Fibromyalgia Teens Online Support Group

My Story...

Over 10 years ago I started noticing that I had pain in my back and spine. My mom dismissed it as growing pain or as stress brought on by my parents resent divorce. The years went on and my doctors in Indiana knew nothing of fibromyalgia so they labeled me as being a hypochondriac at 7 years old. In years to come if I had pain I took some Advil and went on. It was not until I got to middle school that my pain went from moderate to severe. I was put in the hospital for my spine being so bad I couldn't move then I was put in a wheel chair and set home to be called a cripple.. It was at this time that the hypochondriac label was removed. I never though I would be able to walk again and everyone said there was no way to ever say I would walk again. I knew if I tried hard enough I could do it that I just needed to push through the pain. I would go to the park and practice getting up and walking with the rail on my side to help hold me up. The pain was unreal... I worked little by little until finally I could walk on my own again with less pain. But the pain never truly went away. Then when I was 14 my mom took off to Las Vegas and my dad got emergency custody of me. When I moved out to Philadelphia. My dads wife had always thought I had been faking it and that I just needed to toughen up. The I went to my new doctor and told her what was going on and that I just wanted the pain to be bearable. I had symptoms of widespread pain (mainly in my spine),fatigue, shortness of breath, irregular and rapid heart rate, migraines, constipation,depression (caused from always being in pain), and severe dizziness. My doctor sent me to a pain specialist at the Children's Hospital of Philadelphia. Where I did test after test. Then after 12 years of waiting I got answers. I have fibromyalgia. I'm now 18 years old and am on 400 mg of Gabapentin (the more generic form of lyrica). My pain is now well controlled and I don't have to live with my now ex step mother anymore. I live my life in pain but the pain does not control me anymore. I control the pain.

I hope after you have taken the time to read my story you will write your own so that maybe someone else will be able to relate to your story and it will give them hope because if it's something I have learned with living every day of my life in pain it is that we all need a little hope to light the darkest times.

~Annie

P.S. Thank you again to the person who said I should share my story. You have inspired me and given me hope.

Wow that is quite a story. I am amazed you got out of the wheelchair and started walking all on your own. You are a true inspiration. Sorry it took so long for us to notice this post. Truth is we only recently found where these unanswered were. Ok so If you have heard my story before feel free to skip reading below and then post your own story:

I was 12 years when a major trauma interupted my childhood. My very best friend, we even shared the same birthday, was brutualy murdered. She was stabbed repeatedly by her step dad while she was hugging him. Not only that, but he killed her little sister, and her mother. Her little brother was actually able to talk him into not killing him. So he kidnapped him. (This happened on Halloween). Which scarred me from halloween from then till my son was 5 or 6. I never celebrated or decorated for halloween. I relived in my nightmares what I knew happened. I thought up different endings where my friend survived. Needless to say I went into a depression that my parents never figured out. When I was in 9th grade, 3 years later, I realized I had been eating food to comfort myself. I decided to stop. I lost 40 lbs. with Slimfast. Needless to say I looked good when I went to college. My pains began at age 12 after my trauma. I got incredibly sick to my stomach every day. The school counselor was so clueless. She thought I was trying to skip classes or tests. That went on and off for the rest of middle school. When I was in high school I started having the orthopedic problems. Ankles, knee, and wrist. I wore casts, splints & slings. Until I hit age 17. Then I got my diagnoses.

That's it in a nutshell. Please share your stories.

Love ya,

chickiepoo

Annie - that is quite a story! Very impressive, and inspiring!

Chickiepoo - I had no idea! I'm am so very sorry my dear! You are so brave.

Love you both,

Annamarie

annie and chickiepoo, your stories are amazingg and you are both so freaking strong <333

alrighty here is my story

i was never able to do sports because i am blind in one eye and they didnt want me to be hit in the head and be blind in both eyes. so i did ballet for a while and i tried gymnastics when i was real little (i got kicked out for not paying attention hahah) and i really wanted to be a cheerleader all my life. so for christmas when i was in 7th grade, i got a gift certificate for my local gymnastics gym. of course i went to take a cheer/tumbling class. after the class finished, there was tryouts for the allstar/competitive team. i made the highest team of my age group. i sucked at tumbling (i shoulda payed attention when i was little) but i made up for it with my stunting and cheering/dancing. i was just so excited to be apart of something as a team.

i stayed with the team until the end and then i had to leave because it was to expensive. luckily by that time i was going into high school and so i tried out for my hs cheer team. i made it and went through the season flawlessly. it was awesome to already have a group of friends the first day of high school.

so when i went to try out my sophmore year. because i was a veteran, i volunteered to be a flyer so the freshman girls who were trying out to be bases could tryout without worrying about a new flyer. thats when hell broke loose. they dropped me, which isnt a big deal ive fallen/been dropped MANY times before and never hurt myself. but this time one girl dropped my foot like ur supposed to but the other held on to my right foot causing me to fall from 6 ft on my right knee. it hurt but it wasnt horrible. i told her what to do next time and went back up. i was dropped again the same way and again. by this time my knee was as big as a grapefruit and it was bloody and it was locked. i was out for the day (i had to be carried out)and i vowed to come back the next day.

i went to tryouts the next day and made the team on one leg. it woukd not stop hurting and i went through 4 mris dozens of xrays, ct, everything you can think of. i think you guys can guess the end of this story.

after that, my mom pulled me out of cheer and the injurys kept happening. first my right foot, then my left, then my wrist, then my hip and then what i see now as my first huge flare. they thought i had mono as the quick mono test showed up positive. i was out for 3 months. i went through 2 years of hell untill i finally went to mayo where they diagnosed me with early onset/juvinille fibro and exercise induced asthma.

hope you guys arent bored out of your mind after reading this!!!

love mandie

Mandie - you're way too tough!

My story isn't nearly as interesting. I had an eating disorder, threw off my body, and about a year later I started having intermittent flares - mostly fatigue - that only lasted a few days or so. I would miss a few days of school, be back for a week or so, and miss a few more days.

Then, near the end of 10th grade, I flared and didn't get better. I spent a few months in bed, and started feeling a bit better. I spent the summer recovering, went back to school with a paired down schedule, and managed decently for a few months. But, I kept getting worse, and worse, until I was down to two classes. Eventually I stopped going to school all together. And that's about where I am now.

I'm not functional, but I am pretty happy that's what really matters, right?

Love you girls!

hahah my story was more boring than yours!!! hahah im suprised you even finished it due to its boringness (if thats a word) and girl u are so much more tough that i am. love you!!!

Haha, not true! Lol - I could never get dropped like that and keep going!

Although, i have to say, to live with this pain everyday, we're all pretty tough! Which is important to keep in mind.

That's probably the best thing that came out of my last hospital stay - I learned I'm not weak. When I had that stupid ng tube down my nose, everytime my doc came in, she said she expected to find me really upset, but I was always smiling. Living with fibro everyday, I definitely sometimes doubt myself - so it was good to hear them say that (I think they meant it, but it could just be what they say, lol!)

Anyways, just remember that! You're all super strong, don't ever doubt it!

Love you girls!

Post edited by: annamarie180, at: 10/03/2010 09:00 PM

Wow Mandie you are pretty tough. I'm just amazed. I stand in your awesomeness. It is ok for me to stand by you right? I promise not to pick you up. lol Sorry couldn't resist.

I love you, you're my hero. Ok just had to get that out of my system.

Love you girls,

chickiepoo

See Mandie - you are so tough!

Lol - Chickiepoo - you're so sweet! I can't wait until Mandie sees this!