Re: Fwd: (Diane) Re: Rice Crispy Neck

[Guest guest]

Hi Diane...

On the chest pain...did they check you for gallbladder problems? They

checked me for over a YEAR and finally found out that most of my chest pain

was from a rotten gallbladder...and that thing caused me so much pain. Even

after I had surgery, which was back in June, it took months for the pain to

stop, and the electricity feeling in my chest, neck, shoulders, and back

area to go away. Every once in a while, I get that electrical feeling again,

and kind of freak.

Gentle hugs,

K.

-- Re: Fwd: Re: Rice Crispy Neck

Hi Diane,

I don't think I've ever heard it put that way before, but I have the same

thing. Not all the time, but a lot of the time. I try to tell my doctor

that is sounds like snaps and crackles, but I forgot about the pop. Never

related it to rice crispies, but that is the perfect description. I have a

pretty good range of motion at least, but it hurts if I go too far, like

when I'm looking backward to back the car up.

I've also had the bad chest pains. Mine are just below the breast bone

and then continue down the side of my abdomen. I've been to the emergency

room it has been so bad.

Thankfully I don't have a sensation of walking on glass, but if I don't

wear just the right shoes my hips hurt terribly. My left hip hurts anyway.

My hands and particularly my feet have spasms and cramps that come out of

nowhere. I do have involuntary shakes too.

Aren't you glad to hear all of this. I guess it might be good to know you

are not alone, but I guess they are symptoms of fibromyalgia, although who

knows anymore.

ttfn,

[Guest guest]

Diane...

So you had the electrical shock feelings also when your gallbladder went

bad? That was the scariest most painful part for me.

-- Re: Fwd: Re: Rice Crispy Neck

>

> Hi Diane,

> I don't think I've ever heard it put that way

> before, but I have the same

> thing. Not all the time, but a lot of the time. I

> try to tell my doctor

> that is sounds like snaps and crackles, but I forgot

> about the pop. Never

> related it to rice crispies, but that is the perfect

> description. I have a

> pretty good range of motion at least, but it hurts

> if I go too far, like

> when I'm looking backward to back the car up.

> I've also had the bad chest pains. Mine are just

> below the breast bone

> and then continue down the side of my abdomen. I've

> been to the emergency

> room it has been so bad.

> Thankfully I don't have a sensation of walking on

> glass, but if I don't

> wear just the right shoes my hips hurt terribly. My

> left hip hurts anyway.

> My hands and particularly my feet have spasms and

> cramps that come out of

> nowhere. I do have involuntary shakes too.

> Aren't you glad to hear all of this. I guess it

> might be good to know you

> are not alone, but I guess they are symptoms of

> fibromyalgia, although who

> knows anymore.

> ttfn,

>

> [Non-text portions of this message have been

> removed]

>

>

>

> 1. While it is wonderful to share our experiences

> with everyone on the list as to what treatments do

> and don't work for us, pls always check with your

> dr. Some treatments are dangerous when given along

> with other meds as well as to certain health

> conditions or just dangerous in general.

>

> 2. If you are in a difficult situation (doesn't

> matter what it is) pls don't be afraid to ask for

> help. It is the first step to trying to make that

> situation better.

>

> 3. To unsubscribe the e-mail is:

>

Fibromyalgia_Support_Group-unsubscribe

>

> 4. Also, it is not uncommon for more than one member

> to be feeling bad at the same time when it comes to

> flares and b/c of that potentially take something

> another member says the wrong way. And that

> includes the things that one member may find funny

> (even if it's laughing at fibro itself) even though

> we who deal with illness whether one such as fibro

> or multiple illnesses try to keep a sense of humor.

>

> 5. Pls let's be gentle with each other, and if you

> are having a bad day pls let us know so that we can

> do our best to offer our support.

>

> Have a nice day everyone.

>

>

[Guest guest]

Is your rheumy doing anything to help with the pain? I hope so, it's very hard,

and you have so many other painful conditions on top of it all. Those should be

relatively easy for your friends and family to understand, or I would hope so.

There are many great links on our site you can use to educate people about the

other conditions. You can send them the links or print some of the info out and

give it to them to read. I don't know how it can be so hard for people to accept

that we are indeed ill, but of course it is. My own daughter still doesn't

really 'get it', and I've been ill since she was under 2 years old. A few months

ago a woman I considered a good friend dropped me cold as I couldn't always do

what I said, and even though I did send her all the links, etc, she said she has

better things to do than make plans with someone who cancels them at the last

moment. I don't blame people sometimes, but it still hurts.

Well, life goes on anyway. I know how hard this all is. I'm sorry we have these

nasty things. At least you have a husband who understands, that would help for

sure.

