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,

I kept complaining of similar problems with sllep/fatigue, and guess what?

It is a type of " atypical " sleep apnea, which my doc says is from the EDS.

He says because soft tissues are lax, they collapse, and partially obstruct,

or obstruct the airways causing low oxygen, and poor sleep, as deep sleep is

difficult to achieve. He also said it is a big factor in the fibromyalgia,

as the muscles are not allowed to repair, as you don't ever reach deep sleep.

And hence, the extreme fatigue, and muscle fatigue and pain. He is doing an

informal study with his patients with EDS, by doing a sleep study on

each/those willing, and so far each and every one of us have been found to

have the episodes of low oxygen during sleep. Being a nurse, I was shocked

to awaken, which I routinely do all night, and see very low heart rate, in

the forties, and oxygen, at 68%! Normal oxygen is 98%-100% for the average

individual, unless there is an underlying disorder, but once you hit 88%,

most insurance companies use that for criteria for supplying oxygen. So now

I don't know how I will travel with oxygen, for the conference, but will

figure that out later, I can probably get some feedback from the oxygen

company. So, ask him about this, as all it takes is a simple overnight pulse

ox test. Take Care. Love, Sue Ginley

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> As you all know, I am recovering from a wrist surgery. As I

contracted a

> staph. A infection, I was put on antibiotics which I finish 1 May

(a six

> week course), which can't come to soon given the stomach problems

it is

> contributing to. Over the last week or two I have been extremely

> fatigued the whole time. I am on meds. for the fibro, so I don't

think

>

I don't know about you, but any time I am on antibiotics, especially

when I am on a long course, I get very fatigued. Antibiotics have

always made me incredibly tired. Don't know why that is. Maybe my

body is working so hard at combatting the infection or something.

I hope that it is something that simple!

Joy

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  • 10 months later...
Guest guest

That's great, Derrick. I started out with 10,000 units per week until my

hematocrit reached 38 and then gradually cut down to 5,000 units per week to

maintain the 36 hematocrit. I absolutely could not function without this

wonder drug. What's your hematocrit with the 10,000 units?

Diane

Re: fatigue

Diane,

I am aneamic and take 10,000 units per week of Eprex by self

injection. I didn't notice much at first but 4 weeks into the therapy, I am

not as tired.It has made a difference for me too.

Derrick

Sydney, Australia

fatigue

I was diagnosed with IgAN in October and am always tired. I am not

just tired from a stressful day or just tired on occasion, but am

totally exausted all the time. If I go shopping for an hour or so it

takes me two days to recover, I asked my nephrologist if it was

because of the IgAN and he said no it wasn't related and that the

only affects of IgAN that I should notice is blood in my urine. I've

been to my general practioner and my gynocologist and they can't find

any thing wrong with me. I am 27 years old and am in perfect health

other than the IgAN, is my nephrologist wrong, can IgAN cause such

fatigue? I don't even take the ace inhibitor the dr. precscribed for

me because it makes me so weak and tired that I can't even get out of

bed. I've tried everthing that I could think of to increase my

energy level, even yoga and meditation, but nothing seems to work.

Do you have any suggestions or does anyone else have the same problem?

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Thank you for your response and suggestions. I live in Texas in the US so

the weather is almost always nice enough for a daily walk. Good luck with

everything and thanks again.

TINA

>

>Reply-To: iga-nephropathy

>To: <iga-nephropathy >

>Subject: RE: fatigue

>Date: Wed, 13 Mar 2002 09:01:03 +1100

>

>I feel a lot less fatigued than six months ago. I take a multivitamin

>(Dr’s

>orders), take a half hour walk every day, meditate every day, have a

>massage

>once a month and attempt to get good sleep (not always easy). I also take

>a

>few moments out in the sun when I can (which is easier when you live in

>Australia). The main differences in my lifestyle in Australia as opposed

>to

>London are the sunshine (does anyone know what Vitamin D is good for?),

>fresher air, fresher organic vegetables from the market, and a more

>positive

>outlook. My new nephrologist’s attitude is more positive than the London

>one which makes a huge difference as I don’t feel like I am fighting him

>every inch of the way as well, and I don’t feel “terminal” anymore. When

>you look at your lifestyle, you may be able to find little things to change

>that can make a huge difference over time. Change the every day products

>that you use, maybe adding scented candles and other little things that

>make

>you feel less deathly, taking a little exercise and gradually rebuilding

>your stamina, renewing your relationship with the god of your choice. Do

>the Oprah thing and make time for yourself!

