Friday, June 01, 2012

Pain of Fibromyalgia- IT IS REAL

By learnFMnow Saturday, January 02, 2010

As a registered nurse of about eighteen years and a fibromyalgia patient of about six years, I know pain.  I know him firsthand as a monster that plagues myself and millions of others everday of our lives.  Do I need sympathy?  No.  Not sympathy.  However, I do want to be believed.  The doubts of fibromyalgia attacks our very integrity and dignity.  No one wants to live in pain and have their own family and friends added to the public opinion poll which says "Fibromyalgia is a waste basket disease which people make up".

 

The evidence is no further than the google button if you choose to type in "fibromyalgia research 2009".  I say the year 2009 because strides and strides were made with university medical studies on the disease most of us call "The Beast".  Brain imaging techniques have actually "seen" the pain signals being sent to the brain without any outside stimuli.  My meaning is that the pain is there though no one has beaten me when I feel as if my entire body should have bruises. 

 

The evidence has not only come in the form of the visual images of pain on brain scans.  Evidence mounts also in the area of neurotransmitters.  Neurotransmitters are those chemicals each of us have in varying levels.  The most common one is serotonin.  I must mention norepinephrine and also dopamine.  Just in the last year studies have shown that fibromyalgia patients have lowered levels of dopamine.  This particular chemical is also off balance with diseases such as Parkinson's.  We have altered levels of serotonin, norepinephrine and several other chemicls.  Go ahead.  Google away if you believe I am not telling the truths.

 

Levels of a chemical labeled "substance P" is also in very large abundance in the central nervous system.  Yes, we all have substance P.  It is responsible for the transmission of pain signals in the brain.  Fibromyalgia patients have an over abundance of substance P.  This is partly responsible for our pain. 

 

Studies have also shown in the last year that grey matter in the brain dissipates at higher rates in those of us plagued by the disease called fibromyalgia.  This little tid bit of information explains much about why we have impaired congnitive processes.  Perhaps it is why sometimes we can swear we have alzheimers.  Memory and concentration as well as balance and coordination are added to the problems of pain with fibromyalgia.  And not only our brains age more rapidly, but our entire bodies tend to do the same. 

 

I am writing here just a very few facts about the disease we call "fibromyalgia".  I am quite sure some would like for me to shut up.  My answer is "NO".  I won't.  I am an advocate and also an activist in my own soul about the education of fibro and the removal of the stigma attached thereof. 

Anonymous
Callie
1/ 4/10 12:18am

I am a college student at the University of Oklahoma and I am so glad that you wrote this article. I was diagnosed less than a year ago, but I am very strong willed. I have started the Chronic Illness Awareness Association on campus and love that people like you help me prove to others that I'm not alone. We're not alone. Thousands suffer and we are worth belief and a cure. Thank you again so much.

 

Callie Hansen

ciaa.weebly.com

1/ 4/10 12:43am

You are so welcome sweetie.  Literally millions now have FM.  I believe the last count I had from the internet it was 10-15 million of us.  It amazes me that so many of us have this disease.  I wonder if it was always this prevalent and everyone was just assumed to be hypochondriacs.  Or.... is there some increase in the prevalence because of something in our environment now.  Perhaps the stress of modern life.  Perhaps chemicals in the environment.  I don't know.  But there sure are alot of us around.  I believe finally someone is starting to believe us because we are seeing alot of research now.

I use to live in Tulsa Oklahoma.  You are not far from where I lived for a large part of my life. 

Bless you for starting an chronic illness awareness assoc.  I believe that is great.  Everyone is aware of other diseases but somehow shun those of us who are ill with diseases they cannot see.

Thanks again.  Use any of my writing in any way you want to.  If it helps to show someone what we go through then please use it.

hugs from East TX,

Debra

Anonymous
Elizabeth
1/ 4/10 9:52am

Thank-you for writing this article!  It expressed everything I feel as a person recently diagnosed with Fibromylagia and dealing with the stigma of the disease.  My family seems supportive but I wonder sometimes what they are truly thinking. It is still very difficult to hold up my head and say I have Fibromyalgia when I feel like I need to elaborate or explain my condition like some defense attorney! 

 

I will be forwarding your plea!

 

 

Anonymous
Anonymous
1/ 4/10 6:00pm

Yeah, good luck with all that. My family gave me NO support whatsoever . I was diagnosed in 1992; and have been on strong narcotic meds since, I've been on the Fentanyl patch 100 for 7 yrs now. They refused to discuss it and made smart remarks about my meds, always questioning the authenticity of my claims. In 1999, my mother died and the rest of my so called family deserted me. I will have nothing ever to do with them again. My inlaws are the same. So I stay away from them, and have my husband give my apologies. HE is the only one who has supported and stayed by me. He sees what I live with every day; and yes it does take a lot out of a marriage too. But I'll be damned if I have to defend myself and try to talk people into believing me all the time.  Family or not, I will not defend myself against this. I dont know what most families do, but I'll bet my screwed up family isnt the only one out there. Sad to say their lack of support has made my life miserable-physically & mentally.

1/ 4/10 6:09pm

No, many people will never believe us.  Never.  No matter what.  But I am too angry about the disbelief at this point to give up on at least trying to reach a few people who might decide to open closed minds.  But I understand what you mean.  I get tired of it also.  It seems pointless at most times.  The blank stares, the lack of give a crap etc....

sorry you are in such a mess with this stuff.  It is very painful both emotionally and physically.

Debra

1/ 4/10 6:21pm

Thanks Elizabeth.  I just think that we might reach a few people here and there who might open their minds.  It is worth a try.  And I am not really writing for anyone I know.  I am writing for people in general.

thanks,

Debra

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By learnFMnow— Last Modified: 09/23/11, First Published: 01/02/10