Re: Is anyone.... and question on fatigue

[Guest guest]

Hi Bram and everyone,

I know you posted this several days ago, but I'm just getting to

this week's reading. I do the same thing--I swim 3 or 4 mornings

each week, usually first thing in the morning. When I'm in the

water doing my thing, I feel energized and lively most of the time.

But then an hour or two later and I am just dragging. I've fallen

asleep sitting straight up on the couch or sitting at my desk

working.

The fatigue part of this disease is making me CRAZY. Before I got

Still's (last June), I never needed more than 6 or 7 hours of

sleep. Now I'm tired constantly, napping constantly. My life

consists of working, sleeping, occasionally doing housework, and

sleeping some more. My friends and boyfriend feel neglected. I'm

getting slapped with late charges on bills--not because I can't pay

them but because instead of doing my house business I'm sleeping.

Yesterday I went to work with unwashed hair because I decided to

sleep the extra half hour. Does anyone have any suggestions for how

to handle the fatigue? I'm on Enbrel, MTX, and prednisone (tapering

off this stuff right now but am flaring hard). Should I just plan

on sleeping like crazy? For how long? months? years?

in Maine

>

> in the same ball park as I am? I can actually have such a blast of

> energy to do a karate class(1-11/2 hrs. of INTENSE physical

> training);and then be a limp dishcloth in agony, another day? So

tired

> that my eyes close while reading?

> One thing I must admit;I am NOT superman in my class by any means.

When

> my hands(My worst tissue damage so far)are swollen and red and

blue;I

> do have to back off certain exercises a bit.

> I believe one reason that I am able to DO these Martial Arts

classes Is

> because of the power of the mind...I LOVE doing them. My mind is

> stronger than ever now,and I WILL NOT GIVE IT UP.

> Any feedback will be VERY appreciated!!

> Sincerely;Bram.

>

[Guest guest]

Hi

I'm afraid that I haven't any suggestions to help with the fatigue but can

only sympathize as I suffer the same. Last Sunday I got up at about 8.45

a.m supposidly to watch a recorded football match with my husband I started

watching and could hardly keep my eyes open, in the end I said " I must go

back to bed for an hour " went straight back to bed and got woken up again at

lunch time . The irony is I dont sleep well at night. Even if I force

myself to keep awake all day which is hard I still don't sleep well at

night. Stills is really a peculiar disease but I do find the fatigue the

most difficult to live with.

I know this hasn't been much help but just think we may be nodding off

together ahhhh.

Take care

Love

Joan UK

Re: Is anyone.... and question on fatigue

Hi Bram and everyone,

I know you posted this several days ago, but I'm just getting to

this week's reading. I do the same thing--I swim 3 or 4 mornings

each week, usually first thing in the morning. When I'm in the

water doing my thing, I feel energized and lively most of the time.

But then an hour or two later and I am just dragging. I've fallen

asleep sitting straight up on the couch or sitting at my desk

working.

The fatigue part of this disease is making me CRAZY. Before I got

Still's (last June), I never needed more than 6 or 7 hours of

sleep. Now I'm tired constantly, napping constantly. My life

consists of working, sleeping, occasionally doing housework, and

sleeping some more. My friends and boyfriend feel neglected. I'm

getting slapped with late charges on bills--not because I can't pay

them but because instead of doing my house business I'm sleeping.

Yesterday I went to work with unwashed hair because I decided to

sleep the extra half hour. Does anyone have any suggestions for how

to handle the fatigue? I'm on Enbrel, MTX, and prednisone (tapering

off this stuff right now but am flaring hard). Should I just plan

on sleeping like crazy? For how long? months? years?

in Maine

>

> in the same ball park as I am? I can actually have such a blast of

> energy to do a karate class(1-11/2 hrs. of INTENSE physical

> training);and then be a limp dishcloth in agony, another day? So

tired

> that my eyes close while reading?

> One thing I must admit;I am NOT superman in my class by any means.

When

> my hands(My worst tissue damage so far)are swollen and red and

blue;I

> do have to back off certain exercises a bit.

> I believe one reason that I am able to DO these Martial Arts

classes Is

> because of the power of the mind...I LOVE doing them. My mind is

> stronger than ever now,and I WILL NOT GIVE IT UP.

> Any feedback will be VERY appreciated!!

> Sincerely;Bram.

>

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended

to replace the services of a trained health professional or to be a

substitute for medical advice of physicians and/or other health care

professionals. The International Still's Disease Foundation is not engaged

in rendering medical or professional medical services. You should consult

your physician on specific medical questions, particularly in matters

requiring diagnosis or medical attention. The International Still's Disease

Foundation makes no representations or warranties with respect to any

treatment, action, application, medication or preparation by any person

following the information offered or provided within this support form.

ion by any person following the information offered or provided within

this support form.

[Guest guest]

Ah, Joan... that IS a comfort! Thank you! Anyone else want to join

the collective nap group?

in Maine

> I know this hasn't been much help but just think we may be nodding

off

> together ahhhh.