>

>

> fatigue

>

>I was diagnosed with IgAN in October and am always tired. I am not

>just tired from a stressful day or just tired on occasion, but am

>totally exausted all the time. If I go shopping for an hour or so it

>takes me two days to recover, I asked my nephrologist if it was

>because of the IgAN and he said no it wasn't related and that the

>only affects of IgAN that I should notice is blood in my urine. I've

>been to my general practioner and my gynocologist and they can't find

>any thing wrong with me. I am 27 years old and am in perfect health

>other than the IgAN, is my nephrologist wrong, can IgAN cause such

>fatigue? I don't even take the ace inhibitor the dr. precscribed for

>me because it makes me so weak and tired that I can't even get out of

>bed. I've tried everthing that I could think of to increase my

>energy level, even yoga and meditation, but nothing seems to work.

>Do you have any suggestions or does anyone else have the same problem?

>

>

>

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Thank you for your response, I really appreciate it.

TINA

>

>Reply-To: iga-nephropathy

>To: " 'iga-nephropathy ' " <iga-nephropathy >

>Subject: RE: fatigue

>Date: Tue, 12 Mar 2002 14:14:49 -0800

>

>I was diagnosed with IgAN two and a half years ago. About 2 months after

>diagnosis, I became so exhausted that I could barely function. My

>hematocrit was 27 at that time so I began Epoetin therapy, which has worked

>very well. I inject 5,000 units per week to maintain a hematocrit of 36.

>I

>haven't noticed any side effects from the ace inhibitor, although the beta

>blocker does cause a bit of lethargy. Hope this info helps!

>

> fatigue

>

>

>I was diagnosed with IgAN in October and am always tired. I am not

>just tired from a stressful day or just tired on occasion, but am

>totally exausted all the time. If I go shopping for an hour or so it

>takes me two days to recover, I asked my nephrologist if it was

>because of the IgAN and he said no it wasn't related and that the

>only affects of IgAN that I should notice is blood in my urine. I've

>been to my general practioner and my gynocologist and they can't find

>any thing wrong with me. I am 27 years old and am in perfect health

>other than the IgAN, is my nephrologist wrong, can IgAN cause such

>fatigue? I don't even take the ace inhibitor the dr. precscribed for

>me because it makes me so weak and tired that I can't even get out of

>bed. I've tried everthing that I could think of to increase my

>energy level, even yoga and meditation, but nothing seems to work.

>Do you have any suggestions or does anyone else have the same problem?

>

>

>

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  • 1 month later...
Guest guest

Hi . I've never heard of such a sticker on a ACE inhibitor, but in any

event, I can guarantee that the risk of any problems regarding mental

alertness are very, very remote. Unlike some BP meds, like clonidine,

methyldopa, beta blockers - ACE inhibitors just don't have any direct effect

on the brain.

Pierre

fatigue

When I picked up my latest batch of Ace Inhibitors from the chemist there

was a lovely big orange sticker on the box which has never been there

before. It said " This medicine may affect mental alertness an/or

co-ordination. If affected, do not drive a motor vehicle or operate

machinery " .

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,

I had the same sticker on Tenormin, a beta blocker, and one of the

three medicants I take to control blood pressure. It was not on my previous

scripts. It may be an Australia wide initiative to cover the medical

profession should anything happen. The only side effect I have noticed from

Tenormin is vivid sometimes frightening dreams. (I can live with that if it

controls my blood pressure).

Derrick

Sydeny, Australia

fatigue

When I picked up my latest batch of Ace Inhibitors from the chemist there

was a lovely big orange sticker on the box which has never been there

before. It said " This medicine may affect mental alertness an/or

co-ordination. If affected, do not drive a motor vehicle or operate

machinery " .

