more about my daughter with FM//Jodi(VERY LONG)

[Guest guest]

Thank you, Jodi, for your offer of support. , I'm not sure what

brought her FM on. She developed quite normally as an infant/toddler,

walked at 10 months, potty-trained at age 2 because she had to be like her

big sister. She has no developmental problems and gets very good grades.

She had straight A's for the first time during the 1st quarter because she

had only missed one day of school.

I got my FM diagnosis in 1998 when Allie was 4. I went through a

nervous breakdown basically over not being able to work anymore, and

realizing that I wasn't going to be able to be the " supermom " and

" superwoman " that I wanted/expected of myself. One night, I couldn't stop

crying for hours and the girls overheard me saying that they would all be

better off without me. Well, it really had an impact on Allie. She has my

sensitive personality that can be hurt easily, but also very loving and

caring.

I started noticing depression symptoms in her about age 8. She felt

like she didn't have any friends at school, no one to play with at recess,

and she didn't want to go to school because of it. So we worked with the

school counselor, eventually got her into some private counseling, and I

asked her pediatrician about depression. I asked if it was possible at

Allie's age(8) to have an inbalance of seratonin in the brain, and the doc

said most definitely yes. So she was started on Zoloft. She was on this

med off and on for the next bunch of years.

One of Allie's most troubling, frustrating symptoms is that her skin is

sensitive. The seams on clothes drive her nuts, along her legs and arms.

In 4th grade, she wore shorts to school the whole year long. When her

teacher expressed concern that she wasn't dressing properly for our cold WI

weather( I thought, well, DUH!), I gave a talk to her class explaining a

little bit about FM and why it made Allie need to wear shorts instead of

long pants. She was able to wear snow pants over her shorts at recess. The

kids in her class commented on 2 things. They wanted to know if they could

catch FM, and after being told they couldn't, they were really envious of

the fact that Allie got to wear shorts even in the winter. LOL!

Around this time, Allie and I both began taking guaifenesin per the

protocol recommended by Dr. St. Amand in his book, " What Your Doctor May NOT

Tell You About Fibromyalgia. " I was never sure if it was helping me or not

because fatigue is my worst symptom, but we did see an improvement in

Allie's skin sensitivity.

In 5th grade, she could wear pants again.

We both drifted away from taking the guai eventually and her skin

sensitivity came back. She began wearing 2 pairs of pants(knit type pants,

no jeans) to school in 6th-7th grade, one inside out and the other right

side out over it. And along with puberty, she became more self-conscious

about her weight and appearance. I had surgery in March of 2005 that led to

about 18 months of a depressive spiral that kept me pretty much in bed the

whole time, and coming to a head around Oct. of '06. Allie also became more

depressed and a couple times said things like she didn't want to live, or

we'd be better off w/o her. Yikes! So, back into counseling and school

counseling, and an appt. with a pediatric psychiatrist. He changed her to

Cymbalta, 30 mg. a day. She improved quickly and was embarrassed about

those suicidal statements, said she'd prefer if we could just put those

behind us.

Last summer she couldn't remember to take her Cymbalta, so we just

stopped it. She's a pretty typical 8th grader now. She doesn't like being

overweight, but when her pediatrician mentioned that going back on her

Cymbalta might help her with weight loss, she still didn't want to go back

on it. I bring it up from time to time, but she's not willing yet. To

handle her skin problem, she wears tights under her jeans, and never wears

shorts even in warm weather.

I haven't talked about her physical pain yet. She mostly gets pain in

her ankles, knees(has hypermobility), and low back. When she was diagnosed

at age 10, the docs put her on amytriptalene, but we did not continue with

it past a few months. She takes Tylenol or ibuprofen for her pain, and

benadryl for sleep if she needs it. And every once in a while, she has a

day where she's worn out and hurts all over and needs to sleep.

My main reason for seeking the diagnosis when she was 10 was because we

have a state law in WI that only allows 10 days of absence from school

without a dr's excuse. I thought if it was in her records that she has this

chronic condition, I wouldn't have to run her to the dr. everytime she

missed school once we were past those 10 days. Well, not so. I still have

to do that. Most of these dr's visits are for colds and viruses, not FM

symptoms.

This school year she is up to 7 days on the absence count. This is

still only about half of where she was at in 7th grade. She will be

starting volleyball in March so that will be good for her. She has a couple

of " best friends " in her grade and is looking forward to starting high

school in the fall. She will be taking honor's classes. As a student, she

is a wonderful change from her older sister, who just doesn't care very much

about being responsible.

Well, this was quite a book!! Now, I'm probably too worn out to do many

other posts. LOL! I am feeling a bit better today, but guess what, it's

snowing AGAIN!

Take care.

Jeanne in WI

(P.S. I've put a picture of my family in the photos section on the website,

listed under Jeanne in WI. Allie is the blond. She is taller than her

sister.)

> Dear Jeanne and ,

> My dtr has cfs and fibro.. She had symptoms since 5 yrs old however

> was not diagnosed till she was about 11. Mostly she suffered dizzy spells

> with low blood pressure and always had difficulty in school. She slept

> alot and couldn't get up in the morning frequently due to tired and

> dizziness.She did graduate high school and goes to university in her 3rd

> year which has actually taken her about 5 years due to limiting her amt of

> credits per semester.Any questions you may e mail me. I don't know if you

> guys have your daughters in any special programs for students with

> disabilities. If they are available to you which they should be they

> should qualify by law for these programs.

> Jodi M.

>

>

> Jodi (JEM)

>

> Jeanne,

>

> Thanks so much for the warm welcome. What brought on your daughter's FM?

> Did she have any developmental issues when she was little?

>

> I'd love to compare notes.

>

>