This is the Face of Fibromyalgia [Awareness Day 2009]
I know a lot of you may not be interested in this video but it’s really important to me and it would really mean a lot to me if you didn’t ignore it. Fibromyalgia is “characterized by chronic widespread pain, multiple tender points, abnormal pain processing, sleep disturbances, fatigue and often psychological distress.” (National Fibromyalgia Association) the exact symptoms as well as the severity of them vary from patient to patient, but the big three are chronic widespread pain, extreme fatigue, and sleep problems. It is impossible to tell how bad another person’s pain is ever, FM is no different. The best way that has been come up with to describe what it’s like to have FM to someone who doesn’t have it is to imagine the last time you had a very bad flu, you ached all over and you felt so weak and exhausted you wanted to sleep forever. Throw a few more symptoms in there and you have the closest thing to experiencing severe FM. The problem with FM is that it is an invisible disorder, so people don’t look sick a lot of the time and medically things look normal on tests. More intensive studies of people with FM show some brain abnormalities, but nothing that can definitively point to FM. A lot of people don’t believe FM is real. With new drugs being approved and intensive advertising campaigns, the issues have come to the forefront. Respected institutions such as the New York Times all the way to random people on Youtube have expressed their suspicion over whether it’s “all in the patients’ heads” and whether they are just seeking attention, are in no more pain than an average person and just can’t **** it up, or whatever. Obviously I am bias. if you’ve watched the video, you know that I was diagnosed with FM when I was 14. but i was showing symptoms as young as 9 when i had the first acute episode (an extended flu) but I had always had intense growing pains and knots in my back. concern wasn’t shown till i was 13. I encourage you to watch this video and learn about FM because 3-6% of the world population suffers from this condition. Many people I talk to about it go home and tell their families only to find out that someone close to them has FM as well and they had no idea. SUPPORT IS THE BEST THING YOU CAN GIVE A PERSON WITH FM OR ANY OTHER CHRONIC ILLNESS. I don’t want your sympathy but I do want you to think before you say something about FM…Before you judge I encourage you to think about what it is like to be told when you’re 14 that you will be in pain for the rest of your life, that you’d have to take multiple medications every day to manage it, that you’d have to do less than other kids your age, that you shouldn’t hope of being cured, that all your dreams were shattered. AGAIN I DON’T WANT YOU TO FEEL SORRY FOR ME!!! I see FM as a blessing in a lot of ways because it taught me a lot about life and myself, it made me a much stronger, much more caring person. and i know that there are a lot of people out there sicker than me, so i am grateful that it’s not something worse. but i do want to help get rid of some of the ignorance. I have come to be strong and not listen to people who wanna discredit us (at least to an extent) but 14 year old me wasn’t, and I don’t want one other person out there to have to deal with that. In addition, i wanted to challenge the stereotype that we’re all the ladies in the Lyrica ads because if you’ve seen the ad, you can see I clearly am not. I am 18. I am not a fat middle-aged woman (the new york times FM profile). THIS IS THE FACE OF FIBROMYALGIA. on another note, I want to say that the pictures of when i was really sick, I know i look horrible, and i had a long battle with myself over whether I should post them because I usually don’t show them to anyone, but i thought it was important in telling the story, so no need to point it out. if you have questions, let me know! (hate or mean comments may be deleted, i haven’t decided yet) Please don’t take this as medical advice either, if you think you or someone you know has FM do more research first…most importantly, ask a doctor. thank you for watching, and I hope that next time you hear negative stuff about FM you’ll think twice before just accepting it. songs: Believe – Suzie mcneil A Little Bit Longer – Jonas Brothers Stand – Rascal Flatts if you wanna discredit my point by what music i used that’s your problem, but i just did the songs that i felt captured the feelings of chronic illness the best. *NO COPYRIGHT INFRINGEMENT INTENDED. ALL CREDIT FOR THE SONGS AND PICS THAT AREN’T MINE GO TO THE RIGHTFUL OWNERS* the pictures in black and white and the specialist labels and medical test pictures are not mine. all the others are. (New Can’t Stop was posted yesterday check it out)
Tagged with: Fibromyalgia • Fibromyalgia Association • National Fibromyalgia
