Re: Disappointed and unsure (long reply)

[Guest guest]

Dear Em,

The responses you've gotten to your post are on the mark! Be happy that

your bloodwork is normal--you have enough to deal with! Fibromyalgia won't

show up on bloodwork, because it doesn't involve malfunction of organs. It

is more a neurological illness.

I don't think your doctor fully understands Fibromyalgia, and I found some

of his comments a bit sexist. You don't need a boyfriend to feel better!

Sheesh!

There are some excellent websites about Fibromyalgia that will give you a

better understanding of what is going on in your body, and give you more

information to take to your doctor.

You need to be very careful of what sort of exercise program you start.

Your doctor's advice on that topic may not be the best advice to follow.

Understand that one of the main problems and causes of pain in Fibro is

muscle contractions. Therefore, *gentle* stretching may be the best

exercise. Be careful of activities that increase muscle contraction.

I remember reading something on a website about lactic acid buildup, and the

Fibro body processing this differently (?). This seems to account for the

pain that I experience with mild exercise (walking across a parking lot, or

up a flight of stairs, for example).

Is there a physical therapist in your area who has *successful* experience

working with Fibro patients? If so, perhaps your doctor would refer you to

that person for help in designing an exercise program to meet your needs.

I've heard that very gentle Yoga (there are different types--be careful) is

good, and maybe Tai Chi. Someone else wrote to you about water

exercise--I've heard that is good, too.

When I first sought help for my pain 15 years ago, I was told by a

rheumatologist that there was nothing wrong with me physically, but I was

probably depressed. He prescribed anti-depressants, which did not help me.

It's easy for us to be made to feel like fakers and malingerers. We don't

*look* sick or disabled. Our symptoms are diverse (I didn't know that my

irritable bowel, irritable bladder, TMJ, and panic disorder were all part of

the Fibro syndrome). Our symptoms change from moment to moment.

I told my boss a few weeks ago that getting to work on time for me is

difficult because of my symptoms. I told him that I know I might sound like

I'm making excuses--one day I might be having panic attacks, while another I

might be too stiff to move, or having irritable bowel attacks, or even

vomiting. But these are all part of the syndrome. Now he understands my

challenges and is much more patient with me.

You are doing all the right things. You eat well, you take care of

yourself, you watch your weight (weight gain is a symptom, naturally).

> So why do I feel like a complete idiotic hypochondriac failure?

Society tells us that if we take care of ourselves, eat a healthy diet,

exercise, and get plenty of rest, we will be healthy. For years I have been

told that if I got more sleep I wouldn't be tired. Duh!!! The problem is,

if you have Fibro it doesn't *matter* how much sleep you get, or how well

you eat. You're going to feel bad!

Years ago I went to a " lecture " given by my chiropractor's boss on " Chronic

Fatigue. " He basically said, " It's all your fault for not eating right or

sleeping right, blah blah blah. " I left before he was done, feeling very

angry.

We expect our health care givers to know more about illnesses and diseases

than we do--they're the ones who went to school and read the professional

journals.

Unfortunately, in the case of Fibromyalgia/CFS, *we* are all too often more

educated than our health care providers. This needs to change, but it won't

change on its own. We have to seek out or *demand* proper care, not to

mention recognition of our illness. (It wasn't until I got educated about my

illness that I could convince husband and boss to accommodate my needs.)

This list is a wonderful, international support group, where we can share

and learn and *know* that we are not odd or lazy or hypochondriacs or

malingerers. I'm also coming to feel that local support groups are a good

idea--find other people in your area who have Fibro/CFS and get together to

share your pain, frustration, and good ideas.

Find the websites with great information, print them out, and share them

with your doctor. If he shrugs it off, you need to find another doctor

(which may not be easy).

We've made progress over the decades. We now have a diagnosis! But we

don't yet have a comprehensive treatment plan for this illness. We all need

to find out what works for us, and share it with our fellow sufferers. I

think it's too dark in this tunnel to see any light at all, but I can almost

feel a little breeze--like there might be light up ahead.

Em, hang in there! Don't let that turkey get you down!

[We now return you to ee's regularly scheduled brain fog. <G>]

Love,

ee

[Guest guest]

Dear Em,

The responses you've gotten to your post are on the mark! Be happy that

your bloodwork is normal--you have enough to deal with! Fibromyalgia won't

show up on bloodwork, because it doesn't involve malfunction of organs. It

is more a neurological illness.

I don't think your doctor fully understands Fibromyalgia, and I found some

of his comments a bit sexist. You don't need a boyfriend to feel better!

Sheesh!

There are some excellent websites about Fibromyalgia that will give you a

better understanding of what is going on in your body, and give you more

information to take to your doctor.

You need to be very careful of what sort of exercise program you start.

Your doctor's advice on that topic may not be the best advice to follow.

Understand that one of the main problems and causes of pain in Fibro is

muscle contractions. Therefore, *gentle* stretching may be the best

exercise. Be careful of activities that increase muscle contraction.

I remember reading something on a website about lactic acid buildup, and the

Fibro body processing this differently (?). This seems to account for the

pain that I experience with mild exercise (walking across a parking lot, or

up a flight of stairs, for example).

