new to the group

[Guest guest]

Angel-

What would it hurt to have her evaluated? It is painless and fun (i.e.,

playbased) for kids and does not take much time. It is imperative for

your daughter to get help early if there is a problem. And if there

isn't, then your mind will be at ease. Really, there is nothing to lose

by getting an evaluation. Having been through it myself, I know that it

is hard. I hope that helps!

_____________________

Warmly,

Oakes-Hauf

Mom to , 3.7 (verbal apraxia)

and 1.5 (and talking away!)

Mike and Angel wrote:

>

> hi all im angel and im 24. Im married to a marine adn have 2 beautiful

> babies....Olivia who is 14 months and who is 2 months. Olivias

> doctors are telling us she is behind in talking since she usually says

> da da da da da da and doesnt point to body parts or to what she wants.

> they want to access her and see if she is a late bloomer or if

> something is wrong....I on the other hand feel she is just waiting

> until she is good and ready to talk regardless of these docs....They

> are civilian docs who are telling me this and I have had some crummy

> experiences with civilian docs on military bases....what is you alls

> in put on this? I feel so torn. I feel like the docs are forceing me

> to have her accessed when I dont feel we need it right at this point

> in time.....please help thanks

>

>

[Guest guest]

Angel,

Another good point in favor of going through your state's early

intervention (EI) services is that your daughter can be evaluated by

someone other than these doctors who you don't seem comfortable

with. Now to be honest, people have reported mixed experiences with

EI, but for me personally, it has been fantastic. My son's

therapists are WONDERFUL and have helped him (and me) so much.

They've become friends of the family, really, and it is so nice to

have people in your life who can understand and support you through

this. They are also the ones to encourage me and telling me I'm

doing a good job--no small nicety when well meaning friends and

relatives often imply I'm doing everything all wrong. In short, you

just never know who will be the person who helps you and your child

along, so I would definitely give it a try. Your daughter is very

young and you are right to have faith in her prognosis but good

therapy will only help her reach her potential all the quicker.

Kristi

[Guest guest]

Angel,

Another good point in favor of going through your state's early

intervention (EI) services is that your daughter can be evaluated by

someone other than these doctors who you don't seem comfortable

with. Now to be honest, people have reported mixed experiences with

EI, but for me personally, it has been fantastic. My son's

therapists are WONDERFUL and have helped him (and me) so much.

They've become friends of the family, really, and it is so nice to

have people in your life who can understand and support you through

this. They are also the ones to encourage me and telling me I'm

doing a good job--no small nicety when well meaning friends and

relatives often imply I'm doing everything all wrong. In short, you

just never know who will be the person who helps you and your child

along, so I would definitely give it a try. Your daughter is very

young and you are right to have faith in her prognosis but good

therapy will only help her reach her potential all the quicker.

Kristi

[Guest guest]

Hi Jenn, Is Zach receiving speech therapy through the school or privately? He

sounds just like my grandson Damon who is almost 4 and has been in theraphy

since before he was 2. Damon is making good progress, but it is slow and often

very frustrating, Sometimes his inability to articulate makes no sense to me at

all.....I think that if he can every figure out how to use the " C, K, and R "

sounds, he will be so much better. He goes to special pre school twice a week

and sees a clinical speech pathologist once a week....that's what the insurance

will allow. Keep the faith and give him lots of attention and love......Fay,

Damon's grandmother

[ ] New to the group

Hi everyone,

My name is and I am not even sure this is the place I belong!

I have a son, Zachary - he's just a bit over 3 he has been involved in

early intervention since he was 1 1/2 and then we moved to child find

after he turned 3.

He has not been diagnosed with anything, however he's very hard to

understand - he has started talking, which is a WONDERFUL in and of

itself - his teacher was here yesterday and she reported, which I

agree that Zachary is only understood around 10% of the time - unless

you look at the context of what's going on and even then only is

understood around 60-70% of the time. Though I understand a bit more

its not much!

I am not sure where to go or who to turn to - Zachary is such a bright

boy other than the talking, and it frustrates both of us to no end!

Anyway, just wanted to say HI!

Jenn

[Guest guest]

Hi and welcome Zoni! I'm julie, 28 yr old mom of 2 young kids...Honey i know

how you feel. Its tough when all you want or can do is lay in bed or on the

couch as much as possible...Been there done that. HUGS This is an awesome

group glad you found it!

In PA

************************************** See what's free at http://www.aol.com.

[Guest guest]

I wish I could do a walk like that but my feet just kill me.

I need to lose a lot of weight too Zoni. I have gained a lot since

starting prednisone a few years ago and breaking my foot twice.

I have it really bad in my feet and ankles. Tried water aerobics and I hated

it. LMK if you inquire about the band surgery.

Good luck!

Joy

Zoni <zoni@...> wrote:

Hi, my name is Zoni. I live in Tn. and have three small children. I

was

diagnosed with JRA when I was 12 and am now 29. I have tried many, many

different medications and therapies. I am currently doing Remecade IV

treatments. They are working okay.

They are now saying I probably have Fibro too.

Sometimes I feel like it is really hard to be a good mom when some days I

can barely move. I am always so tired and depressed.

I have my next IV in may and am planning to talk to my Rheumatologist about

stomach banding. I think that if I could get weight off I would feel so much

better. ( I am 100 lbs. over)

I am signed up to do the arthritis walk next month and it will be my third

year. Anyone else here do it?