>

> Take care

>

> Love

>

> Joan UK

> -----Original Message-----

[Guest guest]

Joan and ,

I am right there with you two. I have been so, so tired lately. Luckily

today was my day off from work. I slept three hours during the day and that

was after a good nights sleep without any sleeping meds. I sure hope this

doesn't continue. Are we all in hibernation mode?

# 2 - Anchorage, AK

-- Re: Is anyone.... and question on fatigue

Ah, Joan... that IS a comfort! Thank you! Anyone else want to join

the collective nap group?

in Maine

> I know this hasn't been much help but just think we may be nodding

off

> together ahhhh.

>

> Take care

>

> Love

>

> Joan UK

> -----Original Message-----

[Guest guest]

Bram, Joan, , #2 ~

Scoot over....I'm grabbing my blankie & will be joining y'all....as

soon as I get enough oomph to get to the group nap room....

Barbara in Houston

>

> Joan and ,

>

I am right there with you two. I have been so, so tired lately.

Luckily today was my day off from work. I slept three hours during

the day and that was after a good nights sleep without any sleeping

meds. I sure hope this doesn't continue. Are we all in hibernation

mode?

>

> # 2 - Anchorage, AK

>

> Ah, Joan... that IS a comfort! Thank you! Anyone else want to

join the collective nap group?

> in Maine

>

>

I know this hasn't been much help but just think we may be nodding

off together ahhhh. Take care

> >

> > Love

> >

> > Joan UK

[Guest guest]

Dear ,

You can go through periods of remission when the fatigue gets better. The

problem is not only the disease but also some of the meds can make you tired.

MTX will knock you out usually, so I take mine on Saturday when I don't work.

Another thing I've found is taking cat naps will help. I'll lay down for an

hour or so before i have to get ready for work and even if I can't sleep (I have

a 4 year old at home) it still helps.

How much do you work? I can do about 15 hours per week and that's the limit in

part because of the fatigue. It's a desk job and no lifting and that reminds

me, doing anything physical (walking, lifting, carrying my children) for too

long can make the extreme fatigue come on in a matter of minutes. So

controlling how much energy you will expend in a day and when is the key. The

fatigue gets a little better as the Stills gets better. During a flare it's

normal to be tired constantly..

I sympathize with how frustrating this can be when you used to have an active

lifestyle. I try to remember how bad it was when I first got sick and I

couldn't even get out of bed for 3 months, and then the fatigue now doesn't seem

so bad.

Hope this helps a little ,

-beth

Portland, Maine

[Guest guest]

Thanks, beth. I went back to work full time in January (40-50

hours) but am on a flex schedule that allows me to work at home

sometimes. I'm slowly starting to realize that working this many

hours may be impossible if I want to have any kind of " life " ! Plus

I'm so far behind in all of my projects that I'm not doing my

employer any good either.

One big discovery this morning was that the coffee I've been brewing

for the last two weeks was DECAF--at least now I've solved the

mystery of why even after a 3-4 cups of coffee in the morning I was

still crawling around like a slug!

Looks like we're neighbors--I'm in Gray, Maine.

in Maine

>

> Dear ,

>

> You can go through periods of remission when the fatigue gets

better. The problem is not only the disease but also some of the

meds can make you tired. MTX will knock you out usually, so I take

mine on Saturday when I don't work.

> Another thing I've found is taking cat naps will help. I'll lay

down for an hour or so before i have to get ready for work and even

if I can't sleep (I have a 4 year old at home) it still helps.

>

> How much do you work? I can do about 15 hours per week and that's

the limit in part because of the fatigue. It's a desk job and no

lifting and that reminds me, doing anything physical (walking,

lifting, carrying my children) for too long can make the extreme

fatigue come on in a matter of minutes. So controlling how much

energy you will expend in a day and when is the key. The fatigue

gets a little better as the Stills gets better. During a flare it's

normal to be tired constantly..

>

> I sympathize with how frustrating this can be when you used to have

an active lifestyle. I try to remember how bad it was when I first

got sick and I couldn't even get out of bed for 3 months, and then

the fatigue now doesn't seem so bad.

>

> Hope this helps a little ,

>

>

> -beth

> Portland, Maine

>

>

>

>

>

[Guest guest]

I'm on the way. Is there a fireplace in this room? I will bring the stuff to

make some smore's. YUM!

Sherry in Toledo

-------------- Original message from " " :

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

Ah, Joan... that IS a comfort! Thank you! Anyone else want to join

the collective nap group?

in Maine

> I know this hasn't been much help but just think we may be nodding

off

> together ahhhh.

>

> Take care

>

> Love

>

> Joan UK

> -----Original Message-----

Visit the Still's Disease Message Board

http://disc.server.com/Indices/148599.html

The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute for

medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical or

professional medical services. You should consult your physician on specific

medical questions, particularly in matters requiring diagnosis or medical

attention. The International Still's Disease Foundation makes no representations

or warranties with respect to any treatment, action, application, medication or

preparation by any person following the information offered or provided within

this support form.

ion by any person following the information offered or provided within this

support form.