Evidently, THIS is the face of Fibromyalgia:
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:
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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Comments
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.
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.
Do you think you would miss the griping while we took our sweet time on the stairs?
My support is with you as best as it can be in these words. :)
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.
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.
Thanks for reminding everyone that not all serious illness shows on the outside.
(rated)
All the best.
@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*)
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.
Thanks for this FibroGirl. Keep going. People here care.
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!!
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
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
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.