Re: Has anyone here had a sleep study?

[Guest guest]

I had a sleep study done as well and they said I had a mild case of

sleep apnea and they also said that I do not go into deep rem sleep.

I do have cfs and fibromyalgia I live at a level 8-10 on a daily

basis of pain. MOst night I wake up in the middel of the night it

feels like I have a broken neck it hurts so bad no to mention my arms

wrists hips it feel like I sleep on a cement floor... They tell me if

I got deep restful sleep I wouldnt have the pain. I somehow dont

believe this tobe true because even when I have taken some heavy pain

medication I dont feel as much pain, I seem to be sleeping better and

the pain only returns in the morning till my next dose of meds. what

a life eh...I hope you get the answers you are looking for. It is a

tough road to travel.hoepfully someone will come up with a

solution....

-- In CFAlliance , " bradchelle " wrote:

>

> I'm just curious...has anyone here had a sleep study? If so, did

they

> find anything?

>

> After being diagnosed with CFS 7 years ago, my new primary care doc

> sent me to have a sleep study last year. They found two things:

> obstructive sleep apnea and something called " alpha wave

intrusion " .

>

> The sleep doc told me that the alpha wave intrusion was something

he

> sees regularly in patients who report chronic pain. It's basically

> your brain sending (or reacting to, they can't be sure) signals of

pain

> throughout your body. This brain activity interferes with a

person's

[Guest guest]

I used to be in such pain but since I started this herbal nutrition program my

pain is managable with out the perscription pain meds.  