A LETTER TO THE HEALTHY WORLD.....

[Guest guest]

Dear " Newbies " ,

I thought this " old " post might help you in any way of

understanding your own health and to explain Fibromyalgia to others

whom you are in contact. ~~

" A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND

FATIGUE "

(Author unknown--to me--maybe I forgot--LOL)

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!

THINGS TO KNOW ABOUT THE SYNDROME

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. 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

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 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 can 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.

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