Is there a physical therapist in your area who has *successful* experience

working with Fibro patients? If so, perhaps your doctor would refer you to

that person for help in designing an exercise program to meet your needs.

I've heard that very gentle Yoga (there are different types--be careful) is

good, and maybe Tai Chi. Someone else wrote to you about water

exercise--I've heard that is good, too.

When I first sought help for my pain 15 years ago, I was told by a

rheumatologist that there was nothing wrong with me physically, but I was

probably depressed. He prescribed anti-depressants, which did not help me.

It's easy for us to be made to feel like fakers and malingerers. We don't

*look* sick or disabled. Our symptoms are diverse (I didn't know that my

irritable bowel, irritable bladder, TMJ, and panic disorder were all part of

the Fibro syndrome). Our symptoms change from moment to moment.

I told my boss a few weeks ago that getting to work on time for me is

difficult because of my symptoms. I told him that I know I might sound like

I'm making excuses--one day I might be having panic attacks, while another I

might be too stiff to move, or having irritable bowel attacks, or even

vomiting. But these are all part of the syndrome. Now he understands my

challenges and is much more patient with me.

You are doing all the right things. You eat well, you take care of

yourself, you watch your weight (weight gain is a symptom, naturally).

> So why do I feel like a complete idiotic hypochondriac failure?

Society tells us that if we take care of ourselves, eat a healthy diet,

exercise, and get plenty of rest, we will be healthy. For years I have been

told that if I got more sleep I wouldn't be tired. Duh!!! The problem is,

if you have Fibro it doesn't *matter* how much sleep you get, or how well

you eat. You're going to feel bad!

Years ago I went to a " lecture " given by my chiropractor's boss on " Chronic

Fatigue. " He basically said, " It's all your fault for not eating right or

sleeping right, blah blah blah. " I left before he was done, feeling very

angry.

We expect our health care givers to know more about illnesses and diseases

than we do--they're the ones who went to school and read the professional

journals.

Unfortunately, in the case of Fibromyalgia/CFS, *we* are all too often more

educated than our health care providers. This needs to change, but it won't

change on its own. We have to seek out or *demand* proper care, not to

mention recognition of our illness. (It wasn't until I got educated about my

illness that I could convince husband and boss to accommodate my needs.)

This list is a wonderful, international support group, where we can share

and learn and *know* that we are not odd or lazy or hypochondriacs or

malingerers. I'm also coming to feel that local support groups are a good

idea--find other people in your area who have Fibro/CFS and get together to

share your pain, frustration, and good ideas.

Find the websites with great information, print them out, and share them

with your doctor. If he shrugs it off, you need to find another doctor

(which may not be easy).

We've made progress over the decades. We now have a diagnosis! But we

don't yet have a comprehensive treatment plan for this illness. We all need

to find out what works for us, and share it with our fellow sufferers. I

think it's too dark in this tunnel to see any light at all, but I can almost

feel a little breeze--like there might be light up ahead.

Em, hang in there! Don't let that turkey get you down!

[We now return you to ee's regularly scheduled brain fog. <G>]

Love,

ee

[Guest guest]

First off, thank you guys so immensely for your replies -- they are the

only thing that's kept me going these past couple of days. Y'all rock, you

know that? (Gentle) Group Hug!

At 10:57 AM 08/18/2001 -0400, ee Meade wrote:

>I don't think your doctor fully understands Fibromyalgia, and I found some

>of his comments a bit sexist. You don't need a boyfriend to feel better!

>Sheesh!

I think they're sexist too, more than a bit. If I just had a man, I'd feel

better? Um. Okay. So, um, all my thirtysomething friends who are

divorcing now, all my younger acquaintances who have major relationship

angst and stress -- those are the exception? My own history of really

stressing over various SO's doesn't count? It is just freakin' MEDIEVAL to

think that problems can be solved if you just get laid. I'm not saying sex

and relationships can't be healthy and great. I AM saying that I'm

unconvinced that a boyfriend could cure an illness. It would be lovely to

have someone in my life who loved me (besides my folks and my cat). But I

cannot imagine that it would CURE me.

>You need to be very careful of what sort of exercise program you start.

>Your doctor's advice on that topic may not be the best advice to follow.

>Understand that one of the main problems and causes of pain in Fibro is

>muscle contractions. Therefore, *gentle* stretching may be the best

>exercise. Be careful of activities that increase muscle contraction.

I am absolutely terrified for this very reason. I have trouble some days

just walking from the parking garage to the ER. What, I'm suddenly going

to do daily stairmaster workouts? It HURTS when I use my muscles. I am

game to try it, but I am worried, too, because I'm not excited about

anything that makes me feel *worse.*

>I remember reading something on a website about lactic acid buildup, and

>the Fibro body processing this differently (?). This seems to account for

>the pain that I experience with mild exercise (walking across a parking

>lot, or up a flight of stairs, for example).

I haven't found references to it, but I used to be extremely athletic --

bodybuilder -- and lactic acid poisoning is exactly what this feels

like. I've told my folks, my friends, my doctor -- it feels as if I lifted

20 kilos above my max and I'm paying for it. I used to lift over 100 kilos

(220 pounds). Now sometimes I have trouble getting jars open. Do I think

this is fake, or whatever? No. I think my muscles have some serious

problems. It hurts my muscles to CHEW, for crying out loud.

