Re: No appetite - who else?

[Guest guest]

I had that. Chinese medicine (not sure what kind) my doctor prescribed

helped me get that back. (Still haven't got my sex drive back

though.)

> Hi,

>

> Ever since cfids came into my life, I have had no appetite whatsoever.

> Even when my stomach has been empty for 12 hours, I have no feeling of

> hunger. Can anyone relate to this? What causes this lack of appetite?

>

> Katrien

[Guest guest]

Only a guess...would it be autonomic malfunction?

I do get hungry, and do eat. But often go hours and hours after awakening...

with no actual hunger feeling.

Katrina

> Hi,

>

> Ever since cfids came into my life, I have had no appetite whatsoever.

> Even when my stomach has been empty for 12 hours, I have no feeling of

> hunger. Can anyone relate to this? What causes this lack of appetite?

>

> Katrien

[Guest guest]

> Hi,

>

> Ever since cfids came into my life, I have had no appetite

whatsoever.

> Even when my stomach has been empty for 12 hours, I have no feeling

of

> hunger. Can anyone relate to this? What causes this lack of appetite?

>

> Katrien

Hi Katrien

I have exactly the same symptom and it started in 2000 when I

developed CFS. However because I became aware of my blood sugar

dropping very regularly and causing me to feel bad I do eat very

regularly whether I am hungry or not. Cannot remember feeling really

hungry for 5 years but before getting sick I was always getting hungry.

Pam

[Guest guest]

Same here. I eat three meals a day like I used to before I became ill,

but there is never a bodily urge to eat (though I do get food

cravings -without experiencing hunger).

It is the hypothalamus which regulates the sensations of hunger, right?

Could it be that dysfunction of the hypothalamus in cfids causes our

appetite loss?

Katrien

> > Hi,

> >

> > Ever since cfids came into my life, I have had no appetite

> whatsoever.

> > Even when my stomach has been empty for 12 hours, I have no feeling

> of

> > hunger. Can anyone relate to this? What causes this lack of appetite?

> >

> > Katrien

>

> Hi Katrien

>

> I have exactly the same symptom and it started in 2000 when I

> developed CFS. However because I became aware of my blood sugar

> dropping very regularly and causing me to feel bad I do eat very

> regularly whether I am hungry or not. Cannot remember feeling really

> hungry for 5 years but before getting sick I was always getting hungry.

>

> Pam

[Guest guest]

I'm the opposite - always looking for the next thing to eat.. btw, I'm

one of the skinny pwc's.

Rosie

Subject: Re: No appetite - who else?

Same here. I eat three meals a day like I used to before I became ill,

but there is never a bodily urge to eat (though I do get food

cravings -without experiencing hunger).

It is the hypothalamus which regulates the sensations of hunger, right?

Could it be that dysfunction of the hypothalamus in cfids causes our

appetite loss?

Katrien

> > Hi,

> >

> > Ever since cfids came into my life, I have had no appetite

> whatsoever.

> > Even when my stomach has been empty for 12 hours, I have no feeling

> of

> > hunger. Can anyone relate to this? What causes this lack of

appetite?

> >

> > Katrien

>

> Hi Katrien

>

> I have exactly the same symptom and it started in 2000 when I

> developed CFS. However because I became aware of my blood sugar

> dropping very regularly and causing me to feel bad I do eat very

> regularly whether I am hungry or not. Cannot remember feeling really

> hungry for 5 years but before getting sick I was always getting

hungry.

>

> Pam

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

[Guest guest]

I did not have this problem for the first 10 years of my illness. I started

having it since 2000 and I know what you mean. It is terrible to live

without any apatite.I also got very thin.

I have a feeling that this is my body's signal telling me that it can not

absorb nutrients even if I eat and it does not want any more material that

it can not make use of. . Do you have absorption problems? Problems with

protein digestion?I started taking betaine hcl some time ago and it helps.

