Formerly Known As fibrogirl

Formerly Known As fibrogirl
Birthday
October 20
Bio
I'm 35. I work in a career I love, paint, ski, nordic walk, have dogs, have a boyfriend, read incessantly, crochet, travel, sing in my car, and cook like a dream. I was misdiagnosed with fibromyalgia for the past 4 years and the some of the story is posted here. Having corrected that, I have regained energy and vitality, so I'm not online as much as before. Can't really say "F the medical establishment" enough right now. *Please excuse the mess while I readjust my online identity*

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Formerly Known As fibrogirl's Links

Salon.com
Editor’s Pick
JANUARY 28, 2009 2:28PM

I'm so damn sorry you can't see my pain

Rate: 36 Flag

Evidently, THIS is the face of Fibromyalgia:

 

facesofFM

 

These images are taken from the two pharmaceutical websites that market drugs for FM.  To me, this seems to give the impression to the impressionable that FM is a disease for older women, probably Caucasian, mid to late life in age, with a propensity toward preppy, conservative hairstyles and soccer mom-ish fleece vests.  These women are upper middle class, with good health insurance, and listen to music like Rascal Flatts.

This is me:

hntiu 

Actually, it's a still from the movie "He's Not That Into You" of the actresses Ginnifer Goodwin and Jennifer Connelly taken from the website IMDB.com, but it gives you a good idea.  This is kind of what me and my friends look like when we are having martini's.  30ish, hipster clothing, single, and if I believe CNN, probably unemployed and insurance-less.  

I'm too tired to go out with my friends like the picture might lead you to believe.  I'm the girl that is always leaving early (because of how tired she is) and her friends think she is snubbing them.  I'm that smartly dressed girl with a delightful dash of vintage ahead of you in the grocery line who can't lift her bags into the cart (therefore slowing your progression through the cashier stand).   I'm the one limping down the aisles in the mall, searching for less than stilleto heels and blocking your way by going slow (because my hips hurt too much).  I'm that asshole chick on the treadmill going slow (because if I wear myself out too fast I will not be able to move tomorrow) that is pissing you off because I'm not really working out and there are no open machines.   I'm the one that cut you off on the overpass by the exit because along with FM comes some really great comorbid diseases like IBS that make getting to a restroom IMPERATIVE at times.

To look at me is to not understand how FM affects my life.  Taking stock right now, my neck and shoulders are killing me, I really want to take a nap and I got up 6 hours ago, and I'm trying to decide if I should go out to walk or clean the kitchen because I only have enough energy to do one thing today.  And it will be different tomorrow.

Outwardly however, I look like a healthy, hipster girl, hanging out on the couch with my laptop.  But things like this happen to me:  I was hobbling up the stairs at the King's of Leon show this past Monday and had someone gripe at me because I was going too slow. Like they couldn't hear the crappy opening band from the stairwell anyhow.

I wish the FM community had a sticker or membership ring I could flash in instances like that. 

 

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mortality, tired, fibro

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Rated. More people should read this
My sister has it. I know. I know. It's fucking invisble. And no one gets it. Rated.
There's a real stigma associated with this condition, particularly in the workplace and by insurance companies. I had an employee who hadFM and was considered by some to be a malingerer. She had a real strong work ethic but could not do her job any more. She missed a lot of time from work. We collaborated and created a different job for which she had talent and aptitude. she cam back to work, which helped her overcome her depression. She wasn't in as much pain. this was a big, big learning for me as a manager. This was about 10 years ago. Thanks for posting and rated.
For years I suffered with the diagnosis of Fibromyalsia. I say it that way because I REALLY did believe there was something else wrong with me. The brain fatigue was so horrifying, especially if I had to drive for any distance. My joints ached, my allergies were strange and I slept more than anyone I know. NO ONE understood. Very few people actually believed I was in pain.

About 2 1/2 years ago I had a doctor suggest I be tested for Thyroid Anitbodies. He warned me that it was a weird test that very few doctors did and my endocrinologist would not believe me if it was the problem. Of course, my antibodies were high. I have finally lived 2 1/2 years relatively pain free. He put me on Thyroid. About 125 mcg a day. He tests me about once a year to see if my antibodies have risen and if I start to get tired again, he ups the dose a bit then.