Peace and Love

Caroline

> far as my Gall Bladder i had several acute attacks

> that gave me chest and abdominal pain so bad i would

> find my self waking up on the floor. that was in 99.

> shortly after the fall which was in 97. I have had so

> many steroid injections in my left shoulder joint and

> scapula region i have lost count, now my right

> shoulder is giving me fits. my right hip has OA and

> have been told i will probably end up with hip

> replacement within a year.

> i have not had one day in the last 10 with out pain.

> so when i finally asked my primary care dr last summer

> to send me to someone cause i couldn't take it any

> more she put me on the lexapro and sent me to Rheum.

> my hubby has epilepsy and belongs to a online goup

> and told me to see if i could find one on Fibro. thank

> goodness i did, i for sure don't think i am crazy

> anymore.

> just one question how do you educate family on this

> stuff?

>

> Diane

____________________________________________________________

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[Guest guest]

Hi Diane...

I bought books on it, and kept them laying around when my friends would come

to visit...and being that people are often " nosey " ...they would pick them up

and thumb through them. I also printed out a poster on this site, its the

black and white one, and would pass it around to them, and say...this is

what I deal with, and when I don't say words right, or I complain about my

pain over and over again, please just try to remember this http://www

fibrohugs.com/staticpages/index.php?page=20040408162126370

Some of my friends would come over in the beginning before I had my

gallbladder removed and they could see I was sick bad. I lost 147 lbs. In a

years time before the docs found the dead gallbladder. I couldn't eat, and

when I did, it was babyfood...and it didn't always stay down. So most of

them saw me sick and in pain, and knew there was something going on.

Although some are still around, by phone only nowadays it seems, I feel as

if they do understand, but are afraid, even though I have told them time

after time fibro is not contagious...I feel as if they worry about " catching

it.

-- Re: Fwd: Re: Rice Crispy Neck

> >

> > Hi Diane,

> > I don't think I've ever heard it put that way

> > before, but I have the same

> > thing. Not all the time, but a lot of the time.

> I

> > try to tell my doctor

> > that is sounds like snaps and crackles, but I

> forgot

> > about the pop. Never

> > related it to rice crispies, but that is the

> perfect

> > description. I have a

> > pretty good range of motion at least, but it hurts

> > if I go too far, like

> > when I'm looking backward to back the car up.

> > I've also had the bad chest pains. Mine are

> just

> > below the breast bone

> > and then continue down the side of my abdomen.

> I've

> > been to the emergency

> > room it has been so bad.

> > Thankfully I don't have a sensation of walking

> on

> > glass, but if I don't

> > wear just the right shoes my hips hurt terribly.

> My

> > left hip hurts anyway.

> > My hands and particularly my feet have spasms and

> > cramps that come out of

> > nowhere. I do have involuntary shakes too.

> > Aren't you glad to hear all of this. I guess it

> > might be good to know you

> > are not alone, but I guess they are symptoms of

> > fibromyalgia, although who

> > knows anymore.

> > ttfn,

> >

> > [Non-text portions of this message have been

> > removed]

> >

> >

> >

> > 1. While it is wonderful to share our experiences

> > with everyone on the list as to what treatments do

> > and don't work for us, pls always check with your

> > dr. Some treatments are dangerous when given

> along

> > with other meds as well as to certain health

> > conditions or just dangerous in general.

> >

> > 2. If you are in a difficult situation (doesn't

> > matter what it is) pls don't be afraid to ask for

> > help. It is the first step to trying to make that

> > situation better.

> >

> > 3. To unsubscribe the e-mail is:

> >

>

Fibromyalgia_Support_Group-unsubscribe

> >

> > 4. Also, it is not uncommon for more than one

> member

> > to be feeling bad at the same time when it comes

> to

> > flares and b/c of that potentially take something

> > another member says the wrong way. And that

> > includes the things that one member may find funny

> > (even if it's laughing at fibro itself) even

> though

> > we who deal with illness whether one such as fibro

> > or multiple illnesses try to keep a sense of

> humor.

> >

> > 5. Pls let's be gentle with each other, and if you

> > are having a bad day pls let us know so that we

> can

> > do our best to offer our support.

> >

> > Have a nice day everyone.

> >

> >

[Guest guest]

Caroline...

I think what gets " normal folks " the most, is that we don't look sick..

although I do have a lot of days, I do look sick. I'm pale, tired looking,

grimace a lot. But the next day, sometimes that all can go away and I look

fine.

Its a wicked thing we deal with, and its wonderful to have groups like this.

Maybe some of our friends should join some groups like this and just sit

back and read what we live with.

. K.