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Hi .

I've had pharmacists put different stickers on the same meds, etc. One time,

the guy forgot to put a sticker on my doxycycline (sp?). It was several

years ago and I didn't know that you were supposed to stay out of the sun

while taking it. I went to a Rennaisance Fair that weekend and got burnt to

a crisp. : ) I usually tolerate the sun very well.

Marty

fatigue

When I picked up my latest batch of Ace Inhibitors from the chemist there

was a lovely big orange sticker on the box which has never been there

before. It said " This medicine may affect mental alertness an/or

co-ordination. If affected, do not drive a motor vehicle or operate

machinery " .

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Guest guest

Tenormin's a beautiful thing...I like how it lowers my pulse. Sometimes after

dialysis, my pulse will be 136 bpm because the heart tries to compensate for the

sudden change in volume.

Marty

fatigue

When I picked up my latest batch of Ace Inhibitors from the chemist there

was a lovely big orange sticker on the box which has never been there

before. It said " This medicine may affect mental alertness an/or

co-ordination. If affected, do not drive a motor vehicle or operate

machinery " .

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Guest guest

I just thought it was funny, as we have often debated the cause of the

fatigue that we have. Now I have an official sticker that tells me it is

the drug not me.

Derrick – hope the dreams get better!

Re: fatigue

Hi . I've never heard of such a sticker on a ACE inhibitor, but in any

event, I can guarantee that the risk of any problems regarding mental

alertness are very, very remote. Unlike some BP meds, like clonidine,

methyldopa, beta blockers - ACE inhibitors just don't have any direct effect

on the brain.

Pierre

fatigue

When I picked up my latest batch of Ace Inhibitors from the chemist there

was a lovely big orange sticker on the box which has never been there

before. It said " This medicine may affect mental alertness an/or

co-ordination. If affected, do not drive a motor vehicle or operate

machinery " .

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Guest guest

,

I don't think they will. According to my doc. it is a side effect

with just some people so they must do something to the subconcious mind

hence the orange warning sticker!

Derrick

Sydney, Australia

fatigue

When I picked up my latest batch of Ace Inhibitors from the chemist there

was a lovely big orange sticker on the box which has never been there

before. It said " This medicine may affect mental alertness an/or

co-ordination. If affected, do not drive a motor vehicle or operate

machinery " .

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  • 1 month later...
Guest guest

,

Don't know if it helps, but I had considered training to become a nurse.

Last week I phoned up the occupational therapist connected with Canterbury

Christchurch University to see whether my health problems would be a bar to

getting accepted on their nursing course and they said most definitely not.

I think I recently posted that in addition to my IGA I have had a cancer

scare and am now on a 12 weekly check up for life. Christchurch were made

aware of both of these health problems. I must admit I do sometimes feel a

bit of a fraud on this site as I am on no medication whatsoever for my IGA,

suffer no tiredness despite running round after 2 young children, and as far

as my IGA is concerned, it is like an invisible illness. Apart from 6

monthly checks, I would not know anything was wrong.

What with President Blair (Whoops), meant to say Tony Blair's political

correctness, equal opportunities, race relations, sex equality and every

other thing he's big on, I can't see how, if you want to work, you are being

denied the chance to work - but who am I to know!

Have you tried Citizens Advice Bureau or even tried asking your Kidney

Specialist's opinion on whether he feels you can work. I'm sure if he's in

agreement that you are fit for work, any Company that refuses you an

interview is on very dodgy ground.

Good luck,

Frances

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Hi

As far as I can make out we're not covered by the Disability Act (unless you

know otherwise) so they can pretty much do as they please!

Thanks for the best wishes anyway, Im sure someone will be daft enough in

the end to give me a job!!

Regards

Fatigue

> >

> >

> > So many comments about fatigue in various threads that I thought I

> > would

> > just start a new subject line.

> >

> > The thing about fatigue is that, whether one has it or not, and

> > whether

> > one's nephrologist thinks it is or it isn't related to IgAN, there

> > isn't a

> > heck of a lot anyone can do about it. It's not like they have a

> magic

> > energy

> > pill they can give you.

