fatigue

[Guest guest]

Take cortisol for adrenals and make sure you are getting enough Armour to

feel well, don't treat to the TSH.

Gracia

>

>

>

> Hello Group,

> My name is and I have been hypothyroid for almost 3 years.

> I am also a laryngectomee. After 17 months on Synthroid and never

> feeling better I was switched to Armour Thyroid and now I feel much

> better. I am unable to drop any weight and I always feel tired and

> fatigued. I WAS an avid weight lifter and am a black belt in judo and

> practiced several times a week, but now I'm too tired to do anything

> at all. Any suggestions?

>

>

>

>

>

>

>

>

>

>

[Guest guest]

One wonderful thing about immunics is how people start doing it when you

show them, without any explanation.

At 11:32 AM 2/2/2005, you wrote:

>Hello, I am completely new at this.

> I have been seeking and searching. I keep thinking that I have

> found and believe enough information (spiritually) that I should not

> have this constant issue. It is a desire to sleep, almost always. With

> this goes body fatigue and some aches and pains. It has been going on a

> long, long time. It cycles and sometimes is worse than others. I am an

> RN so I have read everything possible. I have tried traditional

> medicine, kinesiology, energy healing, acupuncture, herbs etc. No real

> relief. They have been interesting and valuable experiences...but it has

> not changed this physical body that is dragging me down so.

>

> I do feel as if I am making spiritual progress, and have been in

> transition with some of my old standard beliefs, I take this as a good

> sign. I try to be open and prayerful. I have tried to use a pendulum and

> usually it hangs dead still..this worries me...as if I am not connected

> to something. I tried the " hand " thing to connect to my higher self,

> nothing. Help.

>

>If I was supposed to email this to someone else, please forward it. Thank

>you. I am trying to suppress my excitement over receiving information from

>immunics, since I felt several times before that I had found help. Since I

>am living here during this life I would like to feel the necessary energy

>to participate more fully, instead of blunted, tired, fuzzy brained

>experience. I leave town tomorrow morning taking a group of high school

>students on a field trip until Saturday night.

>Thanks, Kristi Helow

[Guest guest]

,

developed the Fatigue not long after being diagnosed. It has it's

ups and downs. tries to manage herself. If we plan a trip to six flags

has to rest at least 2 full days before we go and she does fair. But

when we get home shes out of it for 2 days. It also messed up her sleep also.

She may stay up for 24 hours then sleep 12 hours. The body makes you rest when

you dont want to. The fatigue is a major thing here also.

Robbin

[Guest guest]

Rusty,

The docotr tells to keep up the exercises this will give her

energy lololol.

Sometimes this works sometimes it makes it worse. But she will try anything

once.

I try to make sure her iron level stays up.

Robbin

[Guest guest]

, We have found the fatigue is a big problem of the disease.

There are times that n has been near normal during the last six years,

but if she overdoes-she pays for it. She has not had the energy her 14 year

old sister has since diagnosis. The fatigue is worse when the disease is

most active. (n, 16, systemic)

Fatigue

>

>

> Can anyone comment on the fatigue factor with JRA, specifically

> systemic kids? Fatigue has been a huge factor with my son from the

> start. He has had periods where it's better but he has never

> returned to his normal pre-diagnosis stamina by any means. Last

> night, he was " out of it " as he describes, and his leg was really

> bothering him. He was coming down the stairs and his leg gave out and

> he fell down the entire flight of stairs. He is fine, but the leg

> was still bothering him this morning and he looked extremly

> fatigued. He stayed home and this afternoon he told me that there

> was NO way he could have gone to school....that he was sooo tired.

> Any input will be much appreciated.

>

> Thanks to all

> ( 13, systemic)

>

>

>

>

>

>

>

>

[Guest guest]

,

I don't know what else to say but yes there is life after fatigue.I can not

tell you how to get there but it's just a perfect,right combo of meds.It is

possible,feasable and something to look forward to.

Things may be much better but are they perfect?

Hugs

Becki and 6systemic

[Guest guest]

Rusty,

Thanks for your reply. From what I hear you saying, it doesn't sound

like there is any way to improve the fatigue. Do you know, or anyone

else, if a change of medicine can help improve the fatigue? My

understanding of this disease was that once the correct mix of drugs

are found, the child would be just about " back to normal " with only

an occasional flare and that after activity the child might be more

tired but would recover quickly. This has not been our experience

thus far. There is no way Christian could go back to playing

football or doing the activities of pre-diagnosis. Do I need to

readjust my expectations or should I be advocating for a possible

treatment adjustment to improve the fatigue????