If I take 2 betaine hcl capsules(may be I need more but haven't tried that)

and 1 pancreatin plus ox bile tablet than I have some apatite next meal.

That means to me that my problem is related with low hcl production and not

to hypothalamus mulfunction.

So,if the things I told relate to you you may also wish to experiment with

betaine hcl (and if possible with pancreatic enzymes plus ox bile) and see

if condition will improve.

I have terribly hurt my back just couple of hours ago. I don't know what

will happen as time passes. I can hardly stand up now. So,please be informed

that I may not be able to answer my mails for a while.

Thanks

nil

No appetite - who else?

> Hi,

>

> Ever since cfids came into my life, I have had no appetite whatsoever.

> Even when my stomach has been empty for 12 hours, I have no feeling of

> hunger. Can anyone relate to this? What causes this lack of appetite?

>

> Katrien

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

> other, not to give medical advice. If you are interested in any treatment

> discussed here, please consult your doctor.

>

[Guest guest]

I don't have the answers to your hypothalamus questions, but

just wanted to add my two cents.

I'm in the same boat. Not much appetite, and when I do eat, it

takes me twice as long as others. I don't " chow down " on

whatever like everyone else seems to.

Why? Could be a hypothalamus issue, I don't know. But it could

also be very low stomach acid (remedied by HCL caps, or also

B-1 and manganese), it could be a bacterial imbalance (possibly

remedied by high-dose decent probiotics) and/or it could be a

candida/fungal or parasite issue. As discussed yesterday

parasites are extremely common, and overlooked in 80-90

percent of cases.

Also -- I think Dr. Cheney mentioned that his appetite kicked in

big time about a year after his heart transplant -- indicating I think

that it could be a hyperocoagulation (or poor microcirculation)

issue.

Very frustrating though. I'm 20 lbs underweight -- people say I

eat " a lot " , but I really have to work hard to gain a 1/2 pound in a

month's time...

Dan

> > > Hi,

> > >

> > > Ever since cfids came into my life, I have had no appetite

> > whatsoever.

> > > Even when my stomach has been empty for 12 hours, I

have no feeling

> > of

> > > hunger. Can anyone relate to this? What causes this lack

of appetite?

> > >

> > > Katrien

> >

> > Hi Katrien

> >

> > I have exactly the same symptom and it started in 2000 when

I

> > developed CFS. However because I became aware of my

blood sugar

> > dropping very regularly and causing me to feel bad I do eat

very

> > regularly whether I am hungry or not. Cannot remember

feeling really

> > hungry for 5 years but before getting sick I was always getting

hungry.

> >

> > Pam

[Guest guest]

Forgot to mention that B-12 is supposed to help one's appetite

kick in, and some have found it to be the only thing that worked

after trying everything else.

That said, I also use HCL caps, and back in 2000, I had to take

NINE of them to get any feeling of warmth in my stomach. I've

been taking 2 or three lately, but perhaps need to go up one.

The key is the warm feeling -- if you get that, you're supposedly

taking too much.

Hope your back is better Nil!

d.

> I did not have this problem for the first 10 years of my illness. I

started

> having it since 2000 and I know what you mean. It is terrible to

live

> without any apatite.I also got very thin.

> I have a feeling that this is my body's signal telling me that it

can not

> absorb nutrients even if I eat and it does not want any more

material that

> it can not make use of. . Do you have absorption problems?

Problems with

> protein digestion?I started taking betaine hcl some time ago

and it helps.

> If I take 2 betaine hcl capsules(may be I need more but haven't

tried that)

> and 1 pancreatin plus ox bile tablet than I have some apatite

next meal.

> That means to me that my problem is related with low hcl

production and not

> to hypothalamus mulfunction.

> So,if the things I told relate to you you may also wish to

experiment with

> betaine hcl (and if possible with pancreatic enzymes plus ox

bile) and see

> if condition will improve.

>

> I have terribly hurt my back just couple of hours ago. I don't

know what

> will happen as time passes. I can hardly stand up now.

So,please be informed

> that I may not be able to answer my mails for a while.

>

> Thanks

> nil

> No appetite - who else?

>

>

> > Hi,

> >

> > Ever since cfids came into my life, I have had no appetite

whatsoever.

> > Even when my stomach has been empty for 12 hours, I have

no feeling of

> > hunger. Can anyone relate to this? What causes this lack of

appetite?

> >

> > Katrien

> >

> >

> >

> >

> >

> > This list is intended for patients to share personal

experiences with each

> > other, not to give medical advice. If you are interested in any

treatment

> > discussed here, please consult your doctor.

> >

[Guest guest]

" Doyon " <prd34@y...> wrote:

> I had that. Chinese medicine (not sure what kind) my doctor

prescribed

> helped me get that back. (Still haven't got my sex drive back

> though.)

Hi ,

I'm not the expert, but I've read that in chinese and also ayurvedic

theory that one's sex drive " takes a vacation " as a way to

conserve energy. I have that too most of the time -- makes

sense to me when you think of all the work the body has to do to

produce new sperm, etc.. How can it do that properly and work

on repairing and restoring proper immune function so it can

battle the bugs we might be dealing with?

Frustrating though isn't it!

Dan

>

>

> > Hi,

> >

> > Ever since cfids came into my life, I have had no appetite

whatsoever.

> > Even when my stomach has been empty for 12 hours, I have

no feeling of

> > hunger. Can anyone relate to this? What causes this lack of

appetite?

> >

> > Katrien

[Guest guest]

When I was a youngster and kids were supposed to be a bit chubby, and moms

worried if theirs was not, the remedy was malt. Not in beer, in malted milks. We

never had that problem in my family, so I don't know from experience.

Adrienne

Re: No appetite - who else?

I don't have the answers to your hypothalamus questions, but

just wanted to add my two cents.

I'm in the same boat. Not much appetite, and when I do eat, it

takes me twice as long as others. I don't " chow down " on

whatever like everyone else seems to.

Why? Could be a hypothalamus issue, I don't know. But it could

also be very low stomach acid (remedied by HCL caps, or also

B-1 and manganese), it could be a bacterial imbalance (possibly

remedied by high-dose decent probiotics) and/or it could be a

candida/fungal or parasite issue. As discussed yesterday

parasites are extremely common, and overlooked in 80-90

percent of cases.

Also -- I think Dr. Cheney mentioned that his appetite kicked in

big time about a year after his heart transplant -- indicating I think

that it could be a hyperocoagulation (or poor microcirculation)

issue.

Very frustrating though. I'm 20 lbs underweight -- people say I

eat " a lot " , but I really have to work hard to gain a 1/2 pound in a

month's time...

Dan

> > > Hi,

> > >

> > > Ever since cfids came into my life, I have had no appetite

> > whatsoever.

> > > Even when my stomach has been empty for 12 hours, I

have no feeling

> > of

> > > hunger. Can anyone relate to this? What causes this lack

of appetite?

> > >

> > > Katrien

> >

> > Hi Katrien

> >

> > I have exactly the same symptom and it started in 2000 when

I

> > developed CFS. However because I became aware of my

blood sugar

> > dropping very regularly and causing me to feel bad I do eat

very

> > regularly whether I am hungry or not. Cannot remember

feeling really

> > hungry for 5 years but before getting sick I was always getting

hungry.

> >

> > Pam

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

[Guest guest]

Nil,

Yes, I have digestive problems (bloating, fullness, slow gastric

emptying, and a belly that likes to make funny noises). I take

Domperidon tablets almost every day to help my stomach in its work...

Luckily, I haven't lost too much weight -like you- nor am I

overweight. I have the impression that it's mostly carbohydrates that

are causing me problems. But milk (or cream) gives me symptoms too.

Will try digestive enzymes and possibly also betaine hydrochloride.

Thank you for the tip. I would love to be able to feel hungry again.

I wish you a speedy recovery with your back problems!

Katrien

> I did not have this problem for the first 10 years of my illness. I

started

> having it since 2000 and I know what you mean. It is terrible to live

> without any apatite.I also got very thin.

> I have a feeling that this is my body's signal telling me that it

can not

> absorb nutrients even if I eat and it does not want any more

material that

> it can not make use of. . Do you have absorption problems? Problems with

> protein digestion?I started taking betaine hcl some time ago and it

helps.

> If I take 2 betaine hcl capsules(may be I need more but haven't

tried that)

> and 1 pancreatin plus ox bile tablet than I have some apatite next meal.

> That means to me that my problem is related with low hcl production

and not

> to hypothalamus mulfunction.

> So,if the things I told relate to you you may also wish to

experiment with

> betaine hcl (and if possible with pancreatic enzymes plus ox bile)

and see

> if condition will improve.

>

> I have terribly hurt my back just couple of hours ago. I don't know what

> will happen as time passes. I can hardly stand up now. So,please be

informed

> that I may not be able to answer my mails for a while.

>

> Thanks

> nil

> No appetite - who else?

>

>

> > Hi,

> >

> > Ever since cfids came into my life, I have had no appetite whatsoever.

> > Even when my stomach has been empty for 12 hours, I have no feeling of

> > hunger. Can anyone relate to this? What causes this lack of appetite?

> >

> > Katrien

> >

> >

> >

> >

> >

> > This list is intended for patients to share personal experiences

with each

> > other, not to give medical advice. If you are interested in any

treatment

> > discussed here, please consult your doctor.

> >

[Guest guest]

Katrien and Katrina...I have problems with appetite too. I don't get

hungry until about 4 in the afternoon. But I also go through periods

of being hungry all the time. I was thin until two years ago when I had

a hysterectomy. Then I rapidly gained 60 pounds!

Blood sugar can affect appetite. I also remember reading that the

neurotransmitter acetylcholine is involved in appetite. Acetylcholine is

also involved in memory (Alzheimer's) and muscle functioning.

Interestingly, some of the things that affect acetylcholine functioning

are:

(1) mercury

(Wikepedia internet encyclopedia)

http://en.wikipedia.org/wiki/Acetylcholine

(2) ciguatera toxin and other marine and fresh water toxins (anatoxins

and saxitoxin)

(3) pesticides and

(4) nerve gas agents and pyridostigmine (involved in gulf war illness).

Hopefully, people with CFS will eventually benefit from research on

Alzheimer's, bio-toxins, and autism.

Vickie

On Fri, 29 Jul 2005 10:31:12 -0000 " kattemayo " <kattemayo@...>

writes:

Only a guess...would it be autonomic malfunction?

I do get hungry, and do eat. But often go hours and hours after

awakening... with no actual hunger feeling.

Katrina

[Guest guest]

I appreciated Nil's idea about this - that the body isn't able to

process the food anyway, so doesn't ask for what it can't use.

I had no appetite the first 4 years or so of this illness. I was

quite overweight, very brain fogged, mostly bedbound a couple of

those years so eating *very* little (most days just a protein bar or

glass or 2 of milk). Three years in a row, I went up one pound

(measured at my annual checkup) and down one dress size. Weird.

I also went through several months of the stomach distress someone

mentioned, afraid even to swallow water because of the increased

pain. It was H.Pylori, which got treated. Eventually the pain ended,

I started the HCl and enzymes, and my appetite returned. I lost 30

lbs that year.

Until this thread, I never connected the fact that my appetite

returned at the same time I started taking betaine HCl. I also take

enzymes (V-Zyme from Pharmax currently). Pancreatin didn't agree with

me when I tried it a few years ago. Maybe it'd work now - I haven't

tried again.

I'm still overweight though I eat fairly lightly. I'm one of the big

ones.

