Introduction

February 13, 2008

Hello,

I just subscribed yesterday, My daughter, who is a junior in high school

was just diagnosed a few weeks ago after a teacher wrote me alarmed that

she had miserably failed an exam in a class that she was doing fine in

before. This had followed a year where she had had two back to back

infections after Thanksgiving in 2006 followed by weeks of needing more

than 14 hours of sleep where she missed her exams and had to take them

later. She did pretty well at the beginning of the next year until she got

another infection, and was paralyzed in her thinking during a time of year

when a huge major writing project was due....and all she could do was stare

at the work. We had a sleep study done at spring break, and she was

diagnosed with something close to sleep apnea, but they gave her a cpap

machine, and this made a huge difference in her ability to get to sleep

quickly and that improved her health.

This past fall, she was fine (as per usual) during marching season (she is

in band), but when it stopped, her grades started to fall, so when the

teacher wrote me, I went to the doctor and he finally called it

fibromyalgia and we postponed her exams, but not by much.

What had thrown us off in getting this diagnosed (it was suspected) is that

she never complained of pain, but everything else fit, including the sleep

disorder The big key for us is when she said she always woke in pain, and

she thought everyone else did. Last summer, she had her wisdom teeth out,

and what was very peculiar is that she didn't want pain medication because

she didn't think she was in much pain. That made me wonder if she had a

high pain tolerance.

Now that we review her life, we think she has had fibromyalgia since an

infant, but we and she didn't recognize it because she thought pain was

normal. I have since then talked to a friend who has a child with a

genetic bone disorder where he is in chronic pain, and he also doesn't

recognize pain very well, either, and also has problems with sleep. I

think the brain is recognizing the pain even though the consciousness may not!

When she was a baby, she would scream when you put her on her tummy, and

she never did crawl. She started therapy at eleven months, and when they

tried to get her to move, she would scream like they were pulling out her

fingernails! Also, back then, when I put her down to a nap, if it wasn't

four hours or longer, she would scream like bloody murder for two solid

hours before she would calm down after waking. In the last two years,

waking has been awful for her, but now she recognizes that the problem is pain.

Also, all through her academic life, her standardized tests have been all

over the map, from 99th percentile down to 20%ile once in math. There has

been everything in between, but also many high scores. She has been in a

talented and gifted program, but her recent problems hurt her grades so

much they have put her in " regulars " . Maybe this is OK until we get her

hormones straightened out, but it makes me so sad what she is having to

give up at this critical time in life for planning her future....What

seemed to be happening is that she randomly got her three hardest classes

on the same day and they would assign so much work that she was missing

sleep on a regular basis, like down to 2 1/2 to four hours of sleep

routinely, and that is when she crashed. We had to stop that!

Anyway, I have much else to talk about, but that is my intro.

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February 13, 2008

Welcome . I am so sorry to hear of such a young girl with fibromyalgia. I

wish her the best. It is good that it has been diagnosed so maybe it can be

dealt with.

hugs,

Debra V.

Owens wrote: