Tuesday, July 17, 2012

When You and Your Child Have Fibromyalgia

It's a topic I really hoped that I never had to discuss because the initial research stated that children of Fibro sufferers would not inherit the gene.  It wasn't supposed to happen, but sadly, it has.  Children of parents who suffer from Fibromyalgia are more likely to develop it than the rest of the population. 

Now, as a side note, and FORGIVE ME for going off on a tangent-- but, if my kids can inherit this beast of a gene, let's do the ENTIRE Fibro community a favor and start calling FM a disease and NOT a syndrome because in the loosest sense possible-- if it can be spread-- it's a DISEASE!  Having said that, I will now step nonchalantly off my soap box and continue with the task at hand...

Juvenile Fibromyalgia has not been studied heavily in the US, though there are cases here.  A child usually develops symptoms in their tweens to early teens.  Symptoms include wide-spread muscle fatigue and pain in 5-11 of the classic trigger points that adults have.  Children will also find it difficult to sleep and will also find it hard to concentrate in school.

That's the bad news-- here's the good news.  Once diagnosed, many children recover remarkably with treatments and the symptoms will lie dormant!  That's really good news, especially for me...  And this is why I've been a little silent here and there over the past three years or so...

My oldest daughter is turning 12 this year and she may be following too close in Mommy's foot steps.  She had always had a problem sleeping as a child but I could always excuse it away.  There was either the noisy tenants in our apartment complex downstairs, a police car screaming by in our city, or it was just a "bad" dream. 

I constantly tried to dismiss these episodes to avoid what I probably had already known as truth.  I've always believed that I was born with Fibromyalgia.  I don't think it's something that just develops due to a car accident or some other kind of trauma in life.  I know these things make symptoms worse-- don't misunderstand me-- but I believe those things are only the catalyst.  I DO NOT believe they are the cause.  I think we are born with this beast of a gene-- period.

Our family has had a hellish past few years.  We've undergone a parish priest getting arrested.  I won't fill in the details because I'm sure you can guess why he was, and no, THANK GOD! it wasn't with my child.  We've moved three times due to family needing us closer.  My oldest had to change schools due to this move and the school went from public to parochial schooling.  Close family members have passed either naturally or untimely.  Close family members have also become very ill.  And I'm only tipping the iceberg here because some stuff is just too private to say because it's not my place to say it-- so enough said.

That though is enough for any adult to go a little bonkers, but can you imagine a child of 11?  My oldest started to develop some severe sleep problems along with having some concentration problems at school.  She also would have sharp shooting pains that lasted for only a few minutes and then would mysteriously go away.

The major problem, sleep, was starting to severely affect her work at school so we hauled her off to the doctor who was, of course, greatly concerned since she knows of my history.  We discussed ways of having healthy sleep habits like having warm milk before bed, getting ready for bed at the same time every night, putting on soft, comforting sounds or white noise on, etc.  We've done this faithfully as parents already given my sleepless nights.  The only exceptions are when it's hot and they need an air conditioner or the weather is crappy and they need to get to a lower ground.  Both would rip her from her bed and have her where an AC or lower ground is.  Now, she's a kid and she LOVES to camp out but let's face it-- she's not going to get the most sound sleep because she's in a different environment.  That's just plain fact, but in those situations, it is minimal and she needs to be safe.

HOWEVER, there are other times when her dreams have awakened her terribly over the course of these past three VERY long years and she can't sleep.  It's reeked havoc on her days at school where I've had to call her out because she was just too tired to go.  This is why I made an appointment with the doctor to begin with.

Her Pediatrician is wonderful.  HOWEVER the sleep clinic doctor could use a few lessons on how to treat patients.  I'm not saying this person sucks at what they do, BUT you might as a DOCTOR want to check what the patient's parents' have ILLNESS-WISE before ASSUMING it's all about stress.

We Fibromites know that our sleep patterns are different and they can't be easily tracked on medical machines.  I truly suspect that this is what my baby is going through because she was bad one minute in life and now okay the next.  I experienced that too.

Stress does A LOT to the body.  It really does.  BUT that shouldn't give doctors free-reign on prescribing crap to us when they don't know what they are dealing with.  Okay-- coming down from the soap box again.

For all of you that are going through the battle of finding out why your child has Fibro, I sympathize with you and understand what you are going through.  I worry each and every day about both of mine.  PLEASE know, I'm here and can relate to all of the misdiagnoses and finger pointing.  Leave a comment or email me personally at Kimberley@kimberleylinstruth-beckom.com if you need and immediate question answered.  I will, of course, continue to post what I can as my child and I go through her problems.

Stay fabulous!
Love and friendship,

Kimberley
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