Take care. -Lynn

[Guest guest]

I am surprised that there aren't more skinny PWCs like myself due

to lack of motility in the digestive system. I lose my appetite

after I eat and the food just seems to sit there in my stomach

and/or intestines. This has been going on since I first got CFS,

and I try to eat easily digestable foods now like fruits and

vegetagles and veg juice. However I do eat some fish/chicken.

Mike C.

> I appreciated Nil's idea about this - that the body isn't able to

> process the food anyway, so doesn't ask for what it can't use.

>

> I had no appetite the first 4 years or so of this illness. I was

> quite overweight, very brain fogged, mostly bedbound a couple of

> those years so eating *very* little (most days just a protein bar

or

> glass or 2 of milk). Three years in a row, I went up one pound

> (measured at my annual checkup) and down one dress size. Weird.

>

> I also went through several months of the stomach distress someone

> mentioned, afraid even to swallow water because of the increased

> pain. It was H.Pylori, which got treated. Eventually the pain

ended,

> I started the HCl and enzymes, and my appetite returned. I lost 30

> lbs that year.

>

> Until this thread, I never connected the fact that my appetite

> returned at the same time I started taking betaine HCl. I also

take

> enzymes (V-Zyme from Pharmax currently). Pancreatin didn't agree

with

> me when I tried it a few years ago. Maybe it'd work now - I

haven't

> tried again.

>

> I'm still overweight though I eat fairly lightly. I'm one of the

big

> ones.

>

> Take care. -Lynn

[Guest guest]

I do know from experience. I was very thin, and our local doctor presribed

eating a full regular meal and then drinking a large malted milk. All it

really did was make me hate malted milk for life. I don't think it made me

gain any weight.

Re: No appetite - who else?

>

>

> I don't have the answers to your hypothalamus questions, but

> just wanted to add my two cents.

>

> I'm in the same boat. Not much appetite, and when I do eat, it

> takes me twice as long as others. I don't " chow down " on

> whatever like everyone else seems to.

>

> Why? Could be a hypothalamus issue, I don't know. But it could

> also be very low stomach acid (remedied by HCL caps, or also

> B-1 and manganese), it could be a bacterial imbalance (possibly

> remedied by high-dose decent probiotics) and/or it could be a

> candida/fungal or parasite issue. As discussed yesterday

> parasites are extremely common, and overlooked in 80-90

> percent of cases.

>

> Also -- I think Dr. Cheney mentioned that his appetite kicked in

> big time about a year after his heart transplant -- indicating I think

> that it could be a hyperocoagulation (or poor microcirculation)

> issue.

>

> Very frustrating though. I'm 20 lbs underweight -- people say I

> eat " a lot " , but I really have to work hard to gain a 1/2 pound in a

> month's time...

>

> Dan

>

>

>

>

> > > > Hi,

> > > >

> > > > Ever since cfids came into my life, I have had no appetite

> > > whatsoever.

> > > > Even when my stomach has been empty for 12 hours, I

> have no feeling

> > > of

> > > > hunger. Can anyone relate to this? What causes this lack

> of appetite?

> > > >

> > > > Katrien

> > >

> > > Hi Katrien

> > >

> > > I have exactly the same symptom and it started in 2000 when

> I

> > > developed CFS. However because I became aware of my

> blood sugar

> > > dropping very regularly and causing me to feel bad I do eat

> very

> > > regularly whether I am hungry or not. Cannot remember

> feeling really

> > > hungry for 5 years but before getting sick I was always getting

> hungry.

> > >

> > > Pam

>

>

>

>

> This list is intended for patients to share personal experiences with

> each other, not to give medical advice. If you are interested in any

> treatment discussed here, please consult your doctor.

>

>

>

>

[Guest guest]

" I don't get

hungry until about 4 in the afternoon. "

Me,too..

Nil

[Guest guest]

Thanks for the info regarding acetylcholine. I will be starting a

mercury-detox program in two months, after my fillings have been

replaced. Maybe then my appetite will magically reappear.

