NEW & have NO IDEA where to begin...guess I'll share my story...(sorry, LONG) :)

[Guest guest]

This is my 1st support group so I'm feeling a little shy & am not

sure where to start with all this. Fibro is such a complicated illness

& there are so many things I'd like to pick all your brains about.

But I'll save the brain picking for later.

First off, a little bit of my history. I'm 34, married, mommy to 1

amazing little girl. We live just outside of Pittsburgh. I was just

" diagnosed " about a year ago. The quotes are because I'm not yet 100%

convinced that there isn't something else going on but thus far fibro

seems to fit. I'm what I'd call a functioning fibro sufferer...I have

good days & bad days. My worst symptoms began approx. 1 & 1/2 yrs.

ago but I knew something was " different " shortly after my daughter

was born Dec. 2005. Actually, I'm not positive if it set in during the

pregnancy or after. I was VERY tired throughout the pregnancy &

started having REALLY bad aches in my arms & hips around my 3rd

trimester... & swelled up like a float in the Macy's Thanksgiving Day

Parade for the last month. At the time I just figured that this is

the way my body is responding to pregnancy & there wasn't anything I

could do about it. I fully expected to feel like my old self again

after my daughter arrived...but I'm still waiting & she's 2 yrs. 2

months & 3 wks. old now. I had to have a c-section because she was

getting so big, I was a week overdue & my uterus was overextended &

was not contracting despite all the inducement methods they tried. I

lost a lot of blood during the surgery & came VERY close to losing my

uterus & almost had a transfusion but they decided at the last minute

not to. The next few days in the hospital I was so exhausted & so

drugged up but I was unable to sleep. I felt then that something in

me was different. Something in my brain just wasn't working

right...like I'd been short-circuited. I got about 2 hours of sleep in

the 3 days we were there & that was only because of an Ambien the

nurse gave me which made me wake up with a " psychotic episode " (as my

husband lovingly calls it) which was really scary. Anyway, the next

few months were spent recuperating & still not sleeping much...but

again, I figured this is just what having a newborn is like, right? So

I did my best & figured it was just taking me longer than usual to

bounce back because of all the blood I'd lost. To try to make the rest

of this long story short, I'll try to condense the rest...

When my daughter Zoe was almost a year old, the onslaught of bizzare

health problems began...one right after the other (or as the dr.'s

like to call then, all the " non-specific " symptoms). Lump in

throat...chest pain...palpitations...fatigue...numbness & tingling in

hands/arms/back...unexplained aches in my neck, arms, legs, hips,

shoulder blades...carpal tunnel...brain fog & difficulty

concentrating/remembering...stomach problems/IBS/abdominal

pain...bizarre periods & breast tenderness... & the hair loss (that

one's my favorite). 3 ER visits ( " there's nothing more we can do for

you maam " )...switched PCP's twice...started regular chiropractor

visits...x-rays, CT's, MRI's, bloodwork all " within normal limits "

(how I hate those words). Always sent home to suffer & wonder. Then

the anxiety set in...which is then blamed for all of the other

problems. I'm sorry, but I wasn't like this before. Something's

different...I can feel it. The anxiety didn't cause it...IT has caused

the anxiety. Had 2 gastroscopies in the last year...revealed GERD &

sm. hiatal hernia. When abdominal pain increased I returned to the

gastro. who not only didn't do any kind of physical exam but his only

suggestion was that " you need to be on Lexapro " (which, when I

insisted upon asking him questions, he repeated to me at least 5

times)...gee, thanks for your help. I finally got in to see a

rheumatologist & she is the one who diagnosed me. Bloodwork there

revealed a slightly elevated ANA but nothing else. Recently had an

appoint. w/an endocrinologist who seemed very thorough but bloodwork

there came back...drum roll please...within normal range! My problem

has been determined by their office as " not endocrine related " , even

though I have a TON of symptoms that point to some kind of hormonal

imbalance. The only thing out of the ordinary in that bloodwork was a

slightly high Alkaline Phosphatase...which I wasn't even informed of

by the endo. but by my chiro. who'd requested copies of my recent

bloodwork. He said that it can mean a lot of different things but

that it definitely shows I've been having some kind of muscular pain.

My newest development is this strange vibrating sensation through my

arms & upper torso that comes & goes. It really has me baffled. It

feels like a vibrating electrical current pulsing through me. I'd LOVE

to know if anyone else is experiencing this!!!

My chiro. is great & does trigger point massage (which I highly

recommend if you can stand it) & has me on some whole food supplements

which seem to have helped a little. I'm currently on Zyrtec-D,

Prilosec, Xanax (as needed & to sleep) & a buttload (can I say that?)

of vitamins. I occasionally take hydrocodone if I'm having a bad spot,

which I've been having recently because of the cold weather. I do a

lot of research on my own & have a lot of theories, but it's so easy

to become overwhelmed by all that... & it doesn't help with the anxiety

either.