Christian, 13, systemic

>

> , first off I'm glad wasn't injured from his tumble

down

> the stairs!...now fatigue, yeah know it well and the problem

> is when ealing with the physical side of fatigue, it weighs down our

> emotional energy as well.

> I have had people tell or suggest that I need more vitiamins or

energy

> drinks! lol

> There are days when each foot step feels like i'm carrying 50 pbs

lead

> weights on my feet and the room feels like its huge.

> I do try to maintain daily vitiamins and energy drinks are not

going to

> hurt, but the only thing I can do to combat my fatigue, is just to

keep

> pushing.

> I know its not a lots of help or the answer you might really want to

> hear. But its the greatest weapon we have against this crud! is

sheer

> determination and the will to not let it defeat us.

> I don't know maybe there is someone here on the group who has a

> soloution, I know i'm game for any suggestions myself!!!!

> But for now, stay as active as you can, keep moving and stay

as

> limber as possible!

>

> Rusty (37 yr jra/as/systemic)

> actually just a creeky old man!...lol

[Guest guest]

,

Thanks for sharing your experience. How big of a problem is fatigue

for n? What I'm trying to gauge is my expectations, wondering

if I'm expecting something that is not attainable?

Here is an example of fatigue with Christian....he had his 13th b-day

party, a sleepover. The boys stayed up until 4:00 am! The next day

he went to sleep at 12:00 noon, slept until 6:30 p.m. got up and went

to bed at 8:30 p.m. He got up the following day for school. When he

got home from school he was exhausted. He wasn't able to get to

school the following day and slept most of the day. He struggled the

entire week to recover.

Christian, 13, systemic

> , We have found the fatigue is a big problem of the

disease.

> There are times that n has been near normal during the last

six years,

> but if she overdoes-she pays for it. She has not had the energy

her 14 year

> old sister has since diagnosis. The fatigue is worse when the

disease is

> most active. (n, 16, systemic)

> Fatigue

>

>

> >

> >

> > Can anyone comment on the fatigue factor with JRA, specifically

> > systemic kids? Fatigue has been a huge factor with my son from

the

> > start. He has had periods where it's better but he has never

> > returned to his normal pre-diagnosis stamina by any means. Last

> > night, he was " out of it " as he describes, and his leg was really

> > bothering him. He was coming down the stairs and his leg gave out

and

> > he fell down the entire flight of stairs. He is fine, but the leg

> > was still bothering him this morning and he looked extremly

> > fatigued. He stayed home and this afternoon he told me that there

> > was NO way he could have gone to school....that he was sooo tired.

> > Any input will be much appreciated.

> >

> > Thanks to all

> > ( 13, systemic)

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

, first off I'm glad wasn't injured from his tumble down

the stairs!...now fatigue, yeah know it well and the problem

is when ealing with the physical side of fatigue, it weighs down our

emotional energy as well.

I have had people tell or suggest that I need more vitiamins or energy

drinks! lol

There are days when each foot step feels like i'm carrying 50 pbs lead

weights on my feet and the room feels like its huge.

I do try to maintain daily vitiamins and energy drinks are not going to

hurt, but the only thing I can do to combat my fatigue, is just to keep

pushing.

I know its not a lots of help or the answer you might really want to

hear. But its the greatest weapon we have against this crud! is sheer

determination and the will to not let it defeat us.

I don't know maybe there is someone here on the group who has a

soloution, I know i'm game for any suggestions myself!!!!

But for now, stay as active as you can, keep moving and stay as

limber as possible!

Rusty (37 yr jra/as/systemic)

actually just a creeky old man!...lol

[Guest guest]

Hi . My daughter struggles with fatigue also. I don't think she

ever would have even been close to stying up to the 4:00 AM mark, in the first

place. She hates to go to sleepovers because she says they just make you tired

and sore. She is 14 and regularly puts herself to bed before 9:00, even on

weekends, because she is exhausted. I wish I had some advice on overcoming the

fatigue, but we haven't found the solution yet. Good luck. Kim

In a message dated 2/8/2005 7:02:47 PM Central Standard Time,

knoblefamily@... writes:

Here is an example of fatigue with Christian....he had his 13th b-day

party, a sleepover. The boys stayed up until 4:00 am! The next day

he went to sleep at 12:00 noon, slept until 6:30 p.m. got up and went

to bed at 8:30 p.m. He got up the following day for school. When he

got home from school he was exhausted. He wasn't able to get to

school the following day and slept most of the day. He struggled the

entire week to recover.