>Is there a physical therapist in your area who has *successful* experience

>working with Fibro patients? If so, perhaps your doctor would refer you

>to that person for help in designing an exercise program to meet your

>needs. I've heard that very gentle Yoga (there are different types--be

>careful) is good, and maybe Tai Chi. Someone else wrote to you about

>water exercise--I've heard that is good, too.

I'll be checking all this out. I have a weird phobia (terrified of

swimming pools, yes, that's a weird one, but it's a true phobia), so I'll

have to see if I can do any water work. My parents are yoga practitioners,

but I'd rather work with someone I'm not related to. *grin* But my doctor

just made me *furious* by saying " Exercise till you sweat. " Well, that's

not hard to accomplish -- walking ten feet uphill will usually do it.

>It's easy for us to be made to feel like fakers and malingerers. We don't

>*look* sick or disabled. Our symptoms are diverse (I didn't know that my

>irritable bowel, irritable bladder, TMJ, and panic disorder were all part

>of the Fibro syndrome). Our symptoms change from moment to moment.

ee, this part of your reply just freaked me out. I haven't until now

I guess, realized that my IBS and anxiety-and-panic disorders might be

related to FM. I was housebound for nearly 2 years because of panic

attacks and generalized anxiety. I have had IBS forever. My GOD, these

are all related to FM??? But no one ever told me that. No doctor,

nobody. DAMN it, it explains so much. My shrink tells me FM doesn't exist

-- even after he's been treating me for months for extreme anxiety and

panic attacks? I have had IBS since puberty; I didn't know it was called

IBS, but it's very typical in terms of symptoms and so on. I've found

donnatol (antispasmodic) can help, but that's only because a nice ER nurse

gave me a vial of it the other night when I was just miserable at work. My

doctors -- PCP, shrink, rheumatologist -- have simply ignored it.

>I told my boss a few weeks ago that getting to work on time for me is

>difficult because of my symptoms. I told him that I know I might sound

>like I'm making excuses--one day I might be having panic attacks, while

>another I might be too stiff to move, or having irritable bowel attacks,

>or even vomiting. But these are all part of the syndrome. Now he

>understands my challenges and is much more patient with me.

My rheumo told me that I'd be fired if I told my boss. " Don't do

it. " Great. So, don't ask don't tell isn't just for the military anymore,

is it? Alive and well at this hospital.

Thank you guys again for your replies. It is so deeply appreciated. I am

so glad to have a place where I can talk about my illness and not feel as

if I'm a big old faker. Now if I can somehow find a job or situation where

I can accommodate my illness and not be fired.

*another group hug*

Em

~~~~~~~~~~~~~

It is the tale, not he who tells it.

~~~~~~~~~~~~~

[Guest guest]

First off, thank you guys so immensely for your replies -- they are the

only thing that's kept me going these past couple of days. Y'all rock, you

know that? (Gentle) Group Hug!

At 10:57 AM 08/18/2001 -0400, ee Meade wrote:

>I don't think your doctor fully understands Fibromyalgia, and I found some

>of his comments a bit sexist. You don't need a boyfriend to feel better!

>Sheesh!

I think they're sexist too, more than a bit. If I just had a man, I'd feel

better? Um. Okay. So, um, all my thirtysomething friends who are

divorcing now, all my younger acquaintances who have major relationship

angst and stress -- those are the exception? My own history of really

stressing over various SO's doesn't count? It is just freakin' MEDIEVAL to

think that problems can be solved if you just get laid. I'm not saying sex

and relationships can't be healthy and great. I AM saying that I'm

unconvinced that a boyfriend could cure an illness. It would be lovely to

have someone in my life who loved me (besides my folks and my cat). But I

cannot imagine that it would CURE me.

>You need to be very careful of what sort of exercise program you start.

>Your doctor's advice on that topic may not be the best advice to follow.

>Understand that one of the main problems and causes of pain in Fibro is

>muscle contractions. Therefore, *gentle* stretching may be the best

>exercise. Be careful of activities that increase muscle contraction.

I am absolutely terrified for this very reason. I have trouble some days

just walking from the parking garage to the ER. What, I'm suddenly going

to do daily stairmaster workouts? It HURTS when I use my muscles. I am

game to try it, but I am worried, too, because I'm not excited about

anything that makes me feel *worse.*

>I remember reading something on a website about lactic acid buildup, and

>the Fibro body processing this differently (?). This seems to account for

>the pain that I experience with mild exercise (walking across a parking

>lot, or up a flight of stairs, for example).

I haven't found references to it, but I used to be extremely athletic --

bodybuilder -- and lactic acid poisoning is exactly what this feels

like. I've told my folks, my friends, my doctor -- it feels as if I lifted

20 kilos above my max and I'm paying for it. I used to lift over 100 kilos

(220 pounds). Now sometimes I have trouble getting jars open. Do I think

this is fake, or whatever? No. I think my muscles have some serious

problems. It hurts my muscles to CHEW, for crying out loud.

>Is there a physical therapist in your area who has *successful* experience

>working with Fibro patients? If so, perhaps your doctor would refer you

>to that person for help in designing an exercise program to meet your

>needs. I've heard that very gentle Yoga (there are different types--be

>careful) is good, and maybe Tai Chi. Someone else wrote to you about

>water exercise--I've heard that is good, too.

I'll be checking all this out. I have a weird phobia (terrified of

swimming pools, yes, that's a weird one, but it's a true phobia), so I'll

have to see if I can do any water work. My parents are yoga practitioners,

but I'd rather work with someone I'm not related to. *grin* But my doctor

just made me *furious* by saying " Exercise till you sweat. " Well, that's

not hard to accomplish -- walking ten feet uphill will usually do it.

>It's easy for us to be made to feel like fakers and malingerers. We don't

>*look* sick or disabled. Our symptoms are diverse (I didn't know that my

>irritable bowel, irritable bladder, TMJ, and panic disorder were all part

>of the Fibro syndrome). Our symptoms change from moment to moment.

ee, this part of your reply just freaked me out. I haven't until now

I guess, realized that my IBS and anxiety-and-panic disorders might be

related to FM. I was housebound for nearly 2 years because of panic

attacks and generalized anxiety. I have had IBS forever. My GOD, these

are all related to FM??? But no one ever told me that. No doctor,

nobody. DAMN it, it explains so much. My shrink tells me FM doesn't exist

-- even after he's been treating me for months for extreme anxiety and

panic attacks? I have had IBS since puberty; I didn't know it was called

IBS, but it's very typical in terms of symptoms and so on. I've found

donnatol (antispasmodic) can help, but that's only because a nice ER nurse

gave me a vial of it the other night when I was just miserable at work. My

doctors -- PCP, shrink, rheumatologist -- have simply ignored it.

>I told my boss a few weeks ago that getting to work on time for me is

>difficult because of my symptoms. I told him that I know I might sound

>like I'm making excuses--one day I might be having panic attacks, while

>another I might be too stiff to move, or having irritable bowel attacks,

>or even vomiting. But these are all part of the syndrome. Now he

>understands my challenges and is much more patient with me.

My rheumo told me that I'd be fired if I told my boss. " Don't do

it. " Great. So, don't ask don't tell isn't just for the military anymore,

is it? Alive and well at this hospital.

Thank you guys again for your replies. It is so deeply appreciated. I am

so glad to have a place where I can talk about my illness and not feel as

if I'm a big old faker. Now if I can somehow find a job or situation where

I can accommodate my illness and not be fired.

*another group hug*

Em

~~~~~~~~~~~~~

It is the tale, not he who tells it.

~~~~~~~~~~~~~

[Guest guest]

>

> I don't think your doctor fully understands

> Fibromyalgia, and I found some

> of his comments a bit sexist. You don't need a

> boyfriend to feel better!

> Sheesh!

Hahaha.....a boyfriend to feel better? NO WAY!!! The

women that have it best are the ones in long-term

marriages. Single women with this disease suffer

worse with a boyfriend because they will dump you if

you tell them the truth and if you don't tell them the

truth you will be forever making excuses for not being

able to do things that other people do (lying).

I have a boyfriend now after many years of being

single and I welcomed his company at first because I

was so lonely and wanted to feel like a " normal " woman

again. Now, after three months, he is late for dates

and even standing me up at times which causes me a

huge amount of stress that only makes me feel sicker.

So, all you single ladies out there whose doctors tell

you that you need boyfriends, don't listen. I am

seriously thinking of going back to being single

again.

It is better to be lonely than to feel the pain of

being rejected and taken for granted.

-Lynne

__________________________________________________

[Guest guest]

>

> I don't think your doctor fully understands

> Fibromyalgia, and I found some

> of his comments a bit sexist. You don't need a

> boyfriend to feel better!

> Sheesh!

Hahaha.....a boyfriend to feel better? NO WAY!!! The

women that have it best are the ones in long-term

marriages. Single women with this disease suffer

worse with a boyfriend because they will dump you if

you tell them the truth and if you don't tell them the

truth you will be forever making excuses for not being

able to do things that other people do (lying).

I have a boyfriend now after many years of being

single and I welcomed his company at first because I

was so lonely and wanted to feel like a " normal " woman

again. Now, after three months, he is late for dates

and even standing me up at times which causes me a

huge amount of stress that only makes me feel sicker.

So, all you single ladies out there whose doctors tell

you that you need boyfriends, don't listen. I am

seriously thinking of going back to being single

again.

It is better to be lonely than to feel the pain of

being rejected and taken for granted.

-Lynne

__________________________________________________

[Guest guest]

>

> I don't think your doctor fully understands

> Fibromyalgia, and I found some

> of his comments a bit sexist. You don't need a

> boyfriend to feel better!

> Sheesh!

Hahaha.....a boyfriend to feel better? NO WAY!!! The

women that have it best are the ones in long-term

marriages. Single women with this disease suffer

worse with a boyfriend because they will dump you if

you tell them the truth and if you don't tell them the

truth you will be forever making excuses for not being

able to do things that other people do (lying).

I have a boyfriend now after many years of being

single and I welcomed his company at first because I

was so lonely and wanted to feel like a " normal " woman

again. Now, after three months, he is late for dates

and even standing me up at times which causes me a

huge amount of stress that only makes me feel sicker.

So, all you single ladies out there whose doctors tell

you that you need boyfriends, don't listen. I am

seriously thinking of going back to being single

again.