My husband is wonderful & supportive, but at the same time, he just

doesn't understand. He's never been sick much in his life & when I

try to describe my aches & pains, I just know he doesn't get it. I'm

sure he gets tired of my complaining, even though he wouldn't say.

He's always trying to get me to be positive... & I try, but again, he

just doesn't understand just how hard that can be when you feel like

you have the flu 24/7. He always thinks that I'm mad at him for

something. I try to explain that I just don't feel well...but I'm

afraid that it's putting a strain on our marriage. He works from home

for a health insurance company & I stay home & care for my daughter. I

don't have much of a support network because my parents are both

deceased & I don't have much in the way of extended family. My

husbands parents help out as much as they can but they live an hour

away. They take Zoe for an overnight visit once a week to help me out.

We've lost touch with most of our friends because they moved & we

moved & well, you know how that can happen. That's why I'm here. I'm

just hoping for some connection with people that can truly understand

what this feels like, to want your " old self " back again, so badly. I

think so much about all the things I used to do. I used to work full

time...have friends...go out, do things...had hobbies...the energy to

clean my house, go for walks & exercise. I know I don't have it as bad

as some others do & my heart goes out to all of you for whom this

disease has become debilitating. I just miss feeling normal. I just

want to feel 34 instead of feeling 74...

OK, I'm done complaining. Sorry this was such a long introduction.

I've been reading some of your posts already & you all seem so warm &

friendly. I'm really looking forward to hearing from some of you & to

being part of this group.

Hopes for good days for all... ~Kandi

[Guest guest]

Welcome, Kandi!

I can't really say that I'm glad you're here! I wish that none of

needed groups like this, but this is a really good bunch. Very loving

and supportive, so you've come to the right place.

You will find lots of information and comfort here.

Please e-mail fibrobook@... if you'd like to share your story

for my book.

[Guest guest]

>

> This is my 1st support group so I'm feeling a little shy & am not

> sure where to start with all this. Fibro is such a complicated

illness

> & there are so many things I'd like to pick all your brains

about.

> But I'll save the brain picking for later.

>

> First off, a little bit of my history. I'm 34, married, mommy to 1

> amazing little girl. We live just outside of Pittsburgh. I was just

> " diagnosed " about a year ago. The quotes are because I'm not yet

100%

> convinced that there isn't something else going on but thus far

fibro

> seems to fit. I'm what I'd call a functioning fibro sufferer...I

have

> good days & bad days. My worst symptoms began approx. 1 & 1/2 yrs.

> ago but I knew something was " different " shortly after my daughter

> was born Dec. 2005. Actually, I'm not positive if it set in during

the

> pregnancy or after. I was VERY tired throughout the pregnancy &

> started having REALLY bad aches in my arms & hips around my 3rd

> trimester... & swelled up like a float in the Macy's Thanksgiving Day

> Parade for the last month. At the time I just figured that this is

> the way my body is responding to pregnancy & there wasn't anything I

> could do about it. I fully expected to feel like my old self again

> after my daughter arrived...but I'm still waiting & she's 2 yrs. 2

> months & 3 wks. old now. I had to have a c-section because she was

> getting so big, I was a week overdue & my uterus was overextended &

> was not contracting despite all the inducement methods they tried. I

> lost a lot of blood during the surgery & came VERY close to losing

my

> uterus & almost had a transfusion but they decided at the last

minute

> not to. The next few days in the hospital I was so exhausted & so

> drugged up but I was unable to sleep. I felt then that something in

> me was different. Something in my brain just wasn't working

> right...like I'd been short-circuited. I got about 2 hours of sleep

in

> the 3 days we were there & that was only because of an Ambien the

> nurse gave me which made me wake up with a " psychotic episode " (as

my

> husband lovingly calls it) which was really scary. Anyway, the next

> few months were spent recuperating & still not sleeping much...but

> again, I figured this is just what having a newborn is like, right?

So

> I did my best & figured it was just taking me longer than usual to

> bounce back because of all the blood I'd lost. To try to make the

rest

> of this long story short, I'll try to condense the rest...