Filed under: Fibromyalgia
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i see a psych twice a month. shes the best one ive been to. unfortunately for you, you had to see tons of doctors. i saw my PCP she reffered me to a rheumetologist and we spent 30 mins answering questions and she came to the conclusion that i had fibro. i was so happy. i was ALWAYS called over dramatic. growing pains. i was doing it for attention. you know what happens..it still. upsets me to this day that no one ever believed me..still they sometimes dont :’(
oh my god.. im 15 i have fms i was 14 at the time june 22nd 2009 they started me on gabapentin and i had a migraine for a month straight because of it was taking 1200 mgs a day of it and had to go to the ER and they DEBATED FOR 45 MINS WEATHER TO GIVE ME VICODEN…i had sunglasses on the lights were off…and they wont give me lyrica or cymbalta or ANYTHING BUT I KNOW 13 YEAR OLDS WHO ARE ON IT…im not on any meds currently other then the narcos i buy because im so fed up with this…
Hi Lizzie, you’re brave, I wish I had the strength not to let my FM control my life.
Love the video.
I just want to say thank you for your video i am a 39 year old mother of 5 who was just diagnosed a year and a half ago before that i was treated for depression and wanted to die daily now i struggle to want to stay alive day to day hoping one day there will be hope for myself and so many others that are like us thank you for giving it a face that people will actually care about and maybe listen to you are doing a remarkable thing and i appreciate it from the bottom of my heart Jennifer Butcher
because the girl Ive spent this whole video telling you about is me. National Fibromyalgia Awareness Day is May 12th. This years theme is Fibromyalgia Affects Everyone and chances are someone you know has fibromyalgia. So check out fmaware org for more info on FM and what you can do to help, and feel free to message me or comment because I have no problem answering questions. Im FMawareare you? Thanks for watching and caring! NewL30 a.k.a. Lizzie
There are still many people, even some doctors, who do not believe FM is real. It is estimated that patients wait an average of 5 years for a correct diagnosis. Treatment is basically trial and error, often with little improvement. For some people the most effective treatments are not covered by insurance because they are considered alternative. I know the effect that FM can have on not only the patients but also those they care about
Shes had ups and downs, good days and bad days. This year she is graduating from high school. She was accepted early decision to her first choice college and plans to go away to school next year 6 hours from home. Shes made some amazing friends that have been there for her even as her social life suffered due to fatigue. And she is committed to spreading awareness and eliminating the ignorance that caused many classmates to mock her and doctors to ignore her
She most likely will be taking these or similar medicines for the rest of her life. And she fears she wont be able to live the life she wants to. But in a lot of ways it changed her for the better. She started living more in the present because she had seen that planning too much and too far can just set you up for disappointment. She learned that life was too short to worry about little things and that you have to appreciate what you have before its gone. And mostly she became stronger
Her entire life plan, her dreams, her goals had to be altered. She no longer remembers what its like to not be in pain all the time. Having developed a skin sensitivity, she is forced to wear a baseball cap anywhere there is florescent lighting (including compact fluorescents a.k.a. energy efficient lights) She currently take 2 medications daily specifically for the FM and inhaled steroids for chronic sinusitis which may or may not be connected to the FM
By the end of 8th grade she had missed almost half the year and there was talk about having to homeschool her. But she managed to graduate middle school and go off to one of the toughest high schools in that nation. Since the diagnosis shes had to drastically change her life. Having once dreamed of playing college and professional basketball, she was never able to play basketball again. She once defined herself as the athlete, and now she spent more time on the sidelines than actually playing
The diagnosis may have been the end of one battle, but it was also the beginning of another. There was an is no cure for FM and at the time there were no approved treatments. Now there are only 3 drugs approved, none of which are approved for children. She was told at the age of 14 that she would be in pain for the rest of her life. She was very sick, always pale except for a bright red rash on her nose and face, always in pain, unable to sleep, and unhappy.
