New member... need some help and info.

Posted May 16, 2002 · May 16, 2002

Hi everybody. Let me introduce myself; my name is nne and I've

been told that I have fibromyalgia. I had my appt. w/ a

rheumatologist today, and lets just say it didn't go so well.

My story, in as short as I can do it: 5 years ago... sudden horrible

pain in shoulders, clavical, back of neck area. NEVER went away.

Pain traveled to lower chest and upper arms. Saw Dr. 3 years into

it. Dr. sent to PT, after 3 months I quit, new baby and babysitter

was getting tired the schedule. PT did nothing for me so why go.

About the same time I saw an orthopedic who gave me coritzone shots

in my shoulder joints. This helped lessen the pain for a couple of

weeks, then I was right back where I started from. New baby 8 months

old... pregnant again. During this preg. at about 5 months my feet

kill me. Deal w/ it through the preg. After baby born, pain still

there, I go and get help when the baby is 5 months. I am diagnoised

w/ heel spurs. Get orthodics made for my shoes. Babies are now 2.5

and 14 months. Right after the 14 month old was born my pain started

changing and getting worse. My whole body hurt all over. As months

went on it got worse. My " tissues " hurt, as well as my " bones " . It

feels like my bones, but it's my understanding it's the tissues

around them... the " pressure points " ? Anyways... here are my

symptoms as of now:

Extremely painful areas.. hurt all the time...

-shoulders

-clavicals

-upper arms

-back of shoulders

-knees (they started about 9 months ago)

Painful areas when pressed on

-all of the above

-elbows

-feet

-any muscle tissue

-hips

Other things happening to me:

-at night I am so dang tired, but can't sleep that well for some

reason.

-I start sweating around 11:30 and do so until 5am or so, i am just

so warm.

-In the morning, I feel like I am 80 years old as I prepare myself to

get out of bed.

-I am exhausted all day. I hardly ever feel rested.

-can't lay on my back or I will have to get up to urinate again and

again and again. The urge to have to go.. never goes away for me..

and this makes it worse.

-I drop things all the time. I have definate muscle weakness. I

have no more glasses left. I've broken all of them over the years.

I use tupperware. I break glasses often enough it is a problem.

Last week in a 2 day span I dropped the milk jug twice and the apple

juice container. You can imagine the mess.. and w/ a 2.5 and 14

month old. I just cry and clean. I think I'm holding things, but

I'm not.

I have other symptoms but can't think of any more at the moment. Oh,

that's another one. I am a huge scatter brain. Don't know if it's

just cause I have two little ones of the fibro. Over the years I've

taken nsaids... didn't do anything... ibprofin... didn't do

anything.... haven't tried pain killers and won't .. too many addicts

in the genetics. Don't want to become one.

I am feeling very discouraged and upset. The Dr. today said this is

what I had and that I should diet and exercise. (I am also morbidly

obese.) There was " nothing he could do for me and wouldn't be seeing

me again. "

My family .. husband and parents seem oblivious to what I'm going

through. I've dealt w/ it for years and they just have NO CLUE what

I've been going through on a day to day basis. The pep talks I give

myself for the day.. the tears when I accidently bump into something

and jeer my body.. etc. It has been so hard... but I get hardly any

sympathy.

My mother said that when she was in her 30's... I just turned 30...

there was a time when her legs would hurt her at night and they

couldn't figure out why. She seems to think that's what I have too.

This is a lot more than that... but it's like they don't get it.. or

even want to.

Now that you've heard my symptoms and my frustrations, (thank you to

those who have read this far), hear are my questions.

1. Does this sound like fibromyalgia or just some ache that isn't

that bad like my mother insinuated.

2. The dr. didn't even look for the pressure points I've read about

or anything. His attitude stunk and he wasn't helpful to say the

least. Can someone give me a name and a number to someone close by

me? I live near Modesto, Ca. in the central valley. I can easily

travel to see someone in the Sacramento, Fresno, or Bay Area

regions.

Thank you for reading this, those of you who have. I could really

use some support and information. nne

Posted May 16, 2002 · May 16, 2002

Hi nne,

Welcome to the group. I'm new here too.

My first bit of advice is - find another doctor!!! I can't tell you how

many doctors I've seen who passed off my pain, telling me it was all in

my head, telling me I was a hypochondriac (yes, that really happened)

and telling me I didn't have fibromyalgia (after 5 doctors already

diagnosed me as such) and said it was my weight.

Keep trying doctors until you find someone who understands. See if

there is a Fibro support group in your area. If you check with the

Arthritis foundation, they might be able to help find a group.

Have you seen a neurologist? The problems with your hands - and

dropping stuff doesn't sound like fibro and should be investigated

throughly. Its not " nothing " . You need to find someone who can help.

I live in the Chicago area - fortunately, I've found a support group and

they referred me to a rheumatologist who deals with Fibro. He knows I

have pain, he has prescribed several medications, but each one i try, I

need to stop taking because I am unable to tolerate them due to side

effects. The last one was Neurotin - but it made me like a zombie and I

was having blurred vision with it. I've yet to call him again to try

yet another, but I will. Its very discouraging though.

I was fortunate that I was older (44) when i was diagnosed and my kids

were older. They have since moved out and I'm on my own (divorced when

the kids were 2 1/2 and 4 months old) If I don't feel up to doing

anything, like cooking or cleaning... I don't. I had a day like that

today. I was in so much pain, all I could do was lay on the sofa

watching TV.

