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!!!!!!

[Sassie Mama]

I had a pm from someone asking me about Fibro so i'm bringing this back up. I will post more about this later today/night.If i can remember lol. :)

[mom36]

I don't and didn't no what alot of my problems where until you brought up this subject. I have been to the doctor and had every test known to man run and they can't find anything. I no the pain is there and I get so tired of complaining to my hubby (Bless his heart, he has to love me), every month it hurts in a different area. I need a doctor who knows what this is, any around here? Is there anything that helps with the pain?

[snowtiger]

Thank you Sassie, that answered a lot of questions I had. Could you PM me and tell me a good doctor that believes in this disease and is understanding? I would like to get checked out, I'm tired of feeling awful all the time and eating Ibuprofen like candy.

On my second night without sleep. Arm and back is hurting and aching all over and I'm OUT of IBUPROFEN!!!:(

[towboatinwife]

Wow! I totally forgot about this thread. I was reading it getting all up into it and then I saw a post that I made! Sad thing is I still dont remember reading or writing this thing. My fibro has gotten just a little worse since this post. Might be the older age or maybe adding another child..lol. Having 3 kids and dealing with this on a daily basis without help is a challenge to say the least. But I can always be thankful that I'm not confined to bed.

[Sassie Mama]

I know exactly how you feel. After my latest surgery i feel like my Fibro has gotten worse as well. Especially in my legs. Sometimes it feels like i have bricks on my feet and all i want to do is stay in bed. I don't give into fibro.I get up and stay up. i mean i keep moving. It just takes me a little longer tho.I can't let it win. By the way, where is my sunshine?? lol. I'm so tired today. I know the rain is good for us and around August we will be praying for rain but with Fibro it seems to depress and make me so sleeping. And sunshine does the complete oppsitie. (check spelling).There is many symptons with Fibro but the biggest is all the pressure points that i deal with.My son and i like to have fun together and he knows that i have this. But we can be poking each other and it's not his fault that his elbows are so sharp that when he hits one of those pressure points if feels like someone just gave it their all and hit the heck out of me. He just barely tapped me. he knows when to stop as well. Which is good. I will post more later today/nite about all the symptons and what i go thru everyday. or sometime this week.

I could do like a journal on the blog then. Instead of this.wow no fibro fog today. hehee. Thanks for all the post.Support is a wonderful thing.

[Bengals_Mama]

I was diagnosed with Trigeminal Neuralgia, it's a facial nerve pain. I've only had like 2 attacks in my life, but the doctor said it's either that or a post reaction to Shingles. I also get nerve pain really bad in my legs, bottom, & feet at certain times during the month. It feels like I'm being burned, or how you feel when a body part "falls asleep". It's not Restless Leg Syndrome though. There's a lot of conditions out there that are pretty common, but misdiagnosed. There's also a lot of doctors out there that just don't have the knowledge, and experience to treat people. I only know what my nerve pain feels like, and to have it all the time like you all I don't know if I could bear it. You are an inspiration, and I will be praying for you.

[towboatinwife]

Jeez I know how you feel. Sometimes the slightest touch you feel for hours. It can bring you to your knees at times. My biggest thing is the exhaustion all the time trying to keep up with a 7yr , 2yr and 8month old gets to ya..

[Foxy]

For fatigue have you all tried ProVigil? I love it! I have SLE (Systemic Lupus) Often confused with Fibro

[snowtiger]

Does that only work for fatigue Foxy?

[Sassie Mama]

First off, I want to thank bengal's mama. you brought a smile to my face. :). Secondly, i've never heard of that foxy and i will ask my doctor about it the next time i see him. thanks.

I started a blog on here if anyone wants to read it. I hope it helps all. One thing i always say is... "Gentle hugs to all my friends". :)

[SilverFox]

I know many doctors don't even recoginze Fibro as a true disease, but I wonder if that is because it is primarily a disease affecting women? (don't know the stats, but all I know who have this are women). For years many female complaints were ignored as being "nerves, pms, etc. The same for "chronic fatigue syndrome". I do know that hormones play a huge role in the health of women as well as how they feel on a daily basis. I have a neice who was diagnosed with a nervous stomach for several years and finally a new doctor did gallbladder testing and guess what? She had her gallbladder removed at age 32 and her nervous stomach disappeared.

[Mt. Olivet Mom]

I was diagnoised with fibro about 5 years ago. Iwent to a rheumatologist in LEX. Dr, Goldfarb is his name. He sent me to a pain management doctor. I started taking Lyrica, but it about caused me to lose my eyesight, one of the side effects of this durg. All the pills they want to give me, puts me to sleep, and what kind of life is that. I want to enjoy my grandkids, and try to live my life.

[Rebelyell]

My mother had lupus and it took 10 or 15 years for her to be diagnosed. Everyone thought she was the biggest hypochondriac in the world.

Some of you might want to look into a drug called Ixel that is sold in Europe. You can legally buy it over the Internet under the compassionate use policy. It works like Cymbalta, except that Cymbalta inhibits reuptake of serotonin and norepinephrin, with an emphasis on serotonin. The effect is such that the serotonin effect is stronger than the norepinephrin effect. Ixel inhibits reuptake equally balanced between the two.

The norepinephrin is what gives energy, focus and makes it possible to ignore pain. It also makes it really hard for some people to pee! Some people love this drug, others hate it. I've never taken it, only read about it, but thought I would pass this on. Certainly worth researching on the Internet.

I don't have anything against self-medication, but if you are taking any other medication you should consult your doctor before taking this one. It could be quite dangerous if taken in combination with another anti-depressant, for example.

[snowtiger]

Thanks for the info Rebel.

[kentuckywoman54]

My sister was diagnoised with Fibro over 10 years ago. She has tried it all. What many people do not understand is this disease affects so many different things. It is an auto immune disease. Which means your immune system is compromised. My sister has found her most help with battling this through the use of homeopatic meds, massage, and pain medication. All depending on what her stress level is like at the time. For her stress elevates her pain levels a great deal. She lived in Florida for many years and moved back up North to Indiana 2 years ago. The winter cold has certainly been hard on her, but as she says if she can keep her legs from getting cold she can tolerate it pretty well. I have had a doctor tell me that I probably have it as well, but for now I will continue to ignore that...LOL I just know that this is a real disease , it's not in a person's head, and the government should recognize it. But then the government should also recognize that a person with stage 4 cancer just might need their medicare right away and not have to wait 2 years for it. Of course the reasoning behind that issues is ovious the governemt hopes you will die before they have to give you the medicare for medical.....go figure..


May God Bless each of you as you go through your days and help you to endure your pain and to overcome all your trials with this disease.