It is better to be lonely than to feel the pain of

being rejected and taken for granted.

-Lynne

__________________________________________________

[Guest guest]

janissa@... wrote:

> At 10:57 AM 08/18/2001 -0400, ee Meade wrote:

>

> >I don't think your doctor fully understands Fibromyalgia, and I found some

> >of his comments a bit sexist. You don't need a boyfriend to feel better!

> >Sheesh!

>

> I think they're sexist too, more than a bit. If I just had a man, I'd feel

> better?

I think this falls into the " you'll feel much better if you fit into the

social norm " thinking. I wasn't even *dating* anyone at one point in my

life. People *knew* that, but *still* asked me " when are you going to

get married? " " as soon as I pull one of my dehydrated boyfriends off

the shelf and rehydrate him. " People expect you're going to go by the

social " norm " . You're going to date, get married, have a few kids, have

some grandkids, retire, travel, and if you deviate anywhere along the

line, they try to nudge you back in line. So if you're sick and not

married, get a boyfriend! He'll take care of you/give you someone to

take care of/provide for you/provide entertainment for you, give you

someone to marry, get your mind off your problem...as if your problems

were just a paper cut that you can forget about for a while.

> It is just freakin' MEDIEVAL to

> think that problems can be solved if you just get laid. I'm not saying sex

> and relationships can't be healthy and great. I AM saying that I'm

> unconvinced that a boyfriend could cure an illness. It would be lovely to

> have someone in my life who loved me (besides my folks and my cat). But I

> cannot imagine that it would CURE me.

Snort! When I was in boot camp and being fitted for my uniforms, my

pair of dress pants' crotch hung down like

4 inches below where it should have. When I complained to the

seamstress working on my uniforms, she told me " honey, what you need is

a *man* to fill that! " Aaahhh yeah, having sex with a guy would

definitely cause my pant's crotch to shrink to the proper size! I just

shook my head!

> I am absolutely terrified for this very reason. I have trouble some days

> just walking from the parking garage to the ER. What, I'm suddenly going

> to do daily stairmaster workouts? It HURTS when I use my muscles. I am

> game to try it, but I am worried, too, because I'm not excited about

> anything that makes me feel *worse.*

I didn't do very much on Thursday, but it was a bit more than normal. I

was so sick yesterday, all I could do was lay on the couch and watch

tv. By late afternoon, I felt up to reading a book. I'm definitely

going to be able to go out walking for a couple of miles! I think the

doctors miss the point, we are not *lazy*!! I want to be well enough to

go hiking and running around all day, if I could do that, I would be

doing it! I hate spending all of my time with the tv on. When I feel

good enough not to watch it and do other things I do do them.

> I'll be checking all this out. I have a weird phobia (terrified of

> swimming pools, yes, that's a weird one, but it's a true phobia), so I'll

> have to see if I can do any water work. My parents are yoga practitioners,

> but I'd rather work with someone I'm not related to. *grin* But my doctor

> just made me *furious* by saying " Exercise till you sweat. " Well, that's

> not hard to accomplish -- walking ten feet uphill will usually do it.

I'm not a big pool person either. Don't like water on my face.

Cleaning a few cat boxes can make me sweat. I really wish these people

could have a taste of our problems for a few weeks.

> ee, this part of your reply just freaked me out. I haven't until now

> I guess, realized that my IBS and anxiety-and-panic disorders might be

> related to FM. I was housebound for nearly 2 years because of panic

> attacks and generalized anxiety. I have had IBS forever. My GOD, these

> are all related to FM??? But no one ever told me that. No doctor,

> nobody. DAMN it, it explains so much.

They are what is called " associated " diseases. In other words, FM

didn't cause them, but they very frequently occur in people with FM.

Things like headaches or migraines, Gerds, and a few other things are

also associated with FM.

> I've found

> donnatol (antispasmodic) can help, but that's only because a nice ER nurse

> gave me a vial of it the other night when I was just miserable at work. My

> doctors -- PCP, shrink, rheumatologist -- have simply ignored it.

I think once again, IBS doesn't produce sores or scarring in the colon,

so it's like have an invisible disease. People say " oh it's just

diarrhea or constipation, I have that, it's not so bad " , but what they

forget is exactly how it feels to have diarrhea that won't stop, how

worn out you feel or how hard it can be to actually be able to go if

you're constipated. So they think it's not doing any physical harm,

it's not that bad, rather than realizing exactly how hard it is to have

IBS in terms of what you can eat, where bathrooms are, general level of

feeling good or bad, pain level and all the other things associated with

it.

Darcy

[Guest guest]

janissa@... wrote:

> At 10:57 AM 08/18/2001 -0400, ee Meade wrote:

>

> >I don't think your doctor fully understands Fibromyalgia, and I found some

> >of his comments a bit sexist. You don't need a boyfriend to feel better!

> >Sheesh!

>

> I think they're sexist too, more than a bit. If I just had a man, I'd feel

> better?

