beginning of carpal

tunnel syndrome. It's common. So you will just have that looked at someday if it

gets too bad.

Day 4: Now the increased fatigue has gotten rough. No matter how much you sleep,

you wake up feeling so tired. Sometimes, your body is exhausted and no matter

what you try, it won't go to sleep. It is not always pain keeping you awake.

Your brain refuses to shut down. Maybe you need some vitamins and a little rest

from work. You go on. Now there is some problem with concentration too. You feel

like you are not fully awake during the day as you go through the daily tasks.

It is as if some invisible " fog " has surrounded you. It is taking more time to

process thoughts. The tingling of your fingers has now become more frequent and

turns to numbness at times. You can't even feel your fingers this morning for a

few minutes. You may have to check into that carpal tunnel stuff pretty soon.

Day 5: You feel like you might be getting the flu. Aches are everywhere. It must

be a virus or something. The exhaustion continues to get worse but at times you

actually feel pretty good. You think " How strange, I felt horrible this morning.

Now I am just a little achy. It must be a virus. Let's take a little tylenol. No

respiratory symptoms are there so it must not be too bad yet " . A few hours later

the exhaustion hits again out of the blue. The Tylenol did not touch the aches.

Still in a fog, you go to bed.

Day 6: The aches are still with you from time to time but disappear for a while

and come back. " Well, isn't that strange. Why does it come and go " ? The

exhaustion is still there 90% of the time, but it lets up too and comes back.

The foggy feeling gets better, but it comes back in a couple of hours worse than

ever. Oh, and the numbness and tingling in the fingers, it is coming and going

too. " What is wrong " ?

Day 7: You decide to go to the doctor. You have told your family about all these

symptoms and they reply " Well, you look fine " . Save for the fact you do have

some dark circles around your eyes and look like you had no sleep, you do look

fine. The doctor tells you all your bloodwork is normal. Nothing seems to be

wrong with you. As he thinks to himself " I must be dealing with a hypochondriac

here " , he tells you to get more exercise and you won't be so tired. And he

probably mumbles to himself that " the aches and pains are your imagination " ....

He is thinking " This patient looks fine and must be wanting attention " .

Day 8: You decided not to mention any of this to your family, friends or co

workers because they already think you are going crazy. You complain about

different symtoms at random that seem to have no connection what so ever. Ouch,

the muscle aches hurt worse today. The fog is back.... hard to concentrate. The

fingers continue to tingle and go numb at times then return to normal. You reach

to grab something today at work that weighs no more than 1/2 a pound, and an

electrical shock sensation goes through your whole hand.

You go to a doctor for the carpal tunnel. He determines you do not have carpal

tunnel.

Day 9: You awaken with a horrible stiffness all over. You can hardly move

because your muscles refuse to bend. Now feeling like you are 30 years older

than your age, you move around in the first hour in a fog with flu like aches.

Oh no, the flu like aches are there everywhere but now accompanied by severe

pain in the knees, elbows, shoulders, wrists and hips. " What is wrong with

me..... I must be going crazy just like others think I am " .

Day 10: Your hands not only have numbness and tingling that is here to stay

today. They now alternate between the numbness and sheer burning pain that is so

excrutiating you want to cry. All over body aches are at the worst. Exhaustion

is not the word for how tired you are. The stiffness is so bad you had to have

help getting out of bed today. The concentration is almost gone while you

stumble around the house in a fog and cry from pain all over. Balance and

coordination are not what they should be. Now you have to tell your spouse and

co workers because you cannot function today no matter what. Tylenol, Advil,

Aleve, Aspirin, hot baths, muscle creams..... nothing is taking care of this.

Now you think to yourself " I must be dying of something " . Now you go to an

emergency room after you go to bed. The pain won't let you rest at all. The E.R.

nurse and doctor now are accusing you of " seeking drugs " . They think to

themselves " No one could feel that bad

unless they have some kind of cancer.... and we only treat emergencies " .

Day 11: You have seen several doctors. 4 out of 5 of them dismiss you and won't

believe you. You are now labeled a " psych patient " . You " just need some

antidepressants or antipsychotics " . And the answer is " NO, you can't have any

narcotics from me. You must be a drug addict if you think I will believe any of

this " . (the doctors' own words).

Now you cry and go home.

Day 12: A physician finally believes you and the diagnosis of " Fibromyalgia " .

You have never even heard this word. Very few have. You look up everything about

this disease and find out you are not alone. Though it is not talked about by

the media, magazines or any other form of mass communication........ at least 6

million others in your country alone suffer with these symptoms. (This

information was learned because you had to " research the word " ). Co workers, (if

you are still able to work at all), family, and use to be friends have all

decided " You don't look sick " . They mumble behind your back that you are

imagining this or that this illness " can't be that bad " . You hear words like

" lazy " because you no longer function like the days before. And this comes with

bouts of insomnia where you can't sleep at all at night. You catch a few hours

of sleep during the day if you can.

Day 13 and eternity: The symptoms wax and wane, back and forth, disappear and

reappear within hours sometimes. You think to yourself " No wonder most people

don't believe this. If I was not living it myself, I would think it was

hypochoria, drug seeking, imagination or a flat out lie to get out of doing

things in life " . Some symptoms are there one minute, all symptoms are there the

next minute, and none are present at times.

AND SOME DAYS YOU WAKE UP FEELING GREAT AND A FEW HOURS LATER.... the symptoms

have returned for no apparent reason you can find. Other days you wake up

feeling horrible and almost dead, then the symptoms go away in a few hours.

Addendum: The person described above is not only myself, but many others who

suffer with a very silent, little known, but worldwide illness called

" Fibromyalgia " . A National Fibromyalgia Association is in existence, but again,

unless you actively look for it, you will NEVER hear about it. We are nurses,

doctors, lawyers, housewives, laborers, educated, uneducated, and any walk of

life that can be thought of.

BE AWARE, we exist, this disease exists, and we live in a silet hell. The

internet can be a valuable tool. This was written solely for the purpose of

circulation to as many people as possible.

By Debra Van Ness R.N. who never heard of the illness until it went full blown

and changed my life forever.

---------------------------------

Get easy, one-click access to your favorites. Make Yahoo! your homepage.