I am glad to have found this group.

Zoni

[Guest guest]

Welcome Rose what a beautiful name. I am sorry you have been having such a

hard time, I am glad you are near your family, I do not know what I would do

without my husband.

You will love the people here, we all understand what it is like to have this

chronic illness.

Marsha

[ ] New to the group

Hi everyone - I am new to the group. I've been dealing with RA,

Fibromyalgia and CFS for about 5 years now - as far as having it

officially diagnosed by a doctor - but I believe I've dealt with it

much longer than that.

I moved last year from Texas to Indiana - to be nearer my kids because

I had a bad spell that kept me from working and after some very bad

times, I decided I needed to be near those who could help me if such a

flare up happened again.... I can hope that one day it will not

happen, can't I?

Well, the big bad monster is back and I've had a very rough few weeks

with pain, inflamation and just getting out of bed has been hard. I

am NOT working, so that leaves me with no insurance and no medication

- but I have been getting a little relief with an alternative

medication my daughter discovred at the health food store..

Oh and by the way, my name is Rose -

I am happy to find ya'll -

[Guest guest]

-Hey Zoni, I am new to the group as well. Wow three kids I really

admire you! I have two kids and they were almost too much for me. I

was diagnosed with " arthritis " when I was young too and treated with

prednisone etc... but never told I had Rheumatoid until 1999 when I

ended up in the ER unable to stand up. I was thin my whole life

until I started taking MTX and TNF's now I am overweight too so I

know how that feels. I am not active enough to lose weight I really

don't eat that much. So along with our life being taken away we

have to be fat too heehee Well it's nice to meet you good luck,

Michele

-- In , " Zoni " <zoni@...> wrote:

>

> Hi, my name is Zoni. I live in Tn. and have three small children. I

was

> diagnosed with JRA when I was 12 and am now 29. I have tried many,

many

> different medications and therapies. I am currently doing Remecade

IV

> treatments. They are working okay.

>

> They are now saying I probably have Fibro too.

>

> Sometimes I feel like it is really hard to be a good mom when some

days I

> can barely move. I am always so tired and depressed.

>

> I have my next IV in may and am planning to talk to my

Rheumatologist about

> stomach banding. I think that if I could get weight off I would

feel so much

> better. ( I am 100 lbs. over)

>

> I am signed up to do the arthritis walk next month and it will be

my third

> year. Anyone else here do it?

>

> I am glad to have found this group.

>

> Zoni

>

>

>

>

[Guest guest]

Hi Zoni,

welcome to the group. Sadly many of us develop FM on top of arthritis. It

doesn't seem fair does it. I think with the fibro you will have to learn to pace

yourself, don't do too much on good days. fibro is so different to arthritis, it

seems to effect you for days after you have done too much. Have you tried

Hydrotherapy? I have found this quite good. I went for 8 sessions with a physio

then found a warm pool, it really must be warm. We go at least once a week,

hopefully twice. I do my exercises, have a little swim then just relax. At my

pool we also have a spa pool this is just extra luxury and the jets seem to

help. Perhaps this is something you could do with the children. Hope this all

helps.

Sue

[ ] new to the group

Hi, my name is Zoni. I live in Tn. and have three small children. I was

diagnosed with JRA when I was 12 and am now 29. I have tried many, many

different medications and therapies. I am currently doing Remecade IV

treatments. They are working okay.

They are now saying I probably have Fibro too.

Sometimes I feel like it is really hard to be a good mom when some days I

can barely move. I am always so tired and depressed.

I have my next IV in may and am planning to talk to my Rheumatologist about

stomach banding. I think that if I could get weight off I would feel so much

better. ( I am 100 lbs. over)

I am signed up to do the arthritis walk next month and it will be my third

year. Anyone else here do it?

I am glad to have found this group.

Zoni

[Guest guest]

Hi Rose,

Welcome to the group. Sorry to hear you've had such a bad time of it. It seems

many of us develop FM on top of arthritis. I have just come through a bad flare

up, and am waiting to see the rheumi, why is it that you never seem to get an

appointment when in a bad flare! by the time you see them you just explain how

bad the pain was.

I hope you are feeling a little better today.

As I said i previous mails, have you tried Hydrotherapy, I have found it very

good and relaxing, but you must have a warm pool. You need to see a physio first

to teach you the exercises.

Hope this helps.

Sue

[ ] New to the group

Hi everyone - I am new to the group. I've been dealing with RA,

Fibromyalgia and CFS for about 5 years now - as far as having it

officially diagnosed by a doctor - but I believe I've dealt with it

much longer than that.

I moved last year from Texas to Indiana - to be nearer my kids because

I had a bad spell that kept me from working and after some very bad

times, I decided I needed to be near those who could help me if such a

flare up happened again.... I can hope that one day it will not

happen, can't I?

Well, the big bad monster is back and I've had a very rough few weeks

with pain, inflamation and just getting out of bed has been hard. I

am NOT working, so that leaves me with no insurance and no medication

- but I have been getting a little relief with an alternative

medication my daughter discovred at the health food store..

Oh and by the way, my name is Rose -

I am happy to find ya'll -

[Guest guest]

Hi Michele,

Welcome to the group, hope by talking to other people with the same illness it

helps you.