Good luck. You have your hands full with the kids, but you need to take

care of yourself too. Keep looking for that doctor that will treat you

like a human.

Koala-t hugs,

Cathy

Posted May 17, 2002 · May 17, 2002

Hi nne. I read your story and my gosh how I identify! Aside

from a few things, your story sounds like mine. Feeling 80, the

babies, the pain, the fatigue...I do drop things frequently too.

This brain fog thing....I started experiencing it three years ago

when I was in nursing school. I couldn't figure out why the heck I

was having such trouble remembering and concentrating on simple and

relatively easy stuff. That was two years before I was diagnosed.

The pain and fatigue came on way before that. I just feel spacy.

Like when I count back money to someone, I look at the pennies,

quarters dimes and nickles, but when I go to count it back...it takes

me a moment to think ..ok 25 cents and 10 cents equals 35....stuff

like that.

> Hi everybody. Let me introduce myself; my name is nne and

I've

> been told that I have fibromyalgia. I had my appt. w/ a

> rheumatologist today, and lets just say it didn't go so well.

>

> My story, in as short as I can do it: 5 years ago... sudden

horrible

> pain in shoulders, clavical, back of neck area. NEVER went away.

> Pain traveled to lower chest and upper arms. Saw Dr. 3 years into

> it. Dr. sent to PT, after 3 months I quit, new baby and babysitter

> was getting tired the schedule. PT did nothing for me so why go.

> About the same time I saw an orthopedic who gave me coritzone shots

> in my shoulder joints. This helped lessen the pain for a couple of

> weeks, then I was right back where I started from. New baby 8

months

> old... pregnant again. During this preg. at about 5 months my feet

> kill me. Deal w/ it through the preg. After baby born, pain still

> there, I go and get help when the baby is 5 months. I am

diagnoised

> w/ heel spurs. Get orthodics made for my shoes. Babies are now

2.5

> and 14 months. Right after the 14 month old was born my pain

started

> changing and getting worse. My whole body hurt all over. As

months

> went on it got worse. My " tissues " hurt, as well as my " bones " .

It

> feels like my bones, but it's my understanding it's the tissues

> around them... the " pressure points " ? Anyways... here are my

> symptoms as of now:

>

> Extremely painful areas.. hurt all the time...

> -shoulders

> -clavicals

> -upper arms

> -back of shoulders

> -knees (they started about 9 months ago)

>

> Painful areas when pressed on

> -all of the above

> -elbows

> -feet

> -any muscle tissue

> -hips

>

> Other things happening to me:

> -at night I am so dang tired, but can't sleep that well for some

> reason.

> -I start sweating around 11:30 and do so until 5am or so, i am just

> so warm.

> -In the morning, I feel like I am 80 years old as I prepare myself

to

> get out of bed.

> -I am exhausted all day. I hardly ever feel rested.

> -can't lay on my back or I will have to get up to urinate again and

> again and again. The urge to have to go.. never goes away for me..

> and this makes it worse.

> -I drop things all the time. I have definate muscle weakness. I

> have no more glasses left. I've broken all of them over the

years.

> I use tupperware. I break glasses often enough it is a problem.

> Last week in a 2 day span I dropped the milk jug twice and the

apple

> juice container. You can imagine the mess.. and w/ a 2.5 and 14

> month old. I just cry and clean. I think I'm holding things, but

> I'm not.

>

> I have other symptoms but can't think of any more at the moment.

Oh,

> that's another one. I am a huge scatter brain. Don't know if it's

> just cause I have two little ones of the fibro. Over the years

I've

> taken nsaids... didn't do anything... ibprofin... didn't do

> anything.... haven't tried pain killers and won't .. too many

addicts

> in the genetics. Don't want to become one.

>

> I am feeling very discouraged and upset. The Dr. today said this

is

> what I had and that I should diet and exercise. (I am also

morbidly

> obese.) There was " nothing he could do for me and wouldn't be

seeing

> me again. "

>

> My family .. husband and parents seem oblivious to what I'm going

> through. I've dealt w/ it for years and they just have NO CLUE

what

> I've been going through on a day to day basis. The pep talks I

give

> myself for the day.. the tears when I accidently bump into

something

> and jeer my body.. etc. It has been so hard... but I get hardly

any

> sympathy.

>

> My mother said that when she was in her 30's... I just turned 30...

> there was a time when her legs would hurt her at night and they

> couldn't figure out why. She seems to think that's what I have

too.

> This is a lot more than that... but it's like they don't get it..

or

> even want to.

>

> Now that you've heard my symptoms and my frustrations, (thank you

to

> those who have read this far), hear are my questions.

>

> 1. Does this sound like fibromyalgia or just some ache that isn't

> that bad like my mother insinuated.

>

> 2. The dr. didn't even look for the pressure points I've read

about

> or anything. His attitude stunk and he wasn't helpful to say the

> least. Can someone give me a name and a number to someone close

by

> me? I live near Modesto, Ca. in the central valley. I can easily

> travel to see someone in the Sacramento, Fresno, or Bay Area

> regions.

>

> Thank you for reading this, those of you who have. I could really

> use some support and information. nne

Posted May 17, 2002 · May 17, 2002