[Guest guest]

Just my 2 cent's lolol

I have seen the Fatigue syndrome in a few people. My opinion though is the

Fatigue syndrome is a way the body does when it's trying to repair itself.

Now I may be wrong about it. Think about it when we get a cold or just sick we

will sleep if we can. A doctor will even say drink plenty of fluids and rest.

We get better but with a disease such as JRA. The body is on call 24/7. I was

told and read that JRA is like the body fighting itself. That's why its so

hard to get the right combo of meds to help.

Some get immune to the combo easy some it takes a while. The body is a work

of God. No one knows so Doctor's play with combo's. So the Fatigue will come to

help

out the body.

I keep a eye on her iron as this will be one cause to feeling tired

(Anemia). She even changed her diet to see if it help's and to a point it does

help.

At 17 she has tried almost anything to help with pain and the Fatigue. If

anyone can tell me different or tell me anything new please feel free to let me

know.

Robbin

[Guest guest]

,

does too. I smile when she has that burst of energy.

tries to do all the thing's she can. But she know's tomorrow may bring a day in

bed. Paceing herself is hard. Looking back when was under 12 she was so

hyper and had so much energy. She even slept in her skates lolol. Was up with

the chickens lolol. Ready to go again. I try to get her out everyday even if

she doesn't feel like it. Even if she has to ride the Kroger scooter. At least

she's not stuck in the house. This fall will be trying for her with starting

College. I am behind her 100% with what she want's to do. may have JRA

but JRA ain't going to stop her lolol.

Robbin

[Guest guest]

, Caroline isn't systemic, so I really can't answer that question

for you. But, I know that Caroline sleeps more than most kids her age. She

takes a three hour nap every afternoon - it's like clockwork 12:30-3:30.

Since being taken off Enbrel she has been sleep for 4+ hours every afternoon

and she still sleep 9-10 hours at night.

I sure hope that feels better soon. It's so hard for a teenager to be

tired and try to keep up!

Alia and Caroline, age 3, poly and uveitis

Fatigue

Can anyone comment on the fatigue factor with JRA, specifically

systemic kids? Fatigue has been a huge factor with my son from the

start. He has had periods where it's better but he has never

returned to his normal pre-diagnosis stamina by any means. Last

night, he was " out of it " as he describes, and his leg was really

bothering him. He was coming down the stairs and his leg gave out and

he fell down the entire flight of stairs. He is fine, but the leg

was still bothering him this morning and he looked extremly

fatigued. He stayed home and this afternoon he told me that there

was NO way he could have gone to school....that he was sooo tired.

Any input will be much appreciated.

Thanks to all

( 13, systemic)

[Guest guest]

Robbin, n is 16, and we haven't found the magic bullet for fatigue.

She just has to pace herself, and when she does have energy, she has to

count her blessings.

Re: Fatigue

>

> Just my 2 cent's lolol

> I have seen the Fatigue syndrome in a few people. My opinion though is

the

> Fatigue syndrome is a way the body does when it's trying to repair itself.

> Now I may be wrong about it. Think about it when we get a cold or just

sick we

> will sleep if we can. A doctor will even say drink plenty of fluids and

rest.

> We get better but with a disease such as JRA. The body is on call 24/7. I

was

> told and read that JRA is like the body fighting itself. That's why its so

> hard to get the right combo of meds to help.

> Some get immune to the combo easy some it takes a while. The body is a

work

> of God. No one knows so Doctor's play with combo's. So the Fatigue will

come to

> help

> out the body.

> I keep a eye on her iron as this will be one cause to feeling tired

> (Anemia). She even changed her diet to see if it help's and to a point it

does help.

> At 17 she has tried almost anything to help with pain and the Fatigue. If

> anyone can tell me different or tell me anything new please feel free to

let me

> know.

> Robbin

>

>

>

[Guest guest]

She sounds like n. n wants to do everything, all at the same

time. n will never let life pass her by. I don't know what we will do

with college. n wants to go to the East coast for college.