Katrien

> Katrien and Katrina...I have problems with appetite too. I don't get

> hungry until about 4 in the afternoon. But I also go through periods

> of being hungry all the time. I was thin until two years ago when I had

> a hysterectomy. Then I rapidly gained 60 pounds!

>

> Blood sugar can affect appetite. I also remember reading that the

> neurotransmitter acetylcholine is involved in appetite.

Acetylcholine is

> also involved in memory (Alzheimer's) and muscle functioning.

> Interestingly, some of the things that affect acetylcholine functioning

> are:

>

> (1) mercury

>

> (Wikepedia internet encyclopedia)

> http://en.wikipedia.org/wiki/Acetylcholine

>

> (2) ciguatera toxin and other marine and fresh water toxins (anatoxins

> and saxitoxin)

>

> (3) pesticides and

>

> (4) nerve gas agents and pyridostigmine (involved in gulf war

illness).

>

> Hopefully, people with CFS will eventually benefit from research on

> Alzheimer's, bio-toxins, and autism.

>

> Vickie

>

> On Fri, 29 Jul 2005 10:31:12 -0000 " kattemayo " <kattemayo@y...>

> writes:

> Only a guess...would it be autonomic malfunction?

>

> I do get hungry, and do eat. But often go hours and hours after

> awakening... with no actual hunger feeling.

>

>

> Katrina

>

>

[Guest guest]

On Sat, 30 Jul 2005 00:57:47 -0000 " yakcamp22 " <yakcamp22@...>

writes:

I am surprised that there aren't more skinny PWCs like myself due

to lack of motility in the digestive system. I lose my appetite

after I eat and the food just seems to sit there in my stomach

and/or intestines.

******

Mike,

I was a skinny PWC until recent years. I think I have the stomach and

intestine motility problem you are referring to. But now it has gotten

so bad, that I get low blood sugar attacks, and I compensate by eating

high calorie foods or bingeing.

Does anybody know how to increase gastrointestinal motility? I think the

digestive enzymes and HCL help and also peppermint. But they don't help

enough. Maybe I am not taking enough of them.

Vickie

[Guest guest]

I don't see how digestive enzymes, etc are going to get waste flowing through

your bowels. Are you taking a lot of fiber? Metamucil? Super high fiber

cereal?

Doris

[Guest guest]

I used to have the motility problem too altho I felt starving all the time and

gaining weight. I think magnesium probably helped more than anything to keep

things 'flowing', since its good for the muscles and somewhat laxative. (in some

forms) When I tried to take the fibers I would just bloat up and still nothing

would move so would feel a lot of abdominal pressure and pain. I think

potassium helped me with bowel regularity too. I haven't had the severe problem

I used to have for many years now (thankfully!) and I think its because my

mineral levels are up where they should be. Oh, I did try all the digestive

enzyme stuff, all different kinds and don't remember that helping the problem,

so would agree with Doris on that.

Marcia

Re: Re: No appetite - who else?

I don't see how digestive enzymes, etc are going to get waste flowing through

your bowels. Are you taking a lot of fiber? Metamucil? Super high fiber

cereal?

Doris

[Guest guest]

As one of the skinny pwc's I have rather too high motility. ;-)

I don't know if this is any help to Vickie, but I've just started

re-arranging my diet a little, and taking one of those 'green' food

supplement things (the one I've got at the moment is Gillian Mcs

Living Superfood - don't know if it's available anywhere other than the

uk, but there are lots of them about) and surprise surprise I can

tolerate it! Interestingly though it does seem to stop me feeling quite

so in need of food all the time, perhaps that's as she herself suggests,

I'm actually managing to absorb some of the nutrients my body is

demanding but never receiving despite eating lots of good stuff, because

it usually isn't in an easily absorbable form for my rather knackered

intestines to cope with.

It does seem interesting that there are skinnies eating reasonable

amounts of food, and slightly more 'rounded' pwc's who are eating very

little!

