Re: Liz - CFS and exhaustion

[Guest guest]

Hi Liz -

I think we can all relate to your exhaustion at some level. Mine sounds like

yours. Somedays even a shower is out of the question. I have one or two days

a month when I feel like I have some energy and try to cram a lot in those

infrequent times. I would love to be able to plan something a month (or a

week) ahead of time and know that I would be able to go. I always have to

preface an acceptance to an invitation by saying that I will do everything I

can to be there.

I, too, have been diagnosed with CFS, PA, Fibro. My question is how can you

tell which one of those is causing the severe fatigue that you are having?

But then, does it really matter? I feel like a different person if I can

sleep more that 2 1/2 hours at a time at night. I wake up, sometimes go to

the bathroom and go right back to sleep. But when I get up in the AM I feel

like I haven't even been to bed. I will wake up at least 3-5 times a night.

I have tried so many combinations to give me the deep sleep I need, haven't

found the right combination yet. Right now, I am taking xanax xr (.05mg -2 a

few hours before bedtime) and also Ambien. (Along with about another 10

meds, including lexapro and wellbutrin xl, and Enbrel. The ambien does make

it easier to fall asleep at night and I do sleep slightly longer at a time,

but not enough to right home about.

I am with you - does anyone know anything out there that will put you to

sleep for 6-8 hours of constant sleep? Getting up all night just makes me

want to stay in bed until noon (sleeping on and off) and that is such a

waste of 1/2 of a day!

One P.S. - there has been some talk about eye problems with PA. I am 54 and

have 2 cataracts that were probably hastened by the prednisone that I take.

I had 1 removed and then had to have surgery again on the same eye because

my vision was very limited. They put another lens in on top of the

intraocular lens they put in when they took out the cataract. The success

rate of the 2nd surgery has been a little better so far, although it's only

been 3 weeks since the surgery. My vision seems to change daily in that eye

so we are going to just let things alone for now and I will be checked about

every 3 weeks. They aren't touching the 2nd eye (unless the cataract makes

it impossible to see) until the first one is normal. This is just a word of

advice to be checked by an ophthalmologist every year or so. I had no idea I

had cataracts until I went for a check up - or that they can be hastened by

PA and the treatment for it.

Take care everyone-

Maureen

[Guest guest]

In a message dated 6/14/2004 1:28:54 PM Eastern Standard Time,

OSBORNE@... writes:

I, too, have been diagnosed with CFS, PA, Fibro. My question is how can you

tell which one of those is causing the severe fatigue that you are having?

But then, does it really matter? I feel like a different person if I can

sleep more that 2 1/2 hours at a time at night. I wake up, sometimes go to

the bathroom and go right back to sleep. But when I get up in the AM I feel

like I haven't even been to bed. I will wake up at least 3-5 times a night.

I also have the fatigue you are talking about and have PA and fibro. I

don't know which cause the fatigue the most. I always feel in the morning

like

I am never refreshed from a night's sleep. I have been waiting for sleep

study results to see if I have apnea and the doctor's office is taking a long

time to get back to me.

Janet

[Guest guest]

Hi, Maureen,

I don't have PA but my husband does. But I do have fibro, (hypothyroidism,

depression, narcolepsy,

delayed sleep phase syndrome, menopausal, and ADD inattentive type). I've found

that melatonin

works well for me. This was the suggestion for the DSPS. But ask your doctor

about it first.

Also I know menopause brought more sleep difficulties for me. I've read that

natural progesterone

can help sleep because it's calming. I'm currently pursuing the bio-identical

hormones. (I recently

sent more info on this subject to those who e-mailed me. So if you or anyone is

interested, let me

know. Sorry, if you already have. I've heard from so many I've lost track. LOL)

in Va.

-----

I am with you - does anyone know anything out there that will put you to

sleep for 6-8 hours of constant sleep? Getting up all night just makes me

want to stay in bed until noon (sleeping on and off) and that is such a

waste of 1/2 of a day!

[Guest guest]

Hi Liz and Others, I lost my job in Jan and my insurance, and

consequently good access to Rxs renewals. I had been taking Flexeril

(10 mg.) at bedtime to get a good night's sleep. When I ran out and

couldn't get a renewal of the RX, I started trying Benadryl (I'm

currently using 100 mg. at bedtime). It limits what I can take for

allergies, but getting the sleep I need makes the bug bites more

bearable (and itch creams of all sorts are out there).

I'm just started a new job and benies start July 1 so I hope to be

able to get back on the Flexeril, but I can vouch for the

effectiveness of Benadryl - just start with one 25 mg.pill and

slowly work up to an effective level (no more than 100 mgs at a time

without Dr.s consent). Benadryl has gotten a bad name because of its

sedative effect, but we are looking for a safe sedative here, and

Benadryl has been used for so long, its safety is out there - a few

will react because they just have a quirk - most can take it, if

they are not driving or operating machinery and last check was that

people going to bed aren't doing that sort of thing.

Getting my ZZZZs, JudiRose

> Hi Liz -

>

> I think we can all relate to your exhaustion at some level. Mine

sounds like

> yours. Somedays even a shower is out of the question. I have one

or two days

> a month when I feel like I have some energy and try to cram a lot

in those

> infrequent times. I would love to be able to plan something a

month (or a

> week) ahead of time and know that I would be able to go. I always

have to

> preface an acceptance to an invitation by saying that I will do

everything I

> can to be there.

>

> I, too, have been diagnosed with CFS, PA, Fibro. My question is

how can you

> tell which one of those is causing the severe fatigue that you are

having?

> But then, does it really matter? I feel like a different person if

I can

> sleep more that 2 1/2 hours at a time at night. I wake up,

sometimes go to

> the bathroom and go right back to sleep. But when I get up in the

AM I feel

> like I haven't even been to bed. I will wake up at least 3-5 times

a night.

> I have tried so many combinations to give me the deep sleep I

need, haven't

> found the right combination yet. Right now, I am taking xanax xr

(.05mg -2 a

> few hours before bedtime) and also Ambien. (Along with about

another 10

> meds, including lexapro and wellbutrin xl, and Enbrel. The ambien

does make

> it easier to fall asleep at night and I do sleep slightly longer

at a time,

> but not enough to right home about.

>

> I am with you - does anyone know anything out there that will put

you to

> sleep for 6-8 hours of constant sleep? Getting up all night just

makes me

> want to stay in bed until noon (sleeping on and off) and that is

such a

> waste of 1/2 of a day!

>

> One P.S. - there has been some talk about eye problems with PA. I

am 54 and

> have 2 cataracts that were probably hastened by the prednisone

that I take.

> I had 1 removed and then had to have surgery again on the same eye

because

> my vision was very limited. They put another lens in on top of the

> intraocular lens they put in when they took out the cataract. The

success

> rate of the 2nd surgery has been a little better so far, although

it's only

> been 3 weeks since the surgery. My vision seems to change daily in

that eye

> so we are going to just let things alone for now and I will be

checked about

> every 3 weeks. They aren't touching the 2nd eye (unless the

cataract makes

> it impossible to see) until the first one is normal. This is just

a word of

> advice to be checked by an ophthalmologist every year or so. I had

no idea I

> had cataracts until I went for a check up - or that they can be

hastened by

> PA and the treatment for it.

>

> Take care everyone-

> Maureen