If you haven't looked into it then do.
My best friend could have written this.
Fibro girl,

I wondered last week if your screen name was a reference to the disease. I'm so so so sorry.
I am very close to MS and there are similarities, not the least of which is the invisibility of the disease. Hidden pain. Hidden losses. Hidden tragedies.

I often have wished for something like a sticker or membership ring as well. In the meantime, it serves me well to remember that everyone has something, emotional, physical, psychological.... and if I can 'see' those things without knowing them, I think I am able to be more kind and understanding. (At least I try)

Thanks for the post and wishing you a better day tomorrow.
My husband has M.S. and you could be describing a part of his life; so you speak for many with hidden pain.
Having non-visible ailments really sucks. I have a few and so do many of my friends.
Yeah... but I've read other materials that you have written, responses to others and responses to me. You have not let FM destroy your spirit. You have a bright sense of humor, a courageous world outlook, and a very healthy self image. I am terribly sorry that you have this invisible affliction, but you an I could hang out anytime.

Do you think you would miss the griping while we took our sweet time on the stairs?
Keep talking about it. It's the only way to get it out there and understood is to keep pushing.

My support is with you as best as it can be in these words. :)
Good post fibrogirl. Same crap happens to me with my RA and its frustrating as hell. Hang in there.
Thank you for sharing. I don't knowabout Fibromyalsia, so your post is eye-opening. You definitely deserve a membership ring.
People can really suck some times. It may be an invisible disease but any idiot can see when someone is physically struggling. A kind word or a helping hand is what's in order in that situation. Not an effort to make the person feel worse about something they can do nothing about.
You could have been writing about me during a bad spell. If it is possible to be blessed while also having FM, that would be me: I have good spells and bad spells. I tend to think of myself has "high-functioning", in that I can go long periods without being thoroughly debilitated. On the other hand, that may be years & years of coping mechanisms (I know I first started having symptoms when I was 11).
I do agree that the images are misleading: I was diagnosed when I was 26. I gave up on the medical community with regards to FM a few years later--I got tired of being told every 6 months that there was nothing they could do to help me.
When they were doing clinical trials just before Lyrica was approved by the F.D.A. for FM, I was excluded from the study because I wasn't "in sufficient pain". I suspect it's simply that I've come to underreport my pain, even when it's bad, because it has been my companion for so long and assume there must be pain far worse than mine (undoubtedly, there is).
I feel for you; I feel for all of us stuck in this weird quagmire of pain and symptoms that no one can see and so many can't believe.
Wordsmith, I'm currently "high-functioning" like you, and the Neurontin my doctor put me on has been helping. My fibro could be the result of the lymphoma (and its treatment) that I had 4 1/2 years ago. I tend to think the manifestation for me is a little bit different because of that. But fibrogirl, I have days like you described as well. I'm just lucky enough to be able to work from home, so I don't have to exhaust myself on a daily basis.
rated. I have mild md, not fm, but I know where you are coming from. It sucks.
Mom and both my sisters have it, so I see it. I feel for you.
One more good reason for stem cell research...
Get a business card made with that graphic from above that reads, "Back off, M* F*! Any more crap from you, and I'll make you feel even worse than I do!"

Give them to assholes who gripe at you or tell you to hurry. You may need to buy a cattle prod to make good on that promise. A Taser, maybe. I've always been pretty scared of those super heavy police flashlights.

There's a difference between being ill, and being weak and baby, you are NOT weak! No one who writes as honestly as you do is weak. You a freaking Super Hero! FibroGirl, Hipster of the New Millennium!

Keep it coming, let the world know.
I wish people like you were louder. I dont mean louder like... RAAAAWWW loud. I just mean like there were more of you so the general public who might not know what FM actually is knew it wasnt just an old person problem. I hope that made sense. *HUGS*
Good post. I had undiagnosed lupus for years and fibro was one of the things they suspected for a while, which made me more aware of it than most people. It sucks being sick and not looking sick! One year at Thanksgiving I was suffering serious heart inflammation and unable to serve myself at the buffet (literally couldn't jam the spoon into the stuffing and lift it out) and my mom wanted to know why I wasn't looking for a second job.