Hope you are not feeling too bad today.

Sue

[ ] Re: new to the group

-Hey Zoni, I am new to the group as well. Wow three kids I really

admire you! I have two kids and they were almost too much for me. I

was diagnosed with " arthritis " when I was young too and treated with

prednisone etc... but never told I had Rheumatoid until 1999 when I

ended up in the ER unable to stand up. I was thin my whole life

until I started taking MTX and TNF's now I am overweight too so I

know how that feels. I am not active enough to lose weight I really

don't eat that much. So along with our life being taken away we

have to be fat too heehee Well it's nice to meet you good luck,

Michele

-- In , " Zoni " <zoni@...> wrote:

>

> Hi, my name is Zoni. I live in Tn. and have three small children. I

was

> diagnosed with JRA when I was 12 and am now 29. I have tried many,

many

> different medications and therapies. I am currently doing Remecade

IV

> treatments. They are working okay.

>

> They are now saying I probably have Fibro too.

>

> Sometimes I feel like it is really hard to be a good mom when some

days I

> can barely move. I am always so tired and depressed.

>

> I have my next IV in may and am planning to talk to my

Rheumatologist about

> stomach banding. I think that if I could get weight off I would

feel so much

> better. ( I am 100 lbs. over)

>

> I am signed up to do the arthritis walk next month and it will be

my third

> year. Anyone else here do it?

>

> I am glad to have found this group.

>

> Zoni

>

>

>

>

[Guest guest]

Hi and Welcome . I'm new here too. I've only been on here a few days,

but I think this is a pretty great group of people. How is your regimen

working for you? I'm on Imuran, QVAR, Baclofen, Prednisone, and Lortabs (for

SLE,

OA, PA and FM).

I don't often get too much swelling, except for edema, but I do get a lot of

pain. Right now, most of my pain is in my spine and down my legs. I still

have plenty in my hands, shoulders and left knee, but my spine (cervical &

lumbar) is my biggest problem.

I have to " warm up " in bed, before I can even get out, otherwise, I won't be

able to manage to steps to the bathroom. Just some minor rehab type

exercises and mild stretching, but they really help. It takes me a long time

get

functional too, so I get up extra early. If I have an appointment at 8 AM, then

I'm up at 5:30 AM. That gives me 2 hours to get ready and 1/2 and hour to get

to the appointment. I need the extra time because I am moving that slowly in

the morning! LOL!

Carol

In a message dated 4/15/2007 8:32:49 P.M. Pacific Daylight Time,

javierucla@... writes:

Hello everyone my name is , I'm 43 and live Paramount CA.I was

diagnosed with RA in October 2006 but I have been dealing with the

pain for about a year prior. The pain started in my hands,fingers,and

wrists but now I have joint pain and swelling in my

feet,ankles,knees,elbows,and even the back of my neck. My right elbow

is so swollen I can't even straighten out my arm and my neck is so

stiff most of the times that I can't turn my head left or right. I

believe that the reality of this disease and the fact that I'll never

be the same man again is just starting to sink in,it's bad enough

dealing with the pain but now the depression is setting in....I can't

win. I'm on methotrexate alternating pills one week and an injection

the next week,prednisone 1 tablet a day,folic acid 1 tablet a day,and

motrin 3 times a day. The mornings are the worst,I'm up at 4:00am to

be at work at 5:00am and it takes me almost until noon to function

properly. I hope to learn alot from this group and I welcome any and

all words of wisdom,advice, and support.....thank you

************************************** See what's free at http://www.aol.com.

[Guest guest]

Welcome to the group, . RA is a terrible disease to get. I know,

because I also have it. It takes a while to get it under control. If

your present regimen does not do the trick, hopefully your doctor will

try additional meds. I hope that you are going to a rheumatologist,

because they are best equipped to monitor drugs used for RA. My RA is

under great control now with Enbrel, so know that there is hope for

you. Insurance companies will not usually let them start you out on the

biologics like Enbrel and Humira, because they are terribly expensive.

Methotrexate is helping many people, so hopefully it will be enough;

but if not, your rheumy will add something else.

Constant pain can certainly lead to depression. Just try to hang in

there until your doctor finds the right treatment for you. You can

always vent here whenever you wish; we will understand.

Sue

On Sunday, April 15, 2007, at 11:26 PM, Ornelas wrote:

> Hello everyone my name is , I'm 43 and live Paramount CA.I was

> diagnosed with RA in October 2006 but I have been dealing with the

> pain for about a year prior.

[Guest guest]

Hi ,

My name is Marsha, I am 48 and live in St. Louis, Missouri. I was dx's in

September I know what you mean, I use to run 30 miles a week, I use to love

lifting weights and a week ago I had to use a cane due to swelling in my knee.

I was like you very upset having to use the cane and even with the cane I was

so exhausted a couple of times I wanted to use a wheel chair which blew me away

from what I use to be to now. I was very depressed and negative, but the people

on this group were here for me and let me know that I can't look back and to go

forward. It was hard I use to define myself by what I did and I could do

anything I put my mind to. I was in control, that was and is the biggest issue

for me, I do not have control of my body it pretty much tells me what I will be

able to do for that day. I was very controlled as a child and I promised myself

never would anyone or thing control me, well here I am, but I am trying to work

with this chronic illness (one word that knocked me on my butt when the doctor

told me I had a chronic illness, I would not get better I would be living with

this for the rest of my life!) finding when I can push and when I can not.