Rosie

Subject: Re: Re: No appetite - who else?

On Sat, 30 Jul 2005 00:57:47 -0000 " yakcamp22 " <yakcamp22@...>

writes:

I am surprised that there aren't more skinny PWCs like myself due

to lack of motility in the digestive system. I lose my appetite

after I eat and the food just seems to sit there in my stomach

and/or intestines.

******

Mike,

I was a skinny PWC until recent years. I think I have the stomach and

intestine motility problem you are referring to. But now it has gotten

so bad, that I get low blood sugar attacks, and I compensate by eating

high calorie foods or bingeing.

Does anybody know how to increase gastrointestinal motility? I think

the

digestive enzymes and HCL help and also peppermint. But they don't help

enough. Maybe I am not taking enough of them.

Vickie

[Guest guest]

It does seem interesting that there are skinnies eating reasonable

amounts of food, and slightly more 'rounded' pwc's who are eating very

little!

Rosie

Rosie,

I know! Its sure frustrating for all of us, one way or the other :-/

Marcia

[Guest guest]

I've had experience of both. After an acute onset I lost a lot of

weight and muscle, I was so hungry I was eating half way through the

night as well. I had either diarrhea or fatty stools a lot of the time.

A chiro recommended a doctor who Dx candida, leaky gut, gluten

intolerance, lots of deficiencies etc; the protocol for those helped me

regain some of the wieght I'd lost. Others who are underweight and go

on a strict candida diet often complain they lose more weight but

fortunatley the opposite happened with me.

I remained slightly underweight no matter how much I ate until a few

years ago when I went the other way, that felt really weird. Further

changes in foods eaten and protocol led to losing half the recent

weight gain, my weight has remained stable for a year now.

Tansy

> It does seem interesting that there are skinnies eating reasonable

> amounts of food, and slightly more 'rounded' pwc's who are eating very

> little!

>

> Rosie

>

> Rosie,

>

> I know! Its sure frustrating for all of us, one way or the other :-/

>

> Marcia

>

>

>

[Guest guest]

Hi:

I have had just the opposite. Always want food, feel like nothing

satisfies hunger, and gained 100 lbs in first year of illness.

Teena

[Guest guest]

Oh Teena!

I'm so sorry to hear this. I've gained over 70lbs but it didn't start till about

7 yrs into my cfs (when the fm part started) and was slow and steady gain for

about 18 yrs. The last year I've been getting a few pounds off, but that usually

happens when I have to take antibiotics for something.

What strikes me as VERY strange is that doctors (esp cfs) and even researchers,

don't seem to give this issue the serious consideration it needs. This is a HUGE

symptom for both groups, the ones that can't gain weight and ones that can't

quit gaining. This also would tell us so much about different subgroups. To me

its such an important symptom, yet you are always made to feel like you are just

morally 'weak' because you can't control your weight gain, its not considered

much as a symptom. And I'm guessing those that can't gain probably are made to

feel that they just aren't eating (trying).

When I got my test results back on that ION profile from metametrix it showed

that I am not burning fats, I'm not burning carbs for energy but turning that

into fatty acids. There are blocks in the krebs cycle and I dont' have a lot of

the amino's I need, on and on. So, if Drs wanted to know why we gain, its there

to be found.

Now changing it is not going to be easy, if I ever can! But I think this is one

of those symptoms too that few others but cfs patients can understand how hard

we struggle with, making ourselves try and eat more/less and try to gain/lose

just to find any kind of balance and still find it out of reach :-( I know my

family (who doesn't bother talking to me anymore) has always thought I'm 'just'

fat, lazy and depressed. Even tho when healthy I was thin and outworked them

all. Ok, 'that' is depressing but its sure not the root of my illness.

Good luck Teena!

Marcia

Re: No appetite - who else?

Hi:

I have had just the opposite. Always want food, feel like nothing

satisfies hunger, and gained 100 lbs in first year of illness.

Teena

This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.