My name is fibromylgia

[Sassie Mama]

Hi..
My name is Fibromyalgia
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 & 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 & Energy ran around together & had fun?
I took Energy from you & gave you Exhaustion.
Try to have fun now!
I also took Good Sleep from you..
And in it's place, gave you Brain Fog.
I can make you tremble internally..
Make you feel cold or hot when everyone else feels normal.
Oh yeah, 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,
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 sleep and exercise properly I will go away,
Told to think positively
Poked, prodded, and MOST OF ALL..
Not taken seriously as you feel when you cry to the doctor..
How debilitating life is every day.
Your family, friends & coworkers 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 used to do 20 YEARS ago"
Not hearing that you said 20 DAYS ago.
Some will just start talking behind your back,
While 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
except the minority of us,
who like me,
have support from their husband & their immediate family.
Sincerely, Your Invisible Chronic Illness,
FIBROMYALGIA
This is the best way i can find to describe my life now. but like i always say.. i have Fibromylgia but it doesn't have me and it never will.!!!

[kcredden]

Excellent post, Sassie.

[Foxy]

I am diagnosed with Lupus, you know what is funny? I have been comparing the 2 and I am not sure what have, but I do know that Lupus is not a recognized disease with the Social Security offices however fibro... is. There is a test for Lupus, nothing for fibrom...... go figre.... wait it IS the government... there is no figuring.

[kcredden]

Agreed, Foxy. The goverement...bah

Know what's irritating too? I'm in essence a non-diabetic because my a1c readings are in the 5x range. However insurance hears the word 'diabetic' and I'm automatically in the high-risk area. They think I'm a brittle T1 who's loosing my kidneys, eyes, and feet.

It's - irritating - to say the least.

- Kc

...... go figre.... wait it IS the government... there is no figuring.

[towboatinwife]

I have been living with fibromylgia for about 5 years now. I am lucky in that I dont have it really severe but I do have my days. I think that the hardest thing is that people dont understand. I even have this in my own family. They think that Im lazy or a baby. They just dont realize how bad the pain can get sometimes. And its not only the pain its the constant exhaustion. I am 27 and some of the older neighbors in their 70's and 80's do more things than I can do. I really like all the attention and commercials that are just now coming out for this and maybe the education will help people understand more.

[Sassie Mama]

Towboatinwife, I completely understand what you are saying.I'm 45 years young but there are times my body feels like it's 80 yrs old. I have a son in the 4th grade this year and i made myself a promise that i am going to walk into his high school graduation and walk down that aisle when he get married. So i keep myself going each and everyday. I have to.!!!

I have been dx'ed with Fibro for 6 yrs also and i'm very lucky to have a good doctor that understands my pains and tries his best to help me.But i did have to see another doctor for something else and we got to talking and he told me like so many of them do that it's all in my head. Was it all in my head that one morning that i couldn't get out of pain cause i couldn't move my legs.( scared me to pieces to).and was it all in my head when i keep asking my family the same questions over and over again cause i have fibro fog sometimes and couldn't remember the answers??. I don't think so... ok the last part was lol. some of our medical doctors just don't understand it or don't want to .. i don't know. When i was dx'ed with Fibro the doctor gave me a sheet of paper with a picture of a ladies body and asked to put a check mark every spot on my body that hurts and out of 18 spots i checked marked 15 pressure points at the time. And he gave me vioxx at that time and i was taking it like crazy. Then i finally woke up and stopped taking the them. Now i only take meds when the pain is unbearable. And with winter being my worse season i'm fixing to stock up hehehe.

Thanks for everyone responses. I like to use the Internet to get the word out if you will about Fibro and all chronic illlness and hopefully together we can get the message out that this is real and we DO hurt!!!! ...latersss

[Maxwells]

I have a sister-in-law with this and she is in pain all the time. And I do believe it is a disabling diease....and just to think people that are obese can actually draw a disability check for being obese...COME ON people...Well that does it..I am going tomorrow for my crazy check..all the things I have had to put up in my life..I need one.

[kcredden]

I just heard the commercial you all mentioned, and remembered you. I don't believe it's 'all in your head'. I was just reunited with a friend of 10 years, whom I remembered she too has been diagnosed with this. We haven't seen one another for about 4 years (cause of my own personal problems) and when I saw her, I was - to say the least - shocked at how she looked.

You know...how easy it is to pass these things off to psycopasmtic illnesses. But how can we really say it's such, unless we experience it ourselves? Just because we know of no cause, just because we've never had the symptoms, or felt something like it, can we dismiss it? Or say 'it's a choice?'

Better hold off, I may be skating on thin ice here.

Just know this; I believe, and hope there's a cure someday, and soon.

- Kc

[ducklady]

Never judge someone until you have walked a mile in their shoes. I have fibro and I am not lazy but I hurt all the time. It's a scary feeling when you are filling out a check and you have to ask the cashier what to put on the signature line???????? It's not old farts all the way!!!!!!