> >

> > Plus, fatigue can be attributed to so many other things, like blood

> > pressure

> > medications, as just one example, the even slight depression that

> > comes

> > from

> > having a chronic illness, or, simply not eating enough protein and

> > energy

> > foods, , etc. A lot of people just instinctively cut back on food

> when

> > they

> > have chronic renal failure, even relatively moderate renal failure.

> > That

> > can

> > definitely make you feel sluggish and tired.

> >

> > Good activity followed by good sleep is probably the best way to

> fight

> > fatigue.

> >

> > ...just some things to think about.

> >

> > Pierre

> >

> >

> >

> >

> >

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Guest guest

Hi Frances

How true is your message, invisible illness, I think I covered my

thoughts on this earlier in the week, so wont bang on about it again. I

know what you mean about fraud, if I didn't have other health issues, I

would also feel this way, but Frances honestly you are no fraud, you

know what you have got, and that is all that matters, I get fed up I

must admit having to justify myself sometimes. I am very sorry to hear

of your cancer scare, you must have been out of your mind, I know I was

last year, I was bloodtested for that for bone cancer, had to wait an

agonising 5 days for the result, I was a wreck, thankfully it was

negative. I am pleased that your IGAN is giving you no symptoms, and I

bet there are others that can say the same in the group too, but I have

to confess not to have heard from any up to now, so you could be a first

symptomless IGANer!!!! Do you like my English, so correct NOT!!!

LOL President Blair, spot on description, sorry if your supporters, but

that is one smarmy you know what. But I agree with you Frances,

you should check this out as Frances suggests, you have nothing to lose,

only to gain, a job hopefully.

Frances I hope you do get to train as a nurse if you wanted too, such a

worthwhile job, and I for one would be very proud of you.

Take care

Re: Fatigue

,

Don't know if it helps, but I had considered training to become a nurse.

Last week I phoned up the occupational therapist connected with

Canterbury

Christchurch University to see whether my health problems would be a bar

to

getting accepted on their nursing course and they said most definitely

not.

I think I recently posted that in addition to my IGA I have had a cancer

scare and am now on a 12 weekly check up for life. Christchurch were

made

aware of both of these health problems. I must admit I do sometimes feel

a

bit of a fraud on this site as I am on no medication whatsoever for my

IGA,

suffer no tiredness despite running round after 2 young children, and as

far

as my IGA is concerned, it is like an invisible illness. Apart from 6

monthly checks, I would not know anything was wrong.

What with President Blair (Whoops), meant to say Tony Blair's political

correctness, equal opportunities, race relations, sex equality and every

other thing he's big on, I can't see how, if you want to work, you are

being

denied the chance to work - but who am I to know!

Have you tried Citizens Advice Bureau or even tried asking your Kidney

Specialist's opinion on whether he feels you can work. I'm sure if he's

in

agreement that you are fit for work, any Company that refuses you an

interview is on very dodgy ground.

Good luck,

Frances

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Guest guest

Ive been through the disability Act and anything similar and theres nowt

there! In anycase lets face it two people go for a job ,same qualifications

one has kidley disease one has a clear record who would you choose? There is

no protection, we have an invisible disease and they have invisible

discrimination!

Nobody loves me , everybody hates me I'm going down the garden to eat

worms!! (except that looking out of my window I can see the hedgehog's got

there first!!) ;)

Re: Fatigue

>

> ,

>

> Don't know if it helps, but I had considered training to become a nurse.

>

> Last week I phoned up the occupational therapist connected with

> Canterbury

> Christchurch University to see whether my health problems would be a bar

> to

> getting accepted on their nursing course and they said most definitely

> not.

> I think I recently posted that in addition to my IGA I have had a cancer

>

> scare and am now on a 12 weekly check up for life. Christchurch were

> made

> aware of both of these health problems. I must admit I do sometimes feel

> a

> bit of a fraud on this site as I am on no medication whatsoever for my

> IGA,

> suffer no tiredness despite running round after 2 young children, and as

> far

> as my IGA is concerned, it is like an invisible illness. Apart from 6

> monthly checks, I would not know anything was wrong.