I think this falls into the " you'll feel much better if you fit into the

social norm " thinking. I wasn't even *dating* anyone at one point in my

life. People *knew* that, but *still* asked me " when are you going to

get married? " " as soon as I pull one of my dehydrated boyfriends off

the shelf and rehydrate him. " People expect you're going to go by the

social " norm " . You're going to date, get married, have a few kids, have

some grandkids, retire, travel, and if you deviate anywhere along the

line, they try to nudge you back in line. So if you're sick and not

married, get a boyfriend! He'll take care of you/give you someone to

take care of/provide for you/provide entertainment for you, give you

someone to marry, get your mind off your problem...as if your problems

were just a paper cut that you can forget about for a while.

> It is just freakin' MEDIEVAL to

> think that problems can be solved if you just get laid. I'm not saying sex

> and relationships can't be healthy and great. I AM saying that I'm

> unconvinced that a boyfriend could cure an illness. It would be lovely to

> have someone in my life who loved me (besides my folks and my cat). But I

> cannot imagine that it would CURE me.

Snort! When I was in boot camp and being fitted for my uniforms, my

pair of dress pants' crotch hung down like

4 inches below where it should have. When I complained to the

seamstress working on my uniforms, she told me " honey, what you need is

a *man* to fill that! " Aaahhh yeah, having sex with a guy would

definitely cause my pant's crotch to shrink to the proper size! I just

shook my head!

> I am absolutely terrified for this very reason. I have trouble some days

> just walking from the parking garage to the ER. What, I'm suddenly going

> to do daily stairmaster workouts? It HURTS when I use my muscles. I am

> game to try it, but I am worried, too, because I'm not excited about

> anything that makes me feel *worse.*

I didn't do very much on Thursday, but it was a bit more than normal. I

was so sick yesterday, all I could do was lay on the couch and watch

tv. By late afternoon, I felt up to reading a book. I'm definitely

going to be able to go out walking for a couple of miles! I think the

doctors miss the point, we are not *lazy*!! I want to be well enough to

go hiking and running around all day, if I could do that, I would be

doing it! I hate spending all of my time with the tv on. When I feel

good enough not to watch it and do other things I do do them.

> I'll be checking all this out. I have a weird phobia (terrified of

> swimming pools, yes, that's a weird one, but it's a true phobia), so I'll

> have to see if I can do any water work. My parents are yoga practitioners,

> but I'd rather work with someone I'm not related to. *grin* But my doctor

> just made me *furious* by saying " Exercise till you sweat. " Well, that's

> not hard to accomplish -- walking ten feet uphill will usually do it.

I'm not a big pool person either. Don't like water on my face.

Cleaning a few cat boxes can make me sweat. I really wish these people

could have a taste of our problems for a few weeks.

> ee, this part of your reply just freaked me out. I haven't until now

> I guess, realized that my IBS and anxiety-and-panic disorders might be

> related to FM. I was housebound for nearly 2 years because of panic

> attacks and generalized anxiety. I have had IBS forever. My GOD, these

> are all related to FM??? But no one ever told me that. No doctor,

> nobody. DAMN it, it explains so much.

They are what is called " associated " diseases. In other words, FM

didn't cause them, but they very frequently occur in people with FM.

Things like headaches or migraines, Gerds, and a few other things are

also associated with FM.

> I've found

> donnatol (antispasmodic) can help, but that's only because a nice ER nurse

> gave me a vial of it the other night when I was just miserable at work. My

> doctors -- PCP, shrink, rheumatologist -- have simply ignored it.

I think once again, IBS doesn't produce sores or scarring in the colon,

so it's like have an invisible disease. People say " oh it's just

diarrhea or constipation, I have that, it's not so bad " , but what they

forget is exactly how it feels to have diarrhea that won't stop, how

worn out you feel or how hard it can be to actually be able to go if

you're constipated. So they think it's not doing any physical harm,

it's not that bad, rather than realizing exactly how hard it is to have

IBS in terms of what you can eat, where bathrooms are, general level of

feeling good or bad, pain level and all the other things associated with

it.

Darcy

[Guest guest]

Hello, all,

I have something to contribute about the lactic acid connection, which was

referred to in ee’s post.

I remember reading an article, medical, online, about how FMS/CFS are (is) an

*energy deprivation disorder, which works on the cellular level of the body.

Each cell must make an energy supply from the food we eat, so it can be taken up

and used by the various parts of the body, in order to function properly.

I don’t have the link handy, so I’ll have to find it, but I’ll go on with my

understanding of it.

It was noted that the Kreb’s Cycle, which is the basic chemical action making

units of energy (ATPs), has an error in it, so that not enough energy is being

created for the body to use. And I remember from Microbiology in school that if

a muscle is overused, it runs out of ATP and then lactic acid is created around

the muscle fibers. This creates pain and fatigue. We have this generally,

instead of locally, as in a strained muscle. Those hurt for awhile and then the

lactic acid is normally reabsorbed, broken down, eliminated, then the pain goes

away. We have pain and fatigue all the time, because our cells are not making

enough ATP. We have lactic acid in the muscles mostly all the time. We have an

energy deprivation disorder, and we have it in many systems of our bodies, not

just the muscles. This causes many and diverse symptoms.

That’s one view about our DDs, anyway. But it makes sense to me, since I used to

be a high school athlele and remember my injuries and how they felt at the time.

It is the same now, only all over the bod, inside & out.

We also have neurotransmitter problems. It reminds me of Windows, which slowly

self-destruct, due to little glitches in the programming.