Then the girl went to one of the best pediatric rheumatologists in the city and country, and found her answer: fibromyalgia. Fibromyalgia can basically be characterized by chronic pain throughout the body, sleep problems, fatigue, and a variety of other symptoms that vary depending on the person. It affects an estimated 10 million Americans and 3-6% of the world population. It is normally diagnosed in women between the ages of 20 and 50. The girl was 14 at the time of diagnosis
. MRI: unremarkable, no diagnostic purpose. CT scan: unremarkable, no diagnostic purpose. Ankle x-ray: no damage, no diagnostic purpose. Arm x-rays: initial hairline fracture but long healed, no diagnostic purpose. All blood tests from things ranging from leukemia to diabetes to RA: either negative or inconclusive, no diagnostic purpose. Test of treatment: 3 Advil, 3 times a day absolutely no effect on pain. Neurologist: some people are just in pain and you just have to deal with it
and she felt as though she couldnt walk as she tried to get ready for the day. She collapsed on the ground in tears before even reaching the bathroom. Once the pain had spread to her right side, thus having affected every part of the body, everyone knew something serious was going on. Now they just had to figure out what it was. Over a period of 8 months, it took 8 different doctors from a variety of different specialties, and almost every medical test, and multiple physical examinations
and that doctor started the hunt for a reason for her pain. She constantly wore a splint as she attended OT and her doctors searched the books for an answer. And then the pain began to spread. She was alarmed one day when she couldnt turn her neck to look at the TV behind her. Then one morning she woke up and it felt like there was broken glass in her back. Then one morning she awoke feeling sick as always, but this morning her legs were in extreme pain
One routine ankle injury, one routine broken arm later, the girl broke her left arm and there wasnt anything routine about it. She was playing a friendly game of basketball during recess at acting camp when a boy pulled her arm behind her back. She was running the opposite way and was jerked back by the boys force. After chipping the elbow, her doctor was stumped as to why her wrist hurt so bad and wouldnt stop hurting, so she found a new doctor
A mysterious flu that kept in a bed for over a week went away as mysteriously as it had appeared, allowing life to carry on as normal for the girl, but it was the first sign that something was wrong. That something wouldnt appear again until just before the girl started 7th grade at age 12. The girl was hospitalized with what they feared was appendicitis after complaining of intense abdominal pain. She was kept for 3 days before being released with no diagnosis as to what had caused the pain
it’s gonna take a number of comments so bare with me lol.
I want to tell you guys a story of pain, of sadness, of sickness, and of fear, of triumph, of strength, of friendship, and of a fight, through its wins and its losses, but most importantly, of a very real girl, who had nothing but the brightest dreams, and the will power to achieve them. The most athletic girl of the class whose life began to change when she was just about to turn 10….
If you don’t mind, would you write out all the words.
hi sorry I took so long to respond. Unfortunately I can’t change the font color without redoing the whole video. i’m so sorry. if there’s a part you want me to write out for you I can… i’m very sorry again but i just don’t have time to redo it. let me know if there’s anything i can do.
i’m sorry you feel that way.
this video wasn’t supposed to be about fantastic production value. It was about telling my story, letting others with FM know that they’re not alone, and maybe making people more aware of the condition. The music I picked had lyrics that expressed the feelings of living with a chronic illness. I would be more offended by your comment if it weren’t for the 69 other comments. I know that to the people it really matters, others with FM, this video was a success.
Shit music ontop of still images.
The **** is it with sick American ****** and this kinda bullshit ‘tribute’ style production??
No offense, but this is the worst video on the internet.
Hi Lizzi. I loved your video. On Facebook I started a cause called “Help find a cure for fibromyalgia.” I added your video as a link.
-Samantha Weir
Phoenix, AZ
I have FM. Thanks for the video and spreading the word. Goodluck with everything in your life!