>

> What with President Blair (Whoops), meant to say Tony Blair's political

> correctness, equal opportunities, race relations, sex equality and every

>

> other thing he's big on, I can't see how, if you want to work, you are

> being

> denied the chance to work - but who am I to know!

>

> Have you tried Citizens Advice Bureau or even tried asking your Kidney

> Specialist's opinion on whether he feels you can work. I'm sure if he's

> in

> agreement that you are fit for work, any Company that refuses you an

> interview is on very dodgy ground.

>

> Good luck,

>

>

> Frances

>

>

>

>

>

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Guest guest

I was lucky - no one asked so I didn't mention it.

From: Tudortrinity@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: Fatigue

Date: Thu, 30 May 2002 16:13:54 EDT

,

Don't know if it helps, but I had considered training to become a nurse.

Last week I phoned up the occupational therapist connected with Canterbury

Christchurch University to see whether my health problems would be a bar to

getting accepted on their nursing course and they said most definitely not.

I think I recently posted that in addition to my IGA I have had a cancer

scare and am now on a 12 weekly check up for life. Christchurch were made

aware of both of these health problems. I must admit I do sometimes feel a

bit of a fraud on this site as I am on no medication whatsoever for my IGA,

suffer no tiredness despite running round after 2 young children, and as far

as my IGA is concerned, it is like an invisible illness. Apart from 6

monthly checks, I would not know anything was wrong.

What with President Blair (Whoops), meant to say Tony Blair's political

correctness, equal opportunities, race relations, sex equality and every

other thing he's big on, I can't see how, if you want to work, you are being

denied the chance to work - but who am I to know!

Have you tried Citizens Advice Bureau or even tried asking your Kidney

Specialist's opinion on whether he feels you can work. I'm sure if he's in

agreement that you are fit for work, any Company that refuses you an

interview is on very dodgy ground.

Good luck,

Frances

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Guest guest

Actually, I think the question was did I have a medial condition that might

affect my ABILITY to do the job...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: Fatigue

Date: Fri, 31 May 2002 09:25:25 +1000

I was lucky - no one asked so I didn't mention it.

From: Tudortrinity@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: Fatigue

Date: Thu, 30 May 2002 16:13:54 EDT

,

Don't know if it helps, but I had considered training to become a nurse.

Last week I phoned up the occupational therapist connected with Canterbury

Christchurch University to see whether my health problems would be a bar to

getting accepted on their nursing course and they said most definitely not.

I think I recently posted that in addition to my IGA I have had a cancer

scare and am now on a 12 weekly check up for life. Christchurch were made

aware of both of these health problems. I must admit I do sometimes feel a

bit of a fraud on this site as I am on no medication whatsoever for my IGA,

suffer no tiredness despite running round after 2 young children, and as far

as my IGA is concerned, it is like an invisible illness. Apart from 6

monthly checks, I would not know anything was wrong.

What with President Blair (Whoops), meant to say Tony Blair's political

correctness, equal opportunities, race relations, sex equality and every

other thing he's big on, I can't see how, if you want to work, you are being

denied the chance to work - but who am I to know!

Have you tried Citizens Advice Bureau or even tried asking your Kidney

Specialist's opinion on whether he feels you can work. I'm sure if he's in

agreement that you are fit for work, any Company that refuses you an

interview is on very dodgy ground.

Good luck,

Frances

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

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Guest guest

Re: Fatigue

(snipped)

> I must admit I do sometimes feel a

> bit of a fraud on this site as I am on no medication whatsoever for my

IGA,

> suffer no tiredness despite running round after 2 young children, and as

far

> as my IGA is concerned, it is like an invisible illness. Apart from 6

> monthly checks, I would not know anything was wrong.

>

(snipped)>

>

> Frances

>

Don't worry about that Frances. You're not a fraud! I myself wasn't on any

medication whatsoever from 1977 until they started treating me for the high

blood pressure in the early 90's. There just wasn't any need for it.

Pierre

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Guest guest

Re: Fatigue

> Actually, I think the question was did I have a medial condition that

might

> affect my ABILITY to do the job...

>

>

This would be illegal in Canada.