I ride horses for a living and so far that is doable my knee wasn't as bad

riding as walking, but this weekend my left hand started aching so I was icing

it. I am actually thinking ahead for modifications to my reins so I can still

ride. So now I am trying to find ways to work with it.

I felt I went through degrees with this, at first I thought no big deal I am a

fighter then my first big flare and the cane realized I couldn't fight against

myself.

There are several medications for this illness and you have to go through one

at a time till you find the one that works for you. I know how hard it is to

get going in the mornings, what kind of work do you do?

We all have been where you are and know how frustrating it can be please feel

free to vent here anytime we all are here for each other.

Welcome to the Group!!!

Marsha

[ ] new to the group

Hello everyone my name is , I'm 43 and live Paramount CA.I was

diagnosed with RA in October 2006 but I have been dealing with the

pain for about a year prior. The pain started in my hands,fingers, and

wrists but now I have joint pain and swelling in my

feet,ankles, knees,elbows, and even the back of my neck. My right elbow

is so swollen I can't even straighten out my arm and my neck is so

stiff most of the times that I can't turn my head left or right. I

believe that the reality of this disease and the fact that I'll never

be the same man again is just starting to sink in,it's bad enough

dealing with the pain but now the depression is setting in....I can't

win. I'm on methotrexate alternating pills one week and an injection

the next week,prednisone 1 tablet a day,folic acid 1 tablet a day,and

motrin 3 times a day. The mornings are the worst,I'm up at 4:00am to

be at work at 5:00am and it takes me almost until noon to function

properly. I hope to learn alot from this group and I welcome any and

all words of wisdom,advice, and support..... thank you

[Guest guest]

Hi Roselyn,

Yeah doctors can be a real pain. The lab may not show but that doesn't mean

you do not have RA, my labs were neg. at the time a year before my antibodies

were very high I was dx's with Hashimoto's disease (another autoimmune disease).

Can your sister get you the meds you need or find a better doctor?

Oh and Welcome this group will help you alot.

Marsha

[ ] New to the Group

Hi! I have not been diagnosed with RA yet (except by my sister -

who's not an MD but has a lot of experience - her own & both her

daughters... ) but am waiting for some sort of diagnosis from my

internist. I just had what MAY be a " flare up " according to my sis -

low grade fever for 2 weeks +, joint pain, bad headache, no other

symptoms. My dr gave me a Medrol dose-pack prescription which helped,

but the fever & pain came back when it was finished. Had blood drawn

2 weeks ago for the standard RA tests, went back yesterday to get the

results and there was a problem with the lab so I still don't know

anything.

I feel somewhat better now but am frustrated with the lack of

professionalism in my doctor's office. Getting ready to change!

I appreciate any advice or sympathy or whatever this group can give!

Also may need a good rheumatologist in Central Louisiana.

Thanks,

Roselyn

[Guest guest]

Welcome Sissy, You could be me except I'm 48 and I had 3 level spinal

fusion. Worse now than before surgery. Sorry we all have to meet this way

but you have a LOT of support here. Vent anytime. Soft hugs and Prayers,

Deta aka Fayray

>From: " Sissy " <sissygsapir@...>

>Reply-

>

>Subject: [ ] New to the group

>Date: Wed, 20 Jun 2007 21:26:14 -0000

>

>Hi everyone,

>My name is Sissy. I am 39 years old and have recently been diagnosed

>with fibromyalgia! I was diagnosed with degenerative disc disease in

>my back over eight years ago. Two and a half years ago, I had to stop

>my work in the healthcare field. I've suffered much with herniations,

>bulges, bone spurs, etc. I have 3 levels so there is nothing that can

>be done.

>Off and on, many other things started happening. I've been to every

>specialist I can think of.

>I was diagnosed with Hashimoto's disease (thyroid disease),

>osteomalacia (softening of the bones), onset of prediabetes, and now

>fibromyalgia. I'm on 22 prescription meds/day including two types of

>morphine for my back...an immediate release and a long acting one to

>help thru the night.

>I have extreme stomach problems when I get a flare up...starts with

>vomiting followed by extreme bouts of diarrhea....is this normal??? I

>know IBS is one of the symptoms, and I have restless legs as well

>which I did not know was a symptom. The pain feels like the

>flu...every joint and muscle in my body aches, my hair even

>hurts....many days I brush my teeth and bathe, but leave my hair

>alone. The fatigue I thought was a result of alot of the meds I am

>on. I sleep so much it seems and never get out unless I have a

>doctor's appt. Occasionally, I will go to see my daughter play

>sports, but then feel my husband has to tote everything.

>I was so athletic growing up, and fortunately still have much muscle

>mass left. I was highly intelligent and was quite successful.

>I feel now as if the rug has been pulled out from under me. I have

>lost my job that I dearly loved, my friends who are young and busy

>with being a parent, working, etc. rarely have time to visit.

>I feel as if I have been forgotten, and that all the world is living

>but me. People in the family will talk about where they went, what

>they did, etc. I never have anything new to add. I feel as if people

>think I'm just " playing " sick for sympathy or attention. Believe me,

>being alone as much as I am isn't " attention " . I live with my husband

>and two children. They totally ignore the fact that stress makes

>things worse even after I have told them. They interrupt my naps, not

>understanding I never get a full-night's sleep.