-- Re: Fwd: (Diane) Re: Rice Crispy Neck

Is your rheumy doing anything to help with the pain? I hope so, it's very

hard, and you have so many other painful conditions on top of it all. Those

should be relatively easy for your friends and family to understand, or I

would hope so. There are many great links on our site you can use to educate

people about the other conditions. You can send them the links or print some

of the info out and give it to them to read. I don't know how it can be so

hard for people to accept that we are indeed ill, but of course it is. My

own daughter still doesn't really 'get it', and I've been ill since she was

under 2 years old. A few months ago a woman I considered a good friend

dropped me cold as I couldn't always do what I said, and even though I did

send her all the links, etc, she said she has better things to do than make

plans with someone who cancels them at the last moment. I don't blame people

sometimes, but it still hurts.

Well, life goes on anyway. I know how hard this all is. I'm sorry we have

these nasty things. At least you have a husband who understands, that would

help for sure.

Peace and Love

Caroline

> far as my Gall Bladder i had several acute attacks

> that gave me chest and abdominal pain so bad i would

> find my self waking up on the floor. that was in 99.

> shortly after the fall which was in 97. I have had so

> many steroid injections in my left shoulder joint and

> scapula region i have lost count, now my right

> shoulder is giving me fits. my right hip has OA and

> have been told i will probably end up with hip

> replacement within a year.

> i have not had one day in the last 10 with out pain.

> so when i finally asked my primary care dr last summer

> to send me to someone cause i couldn't take it any

> more she put me on the lexapro and sent me to Rheum.

> my hubby has epilepsy and belongs to a online goup

> and told me to see if i could find one on Fibro. thank

> goodness i did, i for sure don't think i am crazy

> anymore.

> just one question how do you educate family on this

> stuff?

>

> Diane

____________________________________________________________

FREE 3D EARTH SCREENSAVER - Watch the Earth right on your desktop!

Check it out at http://www.crawler.com/earth

1. While it is wonderful to share our experiences with everyone on the list

as to what treatments do and don't work for us, pls always check with your

dr. Some treatments are dangerous when given along with other meds as well

as to certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't

be afraid to ask for help. It is the first step to trying to make that

situation better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at

the same time when it comes to flares and b/c of that potentially take

something another member says the wrong way. And that includes the things

that one member may find funny (even if it's laughing at fibro itself) even

though we who deal with illness whether one such as fibro or multiple

illnesses try to keep a sense of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls

let us know so that we can do our best to offer our support.

Have a nice day everyone.

[Guest guest]

Yes it never ceases to amaze me how " pro active " celebrities and politicians

become when there is a personal interest involved. Just look at autism and

breast cancer, everywhere I look there is a tag or a puzzle piece, 10 years ago

when my kids where newly diagnosed NO ONE had ever heard of it now 1 in 100 has

it. Its sad but the more people who get this the better the chance that a cure

will be made.

Re: Fwd: (Diane) Re: Rice Crispy Neck

In theory that would be a great idea, in reality those who need it most would

say they have better things to do than listen to a bunch of 'losers' whine. I

often think they deliberately refuse to 'get it'. They don't care. If it doesn't

affect their own lives...or sometimes, even if it does, but indirectly, they

consider us a 'waste of time', as Liz basically said straigh out to me.

Peace and Love

Caroline

> Caroline...

>

> I think what gets " normal folks " the most, is that we don't look sick..

> although I do have a lot of days, I do look sick. I'm pale, tired

> looking,

> grimace a lot. But the next day, sometimes that all can go away and I

> look

> fine.

>

> Its a wicked thing we deal with, and its wonderful to have groups like

> this.

> Maybe some of our friends should join some groups like this and just sit

> back and read what we live with.

> . K.

____________________________________________________________

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1. While it is wonderful to share our experiences with everyone on the list as

to what treatments do and don't work for us, pls always check with your dr.

Some treatments are dangerous when given along with other meds as well as to

certain health conditions or just dangerous in general.

2. If you are in a difficult situation (doesn't matter what it is) pls don't be

afraid to ask for help. It is the first step to trying to make that situation

better.

3. To unsubscribe the e-mail is:

Fibromyalgia_Support_Group-unsubscribe

4. Also, it is not uncommon for more than one member to be feeling bad at the

same time when it comes to flares and b/c of that potentially take something

another member says the wrong way. And that includes the things that one member

may find funny (even if it's laughing at fibro itself) even though we who deal

with illness whether one such as fibro or multiple illnesses try to keep a sense

of humor.

5. Pls let's be gentle with each other, and if you are having a bad day pls let

us know so that we can do our best to offer our support.

Have a nice day everyone.