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FMS Forums › General & Support › The Mayo Clinic and The NIH say Fibro is Real.
10/12/2010 07:16 PM
SomewhereInCalifornia
SomewhereInCalifornia
 
Posts: 356
Member
I'm an Advocate
The Mayo Clinic and NIH (National Institute of Health) say that Fibromyalgia is real so where do people get off saying that you all have an imaginary disease?

Need proof to back you up? Well, here are their links:

http://www.niams.nih.gov/Health_Info/Fibromyalgia/ default.asp

http//www.http://www.mayoclinic.com/health/fibromyalgia/ DS00079

I am beyond sick of people on this site being told that Fibro is not a "real" illness. I have my own serious autoimmune conditions and almost died because of being dismissed as a hypochondriac.

My therapist said to me that there are plenty of people out there who don't look obviously sick: like people living with a heart condition.

Here is my new motto:

Being chronically ill is not for weaklings.

Laughing -Cali

p.s. If my "motto" makes it sound like we are weaklings-uh oh. I don't think it does but I want to know. It should speak of being strong. If anyone wants to add their own version, have at it.
Reply

10/12/2010 07:25 PM  Top
cindychap
cindychap
 
Posts: 218
Member
That is where I actually got diagnosed for sure. My pain physician thought I had it, but thought my chronic pain was from all my hormone deficiencies from the hypopituitarism. I was up there in August at Rochester for my hypopit and it ended up one of my hormone levels was a lot better and one was coming up also, so they did not think I had hypopit, but the endocrinologist up there diagnosed me with fibro. They actually have a 3-day program up there for fibro patients that she wanted me to stay for, but they could not get me in until 2 weeks later and I could not spend that much time up there and had to come home.

10/12/2010 07:31 PM  Top
ginaleigh
I hear ya loud and clear,and obviously agree.You go girl!Thanks.Needed that.

10/12/2010 07:47 PM  Top
MissStacey
MissStacey
 
Posts: 14847
VIP Member
I'm an Advocate
Who needs the Mayo Clinic to say a syndrome that's been around since the 1800's is real? Tongue
I suffer from Rapid Progressive MS, Lupus, Fibromyalgia, Epilepsy, Migraines, Neuropathy, IBS, Narcolepsy, Arrythmia, Arthritis and too much more complete list on profile.

"Just because we have the right to disagree with a person, does NOT give us the right to disrespect that person."

I'm not currently active due to many personal and medical issues. I will not be participating in MDJ for awhile, my thoughts and prayers are with everyone. I hope everyone is well and I appreciate all of the thoughts, kind words and messages. I have tried to respond as much as possible and apologize if I have not gotten back to everyone. Love & Hugs, Stacey

10/12/2010 07:55 PM  Top
ginaleigh
I sure know it is,feelin it!Ya know?

10/12/2010 08:29 PM  Top
cindychap
cindychap
 
Posts: 218
Member
When I was up there I did not know the Mayo Clinic had been around that long. My mom had plenty of time to read its history while I was in and out of visits and procedures.

One thing is for sure, they check you from head to toe. I went up there for my hypopituitarism and came home with about 3 other things wrong with me.

10/13/2010 12:29 AM  Top
raynedae
raynedae
 
Posts: 8219
VIP Member
When I was a GL I used to send people to a NIH website for a tutorial on fibro for their loved ones who doubted them. It has two slide shows and a PDF file you can print out.

Here it is if anyone is interested:

http://www.nlm.nih.gov/medlineplus/tutorials/fibromyalgia/ htm/index.htm

I do not understand doctors and amateur doctors (like most of my sisters!) who doubt that it's real or that I have it. I also have a cousin, an aunt and a niece who have been diagnosed with fibro. It runs in families and my sister and her daughter got mad when I suggested my niece might have it. But when she's posting on FB that she's in pain from her two-year-old throwing herself on her--well wouldn't you think fibro too? She's also tired all the time, she has insomnia and cleaning her house wipes her out. She even works for a doctor...but she doesn't "believe in fibro". Ooooookay.

rayn

I am not a medical professional so please exercise common sense when it comes to my advice.

I am also NOT a lawyer so exercise common sense when it comes to my advice.

I was a bookseller so you can trust my advice regarding books :)

www.operationbeautiful.com

10/13/2010 04:14 AM  Top
SomewhereInCalifornia
SomewhereInCalifornia
 
Posts: 356
Member
I'm an Advocate
Stacey,

My father thinks the Mayo Clinic is gospel........so, that's how I came up with that one. I know that there's also Merck Manual online and many others. But boy-oh-boy don't I wish that there was nothing to prove and that people got it. Ya know, we autoimmunies all too often get no respect either.

But it has definitely contributed to my sophisticated but kick-ass personality. Tongue

-Cali

Post edited by: SomewhereInCalifornia, at: 10/13/2010 04:17 AM

10/13/2010 05:25 AM  Top
Clarita
Clarita
 
Posts: 10831
VIP Member
Fantastic post- love dynamic ones like this, right up bat girl's street WinkSmile!

Massive extra gentle amazing Hugs to You Cali, love ClaritaSmile( feisty British bat girl fibro warrior)Silly thank you in sand


Previous discussions I participated in:
Struggling lately
Hi I am a newbie
HOTquotes

10/13/2010 11:59 AM  Top
Natalia5150
Natalia5150
 
Posts: 3632
VIP Member
BRAVO CALI!!!!!

What a great slogan!!!

Being chronically ill is not for weaklings

You are my new FibroWarrior Super Hero of the DAY

actually you are my first but hey who's counting....

gentle hugs and a peck on the cheek,
Natty


I am an RN with a current license since 1984....sheesh that's a long time....but that doesn't mean I am a DOCTOR
I dispense advice freely but you should take it with a grain of salt and do your homework and check with your doctor.
He gets paid more so he must know more. Right?

I am truly sorry your are reading my post, because it means you are here at MD Junction instead of out skydiving or deep sea treasure hunting or climbing Mount Kilimanjaro.......

Empyema-
Fibeomyalgia
Hashimoto's
IBS=if you have to ask you don't want to know
severe osteo arthritis, spine/neck
DJD hips r knee some fingers
hypoglycemia, which is every bit annoying as hyper
otherwise not so serious if you pay attention
too many meds to count but for our purposes here:
Lyrica is back Yay!
Cymbalta
pain meds
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