That’s all for now, I am really wilting in this chair, gonna try one more Vioxx

even tho I believe that this is not a inflammatory DD per se.

Thanks for everything, and

Aloha from Iris.

[Guest guest]

Hello, all,

I have something to contribute about the lactic acid connection, which was

referred to in ee’s post.

I remember reading an article, medical, online, about how FMS/CFS are (is) an

*energy deprivation disorder, which works on the cellular level of the body.

Each cell must make an energy supply from the food we eat, so it can be taken up

and used by the various parts of the body, in order to function properly.

I don’t have the link handy, so I’ll have to find it, but I’ll go on with my

understanding of it.

It was noted that the Kreb’s Cycle, which is the basic chemical action making

units of energy (ATPs), has an error in it, so that not enough energy is being

created for the body to use. And I remember from Microbiology in school that if

a muscle is overused, it runs out of ATP and then lactic acid is created around

the muscle fibers. This creates pain and fatigue. We have this generally,

instead of locally, as in a strained muscle. Those hurt for awhile and then the

lactic acid is normally reabsorbed, broken down, eliminated, then the pain goes

away. We have pain and fatigue all the time, because our cells are not making

enough ATP. We have lactic acid in the muscles mostly all the time. We have an

energy deprivation disorder, and we have it in many systems of our bodies, not

just the muscles. This causes many and diverse symptoms.

That’s one view about our DDs, anyway. But it makes sense to me, since I used to

be a high school athlele and remember my injuries and how they felt at the time.

It is the same now, only all over the bod, inside & out.

We also have neurotransmitter problems. It reminds me of Windows, which slowly

self-destruct, due to little glitches in the programming.

That’s all for now, I am really wilting in this chair, gonna try one more Vioxx

even tho I believe that this is not a inflammatory DD per se.

Thanks for everything, and

Aloha from Iris.

[Guest guest]

Hello, all,

I have something to contribute about the lactic acid connection, which was

referred to in ee’s post.

I remember reading an article, medical, online, about how FMS/CFS are (is) an

*energy deprivation disorder, which works on the cellular level of the body.

Each cell must make an energy supply from the food we eat, so it can be taken up

and used by the various parts of the body, in order to function properly.

I don’t have the link handy, so I’ll have to find it, but I’ll go on with my

understanding of it.

It was noted that the Kreb’s Cycle, which is the basic chemical action making

units of energy (ATPs), has an error in it, so that not enough energy is being

created for the body to use. And I remember from Microbiology in school that if

a muscle is overused, it runs out of ATP and then lactic acid is created around

the muscle fibers. This creates pain and fatigue. We have this generally,

instead of locally, as in a strained muscle. Those hurt for awhile and then the

lactic acid is normally reabsorbed, broken down, eliminated, then the pain goes

away. We have pain and fatigue all the time, because our cells are not making

enough ATP. We have lactic acid in the muscles mostly all the time. We have an

energy deprivation disorder, and we have it in many systems of our bodies, not

just the muscles. This causes many and diverse symptoms.

That’s one view about our DDs, anyway. But it makes sense to me, since I used to

be a high school athlele and remember my injuries and how they felt at the time.

It is the same now, only all over the bod, inside & out.

We also have neurotransmitter problems. It reminds me of Windows, which slowly

self-destruct, due to little glitches in the programming.

That’s all for now, I am really wilting in this chair, gonna try one more Vioxx

even tho I believe that this is not a inflammatory DD per se.

Thanks for everything, and

Aloha from Iris.

[Guest guest]

ee’s letter was great. This list is a wonderful, international support

group where we can share and know… know a lot of stuff. As she says, we do need

to educate ourselves about these DDs and we need to be proactive in our health

care and rights. I think we must take on the responsibility of educating not

only ourselves, but a Lot of MDs, social workers, bureaucrats, officials, etc,

And the general public as well.

I think we need to collect information about our DDs and put it together into a

research paper that is written in a scholarly way, and to submit it to some of

the journals for the MDs to see. We need to be more recognized as a group with

problems as troublesome to us as are groups with other DDs, Unfortunately, ours

is virtually invisible. We need to start an education process so we can be Seen.

We need to be connected with all the similar groups, so we can share more info &

healing...

There are a few studies that I have conceived, looking at the possible causes. I

want to find people who have been exposed to dangerous chemicals repeatedly, for

example, or to those who have had many surgeries—especially removal of the

tonsils and the appendix. I had chelation for a while, done in a roomful of

people, and there were many there who had neither appendix nor tonsils, and we

were all there because we had pain syndromes, fatigue, allergies, reactions to

environmental pollutants, or something similar.

I would like to write papers about our situation, in order to have more going on

to help us. If we all get together and pool our information, then it can be

processed and documented, cited properly, and send it around. No names, only

correlative information, data.

Think about it. Please let me know if you want to answer some questions. I don’t

want to know anybody’s weight, either, lol, it’s the same thing anyway, skinny

or fat and in between. I want to help all of us, while I can still type.

Aloha from Iris

ee’s letter was great. This list is a wonderful, international support

group where we can share and know… know a lot of stuff. As she says, we do need

to educate ourselves about these DDs and we need to be proactive in our health

care and rights. I think we must take on the responsibility of educating not

only ourselves, but a Lot of MDs, social workers, bureaucrats, officials, etc,

And the general public as well.