Re: Fatigue

>

> ,

> does too. I smile when she has that burst of energy.

> tries to do all the thing's she can. But she know's tomorrow may bring a

day in

> bed. Paceing herself is hard. Looking back when was under 12 she

was so

> hyper and had so much energy. She even slept in her skates lolol. Was up

with

> the chickens lolol. Ready to go again. I try to get her out everyday even

if

> she doesn't feel like it. Even if she has to ride the Kroger scooter. At

least

> she's not stuck in the house. This fall will be trying for her with

starting

> College. I am behind her 100% with what she want's to do. may have

JRA

> but JRA ain't going to stop her lolol.

> Robbin

>

>

>

[Guest guest]

, n has to pace herself. If she plays, she is gonna pay. If

she stays up until 4am, it would take her several days to recuperate.

Fatigue

> >

> >

> > >

> > >

> > > Can anyone comment on the fatigue factor with JRA, specifically

> > > systemic kids? Fatigue has been a huge factor with my son from

> the

> > > start. He has had periods where it's better but he has never

> > > returned to his normal pre-diagnosis stamina by any means. Last

> > > night, he was " out of it " as he describes, and his leg was really

> > > bothering him. He was coming down the stairs and his leg gave out

> and

> > > he fell down the entire flight of stairs. He is fine, but the leg

> > > was still bothering him this morning and he looked extremly

> > > fatigued. He stayed home and this afternoon he told me that there

> > > was NO way he could have gone to school....that he was sooo tired.

> > > Any input will be much appreciated.

> > >

> > > Thanks to all

> > > ( 13, systemic)

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

, I think that the degree of exhaustion from the

sleepover is totally understandable and pretty normal for a jra kid. One

of the hardest things we've had to learn in the last 21/2 years is that

Teddy needs more rest than the average kid (ie, his 11 yr old brothers).

In fact, whenever we've pushed the envelope, he ended up sick with a

flare. It is unfortunate and discouraging, but once you figure out (he,

really is the one who needs to figure it out, being a teenager and all)

the limitations and work around them, he can lead a pretty close to

normal life.

I think it takes a while to learn that, in part because once they

start feeling well again and want to do all this extra stuff, we want to

believe that they can do it too. It's kind of a wakeup call each time it

happens, and eventually they learn how far they can push. I feel like

I'm still in the learning phase even now.

The other thing to keep in mind is that they are more susceptible

to becoming exhausted in the couple of days after the mtx dose, so

sometimes you can work around that by moving the dose day ahead or back a

day or by not planning exhausting stuff on the next day or two. hh

(Teddy 13 poly)

[Guest guest]

Rusty,

How are you doing? was asking about you the other day. Hope to see

you in Rhode Island this year. I really enjoyed meeting all that I did meet

in San Diego. was shy at first but between Donna, AJ, Tree, You,

Becki, , And the BOYS. This one that was at the Bon Fire Really made

open up and finally have some fun. said the bad part was it was too

short. lolol. If I left anyone out lolol Your included also . lolol. Thanks

Rusty.

Robbin

P.S.

ask's about the boy's she met there also but dang I can't keep up

with the names lolol.

[Guest guest]

Yeah Robbin, the exercise is important, even if it doesnt give you an

evergry boost. It does help to maintain

muscle integrety and that! is really imporrtant as we all know,

especially with a chronic muscular skeletal disease and any condition of

the auto imune system.

I try to keep up with my iron and multi vitiamins as well.

its all a daily battle.

Hope all are keeping dry and warwm! hugs!

hplta

Rusty

[Guest guest]

Fatigue is a big problem for me.

I keep bouncing around trying to figure out

if i should be addressing Adrenals, Leaky gut,

etc.

I would love to hear what others have done.

Kirk

On Tuesday, May 3, 2005, at 09:08 AM, suzt77 wrote:

> I was wondering if anyone else is finding fatigue to be a factor for

> them as well and if anyone has any tips on dealing with it.

>

> It's really starting to catch up with me. I can function but I just

> feel dragged out if you know what I mean.

>

> Anyone else?

>

> Cheers

>

> Sue

>

>

>

>

>

>

>

[Guest guest]

Well, I know I have an adrenal problem by the hormone results that keep coming

back. Seems that the doctor can't believe that I might have what she suspects as

she keeps sending me back to do the tests over and over again.

