TeenFibro - or teenage fibromyalgia. It's real, it's scary, it's elusive, it's manageable. This is our story.
For the past several years, my daughter Kalen Marie, suffered from various and curious symptoms. She was in pain, she was tired, she was depressed, she couldn't get out of bed, she was scared, she was angry. Sixteen and feeling completely at her wits end.
As a practiced Mom of teenagers (5 prior to Kalen), I thought I had seen the worst of teenage malaise, but Kalen seemed to be proving me wrong. I had not experienced anything like the frustration both she and I suffered through as doctor after doctor sent her home with no diagnosis, no advice and non-verbalized messages that this was simply a lazy, stubborn teenager.
After a few good months, Kalen applied to Rotary International for a year abroad as a Rotary Exchange Student. We were honest about her past illness and the non-diagnosis, and Rotary accepted her. Kalen was off to Brazil!
Once in Brazil, her symptoms seemed to subside for a very short time, I think the adrenaline and excitement simply helped her to forge ahead in spite of her pain and exhaustion. However, it wasn't long before the same symptoms that had kept her in bed on those early high school mornings returned, and Kalen was in pain and scared and feeling very alone in Brazil.
She KNEW her pain was real. She KNEW her body was tired beyond normal. She KNEW her depression was affecting her life in many ways. She KNEW something was wrong, but over and over again in the past, doctors, parents, siblings and friends had almost scoffed at her repeated complaints.
It was hard for all of us to understand, because one day Kalen was fine...and the next she could not get out of bed. We were not sure what to think, but the common mentality was "she is just a teenager."
But the reality was, she was "just as teenager, with undiagnosed fibromyalgia".
In Brazil, Rotary rallied and three doctors separately diagnosed Kalen with fibro. It was a relief and a concern. Finally there was an answer, but the answer was permanent. It wasn't going to go away. It wasn't a pill that would heal everything.
Kalen cried. She cried from relief. She cried in fear. She cried mostly because finally her family, her friends and her teachers and doctors knew that she was not just making excuses, she was not just complaining for attention and she was NOT "just a teenager."
She had fibromyalgia. And from the day of her diagnosis, it's been a daily effort to reclaim her life and combat the irritants that affected her psychologically and physically - from her diet, to her way of thinking, to her level of activity.
Everything changed in that instant, and it changed for the better. Now almost eighteen, with a year in Brazil under her belt and a new way of living life, Kalen is thriving. She still has her down days, but they are less often and less intense. Now that she understands why she feels like she does, she can take steps to minimize her stress, her overexertion and her pain.
This blog is to help others discover that life can be good and fun, even as a 'teenager with fibro".
We are looking forward to a growing conversation among anyone affected with or by fibromyalgia, but especially those who are dealing with "TeenFibro."
"It takes courage to grow up and become who you really are." ee cummings (and you can do it!)
:) JeannieB
As a practiced Mom of teenagers (5 prior to Kalen), I thought I had seen the worst of teenage malaise, but Kalen seemed to be proving me wrong. I had not experienced anything like the frustration both she and I suffered through as doctor after doctor sent her home with no diagnosis, no advice and non-verbalized messages that this was simply a lazy, stubborn teenager.
After a few good months, Kalen applied to Rotary International for a year abroad as a Rotary Exchange Student. We were honest about her past illness and the non-diagnosis, and Rotary accepted her. Kalen was off to Brazil!
Once in Brazil, her symptoms seemed to subside for a very short time, I think the adrenaline and excitement simply helped her to forge ahead in spite of her pain and exhaustion. However, it wasn't long before the same symptoms that had kept her in bed on those early high school mornings returned, and Kalen was in pain and scared and feeling very alone in Brazil.
She KNEW her pain was real. She KNEW her body was tired beyond normal. She KNEW her depression was affecting her life in many ways. She KNEW something was wrong, but over and over again in the past, doctors, parents, siblings and friends had almost scoffed at her repeated complaints.
It was hard for all of us to understand, because one day Kalen was fine...and the next she could not get out of bed. We were not sure what to think, but the common mentality was "she is just a teenager."
But the reality was, she was "just as teenager, with undiagnosed fibromyalgia".
In Brazil, Rotary rallied and three doctors separately diagnosed Kalen with fibro. It was a relief and a concern. Finally there was an answer, but the answer was permanent. It wasn't going to go away. It wasn't a pill that would heal everything.
Kalen cried. She cried from relief. She cried in fear. She cried mostly because finally her family, her friends and her teachers and doctors knew that she was not just making excuses, she was not just complaining for attention and she was NOT "just a teenager."
She had fibromyalgia. And from the day of her diagnosis, it's been a daily effort to reclaim her life and combat the irritants that affected her psychologically and physically - from her diet, to her way of thinking, to her level of activity.
Everything changed in that instant, and it changed for the better. Now almost eighteen, with a year in Brazil under her belt and a new way of living life, Kalen is thriving. She still has her down days, but they are less often and less intense. Now that she understands why she feels like she does, she can take steps to minimize her stress, her overexertion and her pain.
This blog is to help others discover that life can be good and fun, even as a 'teenager with fibro".
We are looking forward to a growing conversation among anyone affected with or by fibromyalgia, but especially those who are dealing with "TeenFibro."
"It takes courage to grow up and become who you really are." ee cummings (and you can do it!)
:) JeannieB
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I hope your daughter is doing well. I can related, my fibromyalgia started when I was in High School as well. I just wished that I had gotten a diagnosis then , not over 15 years later. My diagnosis of fibro came as a shock, releif and a concern as well.
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