I think we need to collect information about our DDs and put it together into a

research paper that is written in a scholarly way, and to submit it to some of

the journals for the MDs to see. We need to be more recognized as a group with

problems as troublesome to us as are groups with other DDs, Unfortunately, ours

is virtually invisible. We need to start an education process so we can be Seen.

There are a few studies that I have conceived, looking at the possible causes. I

want to find people who have been exposed to dangerous chemicals repeatedly, for

example, or to those who have had many surgeries—especially removal of the

tonsils and the appendix. I had chelation for a while, done in a roomful of

people, and there were many there who had neither appendix nor tonsils, and we

were all there because we had pain syndromes, fatigue, allergies, reactions to

environmental pollutants, or something similar.

I want to write papers about our situation, in order to have more going on to

help us. If we all get together and pool our information, then it can be

processed and documented, cited properly, and send it around. No names, only

correlative information, data.

Think about it. Please let me know if you want to answer some questions. I don’t

want to know anybody’s weight, either, lol, it’s the same thing anyway, skinny

or fat and in between. I want to help all of us, while I can still type.

..

..

ee Meade wrote: Dear Em,

The responses you've gotten to your post are on the mark! Be happy that

your bloodwork is normal--you have enough to deal with! Fibromyalgia won't

show up on bloodwork, because it doesn't involve malfunction of organs. It

is more a neurological illness.

I don't think your doctor fully understands Fibromyalgia, and I found some

of his comments a bit sexist. You don't need a boyfriend to feel better!

Sheesh!

There are some excellent websites about Fibromyalgia that will give you a

better understanding of what is going on in your body, and give you more

information to take to your doctor.

You need to be very careful of what sort of exercise program you start.

Your doctor's advice on that topic may not be the best advice to follow.

Understand that one of the main problems and causes of pain in Fibro is

muscle contractions. Therefore, *gentle* stretching may be the best

exercise. Be careful of activities that increase muscle contraction.

I remember reading something on a website about lactic acid buildup, and the

Fibro body processing this differently (?). This seems to account for the

pain that I experience with mild exercise (walking across a parking lot, or

up a flight of stairs, for example).

Is there a physical therapist in your area who has *successful* experience

working with Fibro patients? If so, perhaps your doctor would refer you to

that person for help in designing an exercise program to meet your needs.

I've heard that very gentle Yoga (there are different types--be careful) is

good, and maybe Tai Chi. Someone else wrote to you about water

exercise--I've heard that is good, too.

When I first sought help for my pain 15 years ago, I was told by a

rheumatologist that there was nothing wrong with me physically, but I was

probably depressed. He prescribed anti-depressants, which did not help me.

It's easy for us to be made to feel like fakers and malingerers. We don't

*look* sick or disabled. Our symptoms are diverse (I didn't know that my

irritable bowel, irritable bladder, TMJ, and panic disorder were all part of

the Fibro syndrome). Our symptoms change from moment to moment.

I told my boss a few weeks ago that getting to work on time for me is

difficult because of my symptoms. I told him that I know I might sound like

I'm making excuses--one day I might be having panic attacks, while another I

might be too stiff to move, or having irritable bowel attacks, or even

vomiting. But these are all part of the syndrome. Now he understands my

challenges and is much more patient with me.

You are doing all the right things. You eat well, you take care of

yourself, you watch your weight (weight gain is a symptom, naturally).

> So why do I feel like a complete idiotic hypochondriac failure?

Society tells us that if we take care of ourselves, eat a healthy diet,

exercise, and get plenty of rest, we will be healthy. For years I have been

told that if I got more sleep I wouldn't be tired. Duh!!! The problem is,

if you have Fibro it doesn't *matter* how much sleep you get, or how well

you eat. You're going to feel bad!

Years ago I went to a " lecture " given by my chiropractor's boss on " Chronic

Fatigue. " He basically said, " It's all your fault for not eating right or

sleeping right, blah blah blah. " I left before he was done, feeling very

angry.

We expect our health care givers to know more about illnesses and diseases

than we do--they're the ones who went to school and read the professional

journals.

Unfortunately, in the case of Fibromyalgia/CFS, *we* are all too often more

educated than our health care providers. This needs to change, but it won't

change on its own. We have to seek out or *demand* proper care, not to

mention recognition of our illness. (It wasn't until I got educated about my

illness that I could convince husband and boss to accommodate my needs.)

This list is a wonderful, international support group, where we can share

and learn and *know* that we are not odd or lazy or hypochondriacs or

malingerers. I'm also coming to feel that local support groups are a good

idea--find other people in your area who have Fibro/CFS and get together to

share your pain, frustration, and good ideas.

Find the websites with great information, print them out, and share them

with your doctor. If he shrugs it off, you need to find another doctor

(which may not be easy).

We've made progress over the decades. We now have a diagnosis! But we

don't yet have a comprehensive treatment plan for this illness. We all need

to find out what works for us, and share it with our fellow sufferers. I

think it's too dark in this tunnel to see any light at all, but I can almost

feel a little breeze--like there might be light up ahead.

Em, hang in there! Don't let that turkey get you down!

[We now return you to ee's regularly scheduled brain fog. <G>]

Love,

ee