I'm hoping someone here has managed to find a way to sort of alleviate a certain

amount of fatiuge while recovering.

Kirk Tirakian <kirktalon@...> wrote:

Fatigue is a big problem for me.

I keep bouncing around trying to figure out

if i should be addressing Adrenals, Leaky gut,

etc.

I would love to hear what others have done.

Kirk

On Tuesday, May 3, 2005, at 09:08 AM, suzt77 wrote:

> I was wondering if anyone else is finding fatigue to be a factor for

> them as well and if anyone has any tips on dealing with it.

>

> It's really starting to catch up with me. I can function but I just

> feel dragged out if you know what I mean.

>

> Anyone else?

>

> Cheers

>

> Sue

>

>

>

>

>

>

>

[Guest guest]

Hi Sue,

Fatigue is also an issue for me maily because of lack of sleep.

Acupuncture has been good for me as well as chinese herbal remedies to sleep.

That works wonders.

>

>

>

[Guest guest]

I have major fatigue. For me, exercise helps, staying away from carbs

helps, getting sunlight helps, and splitting big jobs into smaller

portions helps me to cope. Walking is a really good way to exercise

when you don't feel like you have the strength to do a whole lot more

than that. Just sustain a good pace for 30 minutes. Also get 8 hours of

sleep at the same time every night preferably early to bed-early to

rise, if you can.

-Moon

On May 3, 2005, at 9:08 AM, suzt77 wrote:

> I was wondering if anyone else is finding fatigue to be a factor for

> them as well and if anyone has any tips on dealing with it.

> candidiasis/

>  

[Guest guest]

Fatigue has always been my most prevalent symptom. If I eat the wrong

thing - fatigue. If I am exposed to mold - fatigue. And on it goes.

I have been going to a ND for the past couple of years and have kept daily

notes on what I eat, how I feel, etc.

This past winter has been tough fatigue-wise and I have been going nuts

trying to figure it out. There is nothing wrong with my diet that I can

see - I am " following the candida rules " - am down to about a dozen food

items, don't overdo the antifungals or probiotics, do cleanses, etc. But

still the fatigue hangs in there.

I went away on the weekend for the first time since Christmas (though it

was a struggle and I would have rather stayed home). But lo and behold, I

had energy to burn when I was away. But hours after I returned, I was

feeling punk again - and the hives were starting again.

I checked my notes and realized - how could I have missed this? - that when

I am away from the house, I always feel better.

I have wracked my brain to think what in my environment might be causing the

fatigue. I have come to the conclusion that it can only be cat dander. I

adopted two cats a couple of years ago.

Of course I am going to get an allergy test but I am almost positive this is

the problem. One cat in particular is always on my lap. I noticed

yesterday that I felt better when I avoided her. (I also noted that on the

rare day when the weather is warmer and I can throw open the doors and

windows, my health also improves).

I mention the cat connection because perhaps someone else might be in the

same boat. Just because my eyes aren't watering or my nose isn't running

(classic symptoms of cat dander allergy), I never made the connection.

But of course I am devastated, just devastated.

Cheers

Fatigue

> I was wondering if anyone else is finding fatigue to be a factor for

> them as well and if anyone has any tips on dealing with it.

>

> It's really starting to catch up with me. I can function but I just

> feel dragged out if you know what I mean.

>

> Anyone else?

>

> Cheers

>

> Sue

>

>

>

>

>

>

>

[Guest guest]

I'm exercising and doing my best to have a regular sleep pattern however that's

been a bit of a problem for me as I'm pooped out from say 2:30 in the afternoon

and forge ahead at work and when it's about 10pm and I head for bed I feel

wired. I do eventually fall asleep but staying asleep seems to be an issue.

Eventually after a week or two like that I go to bed on a Friday night and my

hubby can't get me to get out of bed on a Saturday until 10am. I used to be such

a good sleeper now I really miss waking up and feeling refreshed. I don't snore

or have apnea as I've been tested. Been allergy tested recently and have

seasonal allergies to pollens but nothing else except some meds I knew about and

capers. I do do better when I use lavendar aromatherapy but I don't like a house

that smells like a bouquet all the time.

moonone2000@... wrote:I have major fatigue. For me, exercise helps,

staying away from carbs

helps, getting sunlight helps, and splitting big

---------------------------------

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