>It's difficult, b/c to the world...I do not look sick!!! If I do my

>hair and makeup...I look very normal. It takes me so long to go

>anywhere. I easily have sweat pop out on my face and neck b/c of the

>pain. To top it all off, I'm trying to get disability. I couldn't

>begin to estimate how many med charts I have had since this all began

>with my back. So now, money is an issue as well...for me! I've

>exhausted my resources!

>I know with the disc disease, it's very easy to see how the discs

>have deterioated, and you can see the disc fragments, bones spurs,

>vertbrae fracture, etc. With the other diseases and problems...you

>can see a labwork elevation or decrease. However, with

>fibromyalgia...there isn't an x-ray or lab test to prove it.

>My doctor pressed several areas in my body....some were so sore-it

>felt like i had been in a bad car accident. She noted that i have

>bursitis in both hips...another injection. if i could get paid for

>the amount ot times i have been stuck with a needle, i'd be doing

>really well, i feel.

>

>Thanks so anyone for reading my story. i am depressed, mainly b/c of

>lack of support. and everyday i cannot escape it. my endocrinologist

>just called and is increasing two meds and starting another. i broke

>down and cried!!! i am so sick of these meds....i just want to throw

>them all away.

>don't think i haven't thought on days when i couldn't even lay down

>in bed b/c the pain was too much -- anything touching my skin, my

>muscles, etc.

>

>too many nights of sitting up and just bawling b/c of the pain. sure,

>you think...cancer patients have an end in sight usually, but i

>cannot imagine what they go thru mentally.

>my memory these days is very shady, and honestly for someone so

>intelligent it is quite upsetting to not be able to remember. you

>know, i don't want to be labeled, at the same time I want something

>done as far as research to help " US " who are living and hurting and

>will continue to live. it breaks my heart when ppl look for options

>out...i will admit there are times when the pain consumes everything

>including rationality.

>Thanks for reading my bio, I look forward to getting to know each of

>you! Sissy

>

_________________________________________________________________

Don’t miss your chance to WIN $10,000 and other great prizes from Microsoft

Office Live http://clk.atdmt.com/MRT/go/aub0540003042mrt/direct/01/

[Guest guest]

I had my fibromyalgia treated by this guy very successfully:

www.fibromyalgiatreatment.com

I went from bed to in 5 months hiking all over the great wall of China! Good

luck,

Sissy <sissygsapir@...> wrote:

Hi everyone,

My name is Sissy. I am 39 years old and have recently been diagnosed

with fibromyalgia! I was diagnosed with degenerative disc disease in

my back over eight years ago. Two and a half years ago, I had to stop

my work in the healthcare field. I've suffered much with herniations,

bulges, bone spurs, etc. I have 3 levels so there is nothing that can

be done.

Off and on, many other things started happening. I've been to every

specialist I can think of.

I was diagnosed with Hashimoto's disease (thyroid disease),

osteomalacia (softening of the bones), onset of prediabetes, and now

fibromyalgia. I'm on 22 prescription meds/day including two types of

morphine for my back...an immediate release and a long acting one to

help thru the night.

I have extreme stomach problems when I get a flare up...starts with

vomiting followed by extreme bouts of diarrhea....is this normal??? I

know IBS is one of the symptoms, and I have restless legs as well

which I did not know was a symptom. The pain feels like the

flu...every joint and muscle in my body aches, my hair even

hurts....many days I brush my teeth and bathe, but leave my hair

alone. The fatigue I thought was a result of alot of the meds I am

on. I sleep so much it seems and never get out unless I have a

doctor's appt. Occasionally, I will go to see my daughter play

sports, but then feel my husband has to tote everything.

I was so athletic growing up, and fortunately still have much muscle

mass left. I was highly intelligent and was quite successful.

I feel now as if the rug has been pulled out from under me. I have

lost my job that I dearly loved, my friends who are young and busy

with being a parent, working, etc. rarely have time to visit.

I feel as if I have been forgotten, and that all the world is living

but me. People in the family will talk about where they went, what

they did, etc. I never have anything new to add. I feel as if people

think I'm just " playing " sick for sympathy or attention. Believe me,

being alone as much as I am isn't " attention " . I live with my husband

and two children. They totally ignore the fact that stress makes

things worse even after I have told them. They interrupt my naps, not

understanding I never get a full-night's sleep.

It's difficult, b/c to the world...I do not look sick!!! If I do my

hair and makeup...I look very normal. It takes me so long to go

anywhere. I easily have sweat pop out on my face and neck b/c of the

pain. To top it all off, I'm trying to get disability. I couldn't

begin to estimate how many med charts I have had since this all began

with my back. So now, money is an issue as well...for me! I've

exhausted my resources!

I know with the disc disease, it's very easy to see how the discs

have deterioated, and you can see the disc fragments, bones spurs,

vertbrae fracture, etc. With the other diseases and problems...you

can see a labwork elevation or decrease. However, with

fibromyalgia...there isn't an x-ray or lab test to prove it.