>

> When my daughter Zoe was almost a year old, the onslaught of bizzare

> health problems began...one right after the other (or as the dr.'s

> like to call then, all the " non-specific " symptoms). Lump in

> throat...chest pain...palpitations...fatigue...numbness & tingling

in

> hands/arms/back...unexplained aches in my neck, arms, legs, hips,

> shoulder blades...carpal tunnel...brain fog & difficulty

> concentrating/remembering...stomach problems/IBS/abdominal

> pain...bizarre periods & breast tenderness... & the hair loss (that

> one's my favorite). 3 ER visits ( " there's nothing more we can do for

> you maam " )...switched PCP's twice...started regular chiropractor

> visits...x-rays, CT's, MRI's, bloodwork all " within normal limits "

> (how I hate those words). Always sent home to suffer & wonder. Then

> the anxiety set in...which is then blamed for all of the other

> problems. I'm sorry, but I wasn't like this before. Something's

> different...I can feel it. The anxiety didn't cause it...IT has

caused

> the anxiety. Had 2 gastroscopies in the last year...revealed GERD &

> sm. hiatal hernia. When abdominal pain increased I returned to the

> gastro. who not only didn't do any kind of physical exam but his

only

> suggestion was that " you need to be on Lexapro " (which, when I

> insisted upon asking him questions, he repeated to me at least 5

> times)...gee, thanks for your help. I finally got in to see a

> rheumatologist & she is the one who diagnosed me. Bloodwork there

> revealed a slightly elevated ANA but nothing else. Recently had an

> appoint. w/an endocrinologist who seemed very thorough but bloodwork

> there came back...drum roll please...within normal range! My problem

> has been determined by their office as " not endocrine related " , even

> though I have a TON of symptoms that point to some kind of hormonal

> imbalance. The only thing out of the ordinary in that bloodwork was

a

> slightly high Alkaline Phosphatase...which I wasn't even informed of

> by the endo. but by my chiro. who'd requested copies of my recent

> bloodwork. He said that it can mean a lot of different things but

> that it definitely shows I've been having some kind of muscular

pain.

> My newest development is this strange vibrating sensation through my

> arms & upper torso that comes & goes. It really has me baffled. It

> feels like a vibrating electrical current pulsing through me. I'd

LOVE

> to know if anyone else is experiencing this!!!

>

> My chiro. is great & does trigger point massage (which I highly

> recommend if you can stand it) & has me on some whole food

supplements

> which seem to have helped a little. I'm currently on Zyrtec-D,

> Prilosec, Xanax (as needed & to sleep) & a buttload (can I say

that?)

> of vitamins. I occasionally take hydrocodone if I'm having a bad

spot,

> which I've been having recently because of the cold weather. I do a

> lot of research on my own & have a lot of theories, but it's so easy

> to become overwhelmed by all that... & it doesn't help with the

anxiety

> either.

>

> My husband is wonderful & supportive, but at the same time, he just

> doesn't understand. He's never been sick much in his life & when I

> try to describe my aches & pains, I just know he doesn't get it.

I'm

> sure he gets tired of my complaining, even though he wouldn't say.

> He's always trying to get me to be positive... & I try, but again, he

> just doesn't understand just how hard that can be when you feel like

> you have the flu 24/7. He always thinks that I'm mad at him for

> something. I try to explain that I just don't feel well...but I'm

> afraid that it's putting a strain on our marriage. He works from

home

> for a health insurance company & I stay home & care for my

daughter. I

> don't have much of a support network because my parents are both

> deceased & I don't have much in the way of extended family. My

> husbands parents help out as much as they can but they live an hour

> away. They take Zoe for an overnight visit once a week to help me

out.

> We've lost touch with most of our friends because they moved & we

> moved & well, you know how that can happen. That's why I'm here. I'm

> just hoping for some connection with people that can truly

understand

> what this feels like, to want your " old self " back again, so badly.

I

> think so much about all the things I used to do. I used to work full

> time...have friends...go out, do things...had hobbies...the energy

to

> clean my house, go for walks & exercise. I know I don't have it as

bad

> as some others do & my heart goes out to all of you for whom this

> disease has become debilitating. I just miss feeling normal. I just

> want to feel 34 instead of feeling 74...

>

> OK, I'm done complaining. Sorry this was such a long introduction.

> I've been reading some of your posts already & you all seem so warm

&

> friendly. I'm really looking forward to hearing from some of you &

to

> being part of this group.

>

> Hopes for good days for all... ~Kandi

>

Hi Kandi It is nice to meet you My name is I live in Buffalo

and I really understend the lonliness you can feel when you have FM I

too have a wondreful husband but I know that all this takes a toll on

him and our relationship. Unless you have walked in the FM shoes it

is a hard to understand. You cannot see it so how can it be there.

But sweety you have come to the right place you will find alot of

love and support here, and all of us know how real this is. I look

foward to getting to now you better. I to am a mother. I have 3

girls. let me know how your are doing where you are from things like

that Take Care.......

[Guest guest]

>

> This is my 1st support group so I'm feeling a little shy & am not

> sure where to start with all this.

Hi Kandi,

Welcome, and I'm sorry you have to be here, but I've found it's a great

place to be. I was reading your post and said out loud, " me too " about

5 times!! I'm so sick of my husband whenever I mention my pain(which I

don't very often because of his response) he says, oh, I know what you

mean....NO you don't! I think he feels I'm mad at him too, well,

sometimes I am!!! Hang in there, we are all in this boat together.

/Mi