Thanks for reminding everyone that not all serious illness shows on the outside.
Yes, I know what you are feeling. I have an undiagnosed condition for more than a year that has symptoms much like you describe. I am fortunate to have a brilliant doctor who keeps searching and more importantly believing me. Unlike you, I am not young. I can't imagine how I would have felt if this happened when I was your age. You are courageous and luminous. Your feeling must not feel heroic, but I know very well what it must take for you to face each day. You are heroic.
Whether it's related to my Marfan's Syndrome or not, I suffer from Fibromyalgia. If people would take time to read ALL the symptoms, they would realize how debilitating it can be when you are multi-symptom sufferer as you and I are. Yoga has helped me more than any drug ever could. But then that's just me. Breathing and meditation included and self talk.

(rated)
All the best.
First, many thanks to everyone who commented. My spirits have been lifted, which on most days is a herculean feat.

@GregT - My brother has Marfan's also - I don't know what he would do if he also had FM. And you have the double whammy of two diseases that no one ever hears of. If I could give you the Green Lantern power ring, I would.

@wordsmith - I tried to get in the GHB trial they had sometime ago. They said they had a too overwhelming response. I'm now on sonata for sleep, provigal for fatigue, and tramadol for the pain, all which I take on a as needed basis. I'm also heavy into the supplements, we should trade materia medica info someday.

@BarbaraAnne and NFJobless - We need to go for coffee. And shots.

@CatamiteBastard - Now that is strange. FM isn't genetic, and I lean environmental and mistaken diagnosis depending on the day you talk to me as a cause for it. My most recent obsession is my thyroid - have they pressured the docs about it?

@mervie - No. You are heroic. I'm grateful you have a good doctor as well (can I have his number? *smile*)
Oh, I hear you. I hate the TV commercial of the old skinny lady who is giving painting lessons.
I have FM and realize I had inherited it from two aunts and my dad. I have many good days a week but some bad days, too. People think I'm moody, its not that it just hurts to move!
Luckily I have figured out a system, I sort of have a three days "on" and three days "off" and plan accordingly. It works for me but really its hard to have a normal life. I HATE going to family functions because I never know how I"m going to feel and sitting there balancing a plate on my lap hurts.

Thanks for being a brave one and good you've been rated.
What an awful disease. I am sorry you're in pain, and of course no one behind you in line or at the gym has any idea and so you don't get the sympathy or consideration you should. Not to be funny (or maybe a little), perhaps you should have a plaster cast made for your arm, or wear a brace on your knee so people SEE your disability?? Your post is going to make me be a bit more patient in all things.
Chronic pain is something we are told to be quiet about, to have a stiff upper lip. Then we can be told we're courageous and tough. When all I really wanted was for someone to make it stop hurting.
Thanks for this FibroGirl. Keep going. People here care.
As a woman who has both lupus and fibromyalgia, I wish more people would read your story. Thank you for taking the time to post this. Rated.
I dont drink coffee.. but girl we can go have shots. *not the ones with needles *eyes get wide* no needles* anytime..

if you feel up to it we can do a lunch box.. its the best drink ever for I cant afford to go out and get drunk with you tonight bc really you just need that one drink and your set! its awesome!!
So with you on this as many others on this thread.
Especially hurtful is the attitude by coworkers who once liked you but now trample you if you cannot keep up with the herd. Most folks have no empathy at all.
The cast or crutches could be a good prop.
And elavators! Don't get me started on that!!!!
bless you
so well conveyed. i'm so glad som one is putting detales of this condition out there. so cool. i was diagnosd w/ fibro and CFS and som thinng else after radiatun killd my immun system. never understoood until becam real to me. this 3rd rond of radia is not so bad, not so diffrent from how i feel most days. the limitd enrgy, the pain, etc. and the cfs causes fevers, etc. that dont respond to meds.

sory didnt mean to do pity party. not that. jus feel so greatful to hav someone splain wat fibro is like daily. helps me feel les alone and les scard of radiotun becus already liv w/ many side effects.

thanx to you and love love love
Great article.

I'm a massage therapist and I work on lots of people with fibromyalgia. And more who might eventually be diagnosed, but who don't have enough symptoms or haven't had enough tests yet. Doesn't matter for my purposes - we MTs don't do diagnosis and I treat people not conditions - but the number who look like the drug company picture is pretty small. Actually, considering the number of my clients in general who look like that picture, there might be a bit of negative correlation there.

Remember - the picture represents who the drug company wants to sell their particular product to, nothing more, nothing less.