My doctor pressed several areas in my body....some were so sore-it

felt like i had been in a bad car accident. She noted that i have

bursitis in both hips...another injection. if i could get paid for

the amount ot times i have been stuck with a needle, i'd be doing

really well, i feel.

Thanks so anyone for reading my story. i am depressed, mainly b/c of

lack of support. and everyday i cannot escape it. my endocrinologist

just called and is increasing two meds and starting another. i broke

down and cried!!! i am so sick of these meds....i just want to throw

them all away.

don't think i haven't thought on days when i couldn't even lay down

in bed b/c the pain was too much -- anything touching my skin, my

muscles, etc.

too many nights of sitting up and just bawling b/c of the pain. sure,

you think...cancer patients have an end in sight usually, but i

cannot imagine what they go thru mentally.

my memory these days is very shady, and honestly for someone so

intelligent it is quite upsetting to not be able to remember. you

know, i don't want to be labeled, at the same time I want something

done as far as research to help " US " who are living and hurting and

will continue to live. it breaks my heart when ppl look for options

out...i will admit there are times when the pain consumes everything

including rationality.

Thanks for reading my bio, I look forward to getting to know each of

you! Sissy

[Guest guest]

Fayray,

such a cute name. i appreciate you so much for your support. my 10 yr old

daughter is the one beside me as i'm laying here in so much pain. she was trying

to comfort me as i lay here crying and i had to ask her not to rub my arm, to

allow me to touch her instead.

i'm such an affectionate person, so this has been such a tough battle.

i'm so sorry to hear abt your surgery. my levels are l3-l4, l4-l5, and l5-s1.

because of my age, they wouldn't allow the surgery. i do have a spinal

stimulator with two leads into my spine. it helps with the major back pain, but

it's still a bandaid!

i feel so welcomed, and feel relieved that i can vent. my husband just doesn't

get it when i tell him to just go and leave me alone. i feel we will end up

splitting...i don't care at this point. if he can't invest the time to join a

group or educate himself...then he can't help me and the love isn't there

anymore.

i'm the type that loves ppl and can nurture...it's just not him!!!

i again feel blessed to meet you. pls keep in touch so i can learn who everyone

is!!!

my memory stinks these days!!! so pls add me to your address book, and i will do

the same! God bless you and have a restful evening!

Sissy

[ ] New to the group

>Date: Wed, 20 Jun 2007 21:26:14 -0000

>

>Hi everyone,

>My name is Sissy. I am 39 years old and have recently been diagnosed

>with fibromyalgia! I was diagnosed with degenerative disc disease in

>my back over eight years ago. Two and a half years ago, I had to stop

>my work in the healthcare field. I've suffered much with herniations,

>bulges, bone spurs, etc. I have 3 levels so there is nothing that can

>be done.

>Off and on, many other things started happening. I've been to every

>specialist I can think of.

>I was diagnosed with Hashimoto's disease (thyroid disease),

>osteomalacia (softening of the bones), onset of prediabetes, and now

>fibromyalgia. I'm on 22 prescription meds/day including two types of

>morphine for my back...an immediate release and a long acting one to

>help thru the night.

>I have extreme stomach problems when I get a flare up...starts with

>vomiting followed by extreme bouts of diarrhea....is this normal??? I

>know IBS is one of the symptoms, and I have restless legs as well

>which I did not know was a symptom. The pain feels like the

>flu...every joint and muscle in my body aches, my hair even

>hurts....many days I brush my teeth and bathe, but leave my hair

>alone. The fatigue I thought was a result of alot of the meds I am

>on. I sleep so much it seems and never get out unless I have a

>doctor's appt. Occasionally, I will go to see my daughter play

>sports, but then feel my husband has to tote everything.

>I was so athletic growing up, and fortunately still have much muscle

>mass left. I was highly intelligent and was quite successful.

>I feel now as if the rug has been pulled out from under me. I have

>lost my job that I dearly loved, my friends who are young and busy

>with being a parent, working, etc. rarely have time to visit.

>I feel as if I have been forgotten, and that all the world is living

>but me. People in the family will talk about where they went, what

>they did, etc. I never have anything new to add. I feel as if people

>think I'm just " playing " sick for sympathy or attention. Believe me,

>being alone as much as I am isn't " attention " . I live with my husband

>and two children. They totally ignore the fact that stress makes

>things worse even after I have told them. They interrupt my naps, not

>understanding I never get a full-night's sleep.

>It's difficult, b/c to the world...I do not look sick!!! If I do my

>hair and makeup...I look very normal. It takes me so long to go

>anywhere. I easily have sweat pop out on my face and neck b/c of the

>pain. To top it all off, I'm trying to get disability. I couldn't

>begin to estimate how many med charts I have had since this all began

>with my back. So now, money is an issue as well...for me! I've

>exhausted my resources!

>I know with the disc disease, it's very easy to see how the discs

>have deterioated, and you can see the disc fragments, bones spurs,

>vertbrae fracture, etc. With the other diseases and problems...you

>can see a labwork elevation or decrease. However, with

>fibromyalgia...there isn't an x-ray or lab test to prove it.

>My doctor pressed several areas in my body....some were so sore-it

>felt like i had been in a bad car accident. She noted that i have

>bursitis in both hips...another injection. if i could get paid for

>the amount ot times i have been stuck with a needle, i'd be doing

>really well, i feel.

