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 suck 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)

Category:

Nonprofits & Activism

Tags:

• National
• Fibromyalgia
• Awareness
• Day
• May
• 12th
• 2009
• This
• is
• the
• Face
• of
• My
• Story

[mercybay]

I too have been dealing with chronic pain since childhood. Then at 28 I got a weird viral infection that left me with full-blown fibromyalgia, so I relate to you deeply. I just want to make one point tho: have you ever been screened for lupus also? Light sensitivity and facial rash on nose/cheeks are very typical of that condition. A friend of mine has it. If you haven't been assessed for lupus, suggest you do. Take care, be good to yourself.

[NewL30]

@mercybay yeah, I've been screened many times for lupus. I have the elevated ANA level (have since at least when I was diagnosed with FM) but the secondary lupus tests have come back negative, so they don't wanna put me on treatment for if those secondary ones are negative since the treatment is more extreme. They even took a biopsy on my face years ago and it came back negative, so they don't know exactly what I have, but they don't think it's lupus.

Thanks!

[hollyxdear]

Hi my name is Holly I'm 19 and have had Fibromyalgia since I was 12. I have not been able to find anyone my age or anyone who has had it since they were in their teens like me. I would really appreciate if you would contact me. I have a lot of questions about just normal things like having a job or going to college. Every one I know who has fm isn't able to work and are at least 20 years older than me.

message me please

[NewL30]

@hollyxdear Hey, I'd be happy to talk to you. A lot has changed since I made this video (I'm working on an update) and I've actually since had to switch colleges cause being away from home was too hard. But I know what you mean. When I was first diagnosed there was like no info out there about younger people, and it's not much better now. But yeah, feel free to message me with questions or whatever!

[cindykron]

Im so sorry that you have so much pain. You're too young to have to deal with so much adversity. I am 46 and know this is what I have and it's unbearable for me on most days. I want to fight to keep the life I have as normal as possible and your story gives me even more will to do this. I look at each day as a gift that I am able to be around the people I love and the kids I teach in my classroom and I will do it as long as I can physically manage it! Keep strong:)

[NewL30]

@cindykron I'm a little late replying to this, but I want you to know that your comment really means a lot to me. I wanna work with kids for a living either in social work or as a teacher, and sometimes I worry that I won't be able to physically. So to know that you are a teacher with FM really gives me hope.  So thank you!

[tyc1016]

Thank you so much for posting this video. Even at 43 yrs old it's still inspiring to me.

[jodyfarquhar]

Beautiful Clip, cried to know you suffer the same pain I do, but I am 50. I was diagnosed 2 years ago but have FM for around 5 years, This I know because of the symptoms as you would know too. I have had several 'traumas' one being an emergency cesarean. Glandular Fever, Shingles but fortunate to catch that within 72 hours so had the injection to cure it!! Also my mother died of lung cancer in 2000. Yes, I believe trauma can cause serious illness, but think there's maybe more? Bless you♥♥♥

[7655kitten]

@NewL30 I too have had fibro since I was a teenager symptoms began around 10/11 yrs old. All I knew is that I was not like other people, bone tired constant pain &sore muscles all the time, all over, headaches everyday, Doctors however, since all of my blood work and test usually came back negative, became my enemy. Its all in your head, or your faking for attention they told me. I feel my life and choices would have been different if I would have known then that I would not be able to

[zitakilleen]

She describes ME, everything I have gone through too. Sadly few friends take time to understand it. I had many aches as a child, shingles twice & glandular fever, then as my marriage fell apart, I was finally diagnosed. No information though, had to look for that for myself, no pain killers, I'm allergic to Apsrin & Paracetamol, so can't take anything other than Codine & Morphine, which are baaad drugs :(

I have fought it back & hidden it for years and will continue to do so, it is the only way.

[01fastrace]

Why do people think fibro is fake?

[nula1998]

@NoX1313 You may have Lyme Disease. Lots of Lyme patients get misdiagnosed with fibromyalgia. A negative blood test can NOT rule out Lyme disease. It's a clinical diagnosis and needs to be diagnosed by a specialist (LLMD = Lyme Literate Doctor). I suggest you watch the award-winning Lyme Disease documentary "Under Our Skin". Excerpts are here on YouTube.

[luvinmarywana]

Its amazing how we find our hero's in the strangest of places, I found mine watching this video. I am 51 and was diagnosed in 1995, but the pain started long before that I started searching for an answer in 1978. You are an amazing young woman and I wish you all the best in life!!! 

[NoX1313]

I just found out that I have FM 3 days ago so im still in the crying at the drop of a hat phase! lol! Its been over a year and a half of testing and docs and im relieved and scared right now. I loved your video though! You really got me when you started talking about how all the test were neg... I just started crying! It just such a hard road to figuring out that its FM. TY for putting this out... it warms my heart to know that there are others out there like me and who understand! ♥