Pierre

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Guest guest

Well, IgAn doesn't affect my ability in the same way as say extreme near

sightedness does. And I have flexible working hours which makes it easy for

me to take a few hours off for appointments rather than sick days. Or do

you mean the question? I think the thrust of the question was for special

needs such as wheelchair access.

Reply-To: iga-nephropathy

To: <iga-nephropathy >

Subject: Re: Fatigue

Date: Thu, 30 May 2002 20:27:40 -0400

Re: Fatigue

> Actually, I think the question was did I have a medial condition that

might

> affect my ABILITY to do the job...

>

>

This would be illegal in Canada.

Pierre

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Guest guest

All I will say on this family-oriented group is that I might need the

magnifying glass for the meat on my plate, not for anything else!

Pierre

Re: Re: Fatigue

> >

> >

> > > I agree with you there. A friend of mine who is a nurse

explained to

> me

> > > that when the body mobilises to fight infection it takes energy

from

> > where

> > > ever it can get it. She also said that when you are spilling

protein,

> in

> > a

> > > sense you are peeing away your energy. Though I have to say that

the

> > > medication doesn't help either!

> > >

> > >

> >

> >

> >

> >

> > _________________________________________________________________

> > Join the world's largest e-mail service with MSN Hotmail.

> > http://www.hotmail.com

> >

> >

> >

> >

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Guest guest

lol

Re: Re: Fatigue

> > >

> > >

> > > > I agree with you there. A friend of mine who is a nurse

> explained to

> > me

> > > > that when the body mobilises to fight infection it takes energy

> from

> > > where

> > > > ever it can get it. She also said that when you are spilling

> protein,

> > in

> > > a

> > > > sense you are peeing away your energy. Though I have to say

that

> the

> > > > medication doesn't help either!

> > > >

> > > >

> > >

> > >

> > >

> > >

> > > _________________________________________________________________

> > > Join the world's largest e-mail service with MSN Hotmail.

> > > http://www.hotmail.com

> > >

> > >

> > >

> > >

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Guest guest

ROTFL

Marty

Re: Re: Fatigue

> > >

> > >

> > > > I agree with you there. A friend of mine who is a nurse

> explained to

> > me

> > > > that when the body mobilises to fight infection it takes energy

> from

> > > where

> > > > ever it can get it. She also said that when you are spilling

> protein,

> > in

> > > a

> > > > sense you are peeing away your energy. Though I have to say

that

> the

> > > > medication doesn't help either!

> > > >

> > > >

> > >

> > >

> > >

> > >

> > > _________________________________________________________________

> > > Join the world's largest e-mail service with MSN Hotmail.

> > > http://www.hotmail.com

> > >

> > >

> > >

> > >

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  • 2 years later...

Why am I so blasted tired? I had plenty of sleep an hour or two up and I'm ready for bed. I just made an appointment with the doctor to see if something can be done about it. This just started a week ago so I don't think it is my meds. I imagine it has something to do with how much I weigh. Everyone I've talked to about stomach stapling says its just as hard losing weight as a regular diet, except for the first month or two. I tried to read the other day instead of playing games on the computer to have something different to do and I fell alsleep. The same thing is happening now. I can hardly see what I'm typing....by eyes are dim...I cannot see. I hate to complain so much and I'm sorry. I get so lonely at times. My husband falls asleep in front of the television every night so I can't talk to him. Thats not exactly true he is always open to hear me even when I wake him up. I hope things improve pretty soon. thanks for listening ( if you did).

Norma

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Norma: Sweetie, You also have FMS. which makes us all tired.. totally exhausted. But I am very glad you called the Doctor. maybe he kind find out what's wrong. I know weight can have a lot to do with thing's. but I think you are obsessing about the weight.. It will be a lot easier to loose the weight.. IF you really put your mind to it.. I know easier said than done.. If you need help a buddy you know to help you stay on track I am here and I will help you all I can.. If you are tired Sleep.. never fight sleep... I will take some of that exhaustion.or sleep I could really use the sleep.. Love you Norma.. Gentle Caring Hug's Marie Marie A. Roomsburg pretty_n_cute2002@... marieava@...

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