>

>Thanks so anyone for reading my story. i am depressed, mainly b/c of

>lack of support. and everyday i cannot escape it. my endocrinologist

>just called and is increasing two meds and starting another. i broke

>down and cried!!! i am so sick of these meds....i just want to throw

>them all away.

>don't think i haven't thought on days when i couldn't even lay down

>in bed b/c the pain was too much -- anything touching my skin, my

>muscles, etc.

>

>too many nights of sitting up and just bawling b/c of the pain. sure,

>you think...cancer patients have an end in sight usually, but i

>cannot imagine what they go thru mentally.

>my memory these days is very shady, and honestly for someone so

>intelligent it is quite upsetting to not be able to remember. you

>know, i don't want to be labeled, at the same time I want something

>done as far as research to help " US " who are living and hurting and

>will continue to live. it breaks my heart when ppl look for options

>out...i will admit there are times when the pain consumes everything

>including rationality.

>Thanks for reading my bio, I look forward to getting to know each of

>you! Sissy

>

_________________________________________________________________

Don¢t miss your chance to WIN $10,000 and other great prizes from Microsoft

Office Live http://clk.atdmt.com/MRT/go/aub0540003042mrt/direct/01/

[Guest guest]

(((Sissy))),....Reading your bio is so like my life. I'm sure others

relate also. It's just a never ending struggle each day. I am 44yrs

old, and just tired. I'm so fatigued all the time, I can't really do

much anymore. I would rather just stay home, then to try and get

myself ready to go somewhere, because my body is screaming at me.

There is support here, if you need to chat, you can email me anytime.

Hugs, Tawny

[Guest guest]

Thanks for the link!

LadyC

Re: [ ] New to the group

>I had my fibromyalgia treated by this guy very successfully:

> www.fibromyalgiatreatment.com

> I went from bed to in 5 months hiking all over the great wall of China!

> Good luck,

>

>

> Sissy <sissygsapir@...> wrote:

> Hi everyone,

> My name is Sissy. I am 39 years old and have recently been diagnosed

> with fibromyalgia! I was diagnosed with degenerative disc disease in

> my back over eight years ago. Two and a half years ago, I had to stop

> my work in the healthcare field. I've suffered much with herniations,

> bulges, bone spurs, etc. I have 3 levels so there is nothing that can

> be done.

> Off and on, many other things started happening. I've been to every

> specialist I can think of.

> I was diagnosed with Hashimoto's disease (thyroid disease),

> osteomalacia (softening of the bones), onset of prediabetes, and now

> fibromyalgia. I'm on 22 prescription meds/day including two types of

> morphine for my back...an immediate release and a long acting one to

> help thru the night.

> I have extreme stomach problems when I get a flare up...starts with

> vomiting followed by extreme bouts of diarrhea....is this normal??? I

> know IBS is one of the symptoms, and I have restless legs as well

> which I did not know was a symptom. The pain feels like the

> flu...every joint and muscle in my body aches, my hair even

> hurts....many days I brush my teeth and bathe, but leave my hair

> alone. The fatigue I thought was a result of alot of the meds I am

> on. I sleep so much it seems and never get out unless I have a

> doctor's appt. Occasionally, I will go to see my daughter play

> sports, but then feel my husband has to tote everything.

> I was so athletic growing up, and fortunately still have much muscle

> mass left. I was highly intelligent and was quite successful.

> I feel now as if the rug has been pulled out from under me. I have

> lost my job that I dearly loved, my friends who are young and busy

> with being a parent, working, etc. rarely have time to visit.

> I feel as if I have been forgotten, and that all the world is living

> but me. People in the family will talk about where they went, what

> they did, etc. I never have anything new to add. I feel as if people

> think I'm just " playing " sick for sympathy or attention. Believe me,

> being alone as much as I am isn't " attention " . I live with my husband

> and two children. They totally ignore the fact that stress makes

> things worse even after I have told them. They interrupt my naps, not

> understanding I never get a full-night's sleep.

> It's difficult, b/c to the world...I do not look sick!!! If I do my

> hair and makeup...I look very normal. It takes me so long to go

> anywhere. I easily have sweat pop out on my face and neck b/c of the

> pain. To top it all off, I'm trying to get disability. I couldn't

> begin to estimate how many med charts I have had since this all began

> with my back. So now, money is an issue as well...for me! I've

> exhausted my resources!

> I know with the disc disease, it's very easy to see how the discs

> have deterioated, and you can see the disc fragments, bones spurs,

> vertbrae fracture, etc. With the other diseases and problems...you

> can see a labwork elevation or decrease. However, with

> fibromyalgia...there isn't an x-ray or lab test to prove it.

> My doctor pressed several areas in my body....some were so sore-it

> felt like i had been in a bad car accident. She noted that i have

> bursitis in both hips...another injection. if i could get paid for

> the amount ot times i have been stuck with a needle, i'd be doing

> really well, i feel.

>

> Thanks so anyone for reading my story. i am depressed, mainly b/c of

> lack of support. and everyday i cannot escape it. my endocrinologist

> just called and is increasing two meds and starting another. i broke

> down and cried!!! i am so sick of these meds....i just want to throw

> them all away.

> don't think i haven't thought on days when i couldn't even lay down

> in bed b/c the pain was too much -- anything touching my skin, my

> muscles, etc.

>

> too many nights of sitting up and just bawling b/c of the pain. sure,

> you think...cancer patients have an end in sight usually, but i

> cannot imagine what they go thru mentally.

> my memory these days is very shady, and honestly for someone so

> intelligent it is quite upsetting to not be able to remember. you

> know, i don't want to be labeled, at the same time I want something

> done as far as research to help " US " who are living and hurting and

> will continue to live. it breaks my heart when ppl look for options

> out...i will admit there are times when the pain consumes everything

> including rationality.

> Thanks for reading my bio, I look forward to getting to know each of

> you! Sissy

>

>

>

>

>

>

>

[Guest guest]

Sissy wrote:

>

> I>'m on 22 prescription meds/day including two types of

> morphine for my back...an immediate release and a long acting one to

> help thru the night.

> I have extreme stomach problems when I get a flare up...starts with

> vomiting followed by extreme bouts of diarrhea....is this normal???

>

I also take morphine (60 mgs. long acting) twice per day. It doesn't

give me stomach problems, but when I took methadone I thought I would

die from the vomiting and diarrhea it caused and I only took it three

days. Took me two months and four trips to the ER to get it under

control. So it may be the meds causing it. I've never had Fibro cause

any of those symptoms. All opiates have the reputation for causing

stomach problems.

Nina

[Guest guest]

Hi Sissy,

I have Fibro as well as RA. I cannot take Morphine or most of tghe

other pain meds as it causes vomiting. The only option the Docs give

me is learn to put up with the side effects or try a mild pain

reliever. Well as you can imagine I was not a happy camper LOL. But I

had to settle for Darvocet and when it gets real bad I go to ER and

they give me Demerol w/ Phenergan.I Also have had a spinal fusion C6

to C7. Have DJD, Osteoarthritis and RA. I hope that you find something

that can help you with your pain without making you so sick

Heidi

On 6/21/07, Nina <ncampbell@...> wrote:

> Sissy wrote:

> >

> > I>'m on 22 prescription meds/day including two types of

> > morphine for my back...an immediate release and a long acting one to

> > help thru the night.

> > I have extreme stomach problems when I get a flare up...starts with

> > vomiting followed by extreme bouts of diarrhea....is this normal???

> >

>

>

>

>

>

>

> I also take morphine (60 mgs. long acting) twice per day. It doesn't

> give me stomach problems, but when I took methadone I thought I would

> die from the vomiting and diarrhea it caused and I only took it three

> days. Took me two months and four trips to the ER to get it under

> control. So it may be the meds causing it. I've never had Fibro cause

> any of those symptoms. All opiates have the reputation for causing

> stomach problems.

>

> Nina

>

>

>

>

>

[Guest guest]

I had terrible fms, and got relief with the protocol at

www.fibromyalgiatreatment.com

Good Luck,

MElissa

Heidi Mendelsohn <hmendelsohn@...> wrote:

Hi Sissy,

I have Fibro as well as RA. I cannot take Morphine or most of tghe

other pain meds as it causes vomiting. The only option the Docs give

me is learn to put up with the side effects or try a mild pain

reliever. Well as you can imagine I was not a happy camper LOL. But I

had to settle for Darvocet and when it gets real bad I go to ER and

they give me Demerol w/ Phenergan.I Also have had a spinal fusion C6

to C7. Have DJD, Osteoarthritis and RA. I hope that you find something

that can help you with your pain without making you so sick

Heidi

On 6/21/07, Nina <ncampbell@...> wrote:

> Sissy wrote:

> >

> > I>'m on 22 prescription meds/day including two types of

> > morphine for my back...an immediate release and a long acting one to

> > help thru the night.

> > I have extreme stomach problems when I get a flare up...starts with

> > vomiting followed by extreme bouts of diarrhea....is this normal???

> >

>

>

>

>

>

>

> I also take morphine (60 mgs. long acting) twice per day. It doesn't

> give me stomach problems, but when I took methadone I thought I would

> die from the vomiting and diarrhea it caused and I only took it three

> days. Took me two months and four trips to the ER to get it under

> control. So it may be the meds causing it. I've never had Fibro cause

> any of those symptoms. All opiates have the reputation for causing

> stomach problems.

>

> Nina

>

>

>

>

>

[Guest guest]

Hi Niki,

I hope everything goes smoothlyfor you and Emma next week. It is a bit

intimidating at first, but babies adjust really quickly. we moms take

a little longer :-)

-christine

sydney 17 mo starband grad

>

> Hi all

> My little girl Emma (new band kid) will be getting the DOCband next

> week. I have gained so much more information from this group then I

> had hoped for and I am feeling much better about the journey ahead. It

> is so nice to have support.

>

> Thank you

> Niki

> Dallas Texas

>

[Guest guest]

Welcome Niki and Emma!  You will find this group to be a great support to answer almost all your questions!

 Jen and Luli - 18 mo.

Left Tort - Right Plagio - Hanger Band Grad - CA

tallulah jayne

www.babiesonline.com/babies/j/jens5th/

New to the group

Hi all

My little girl Emma (new band kid) will be getting the DOCband next

week. I have gained so much more information from this group then I

had hoped for and I am feeling much better about the journey ahead. It

is so nice to have support.

Thank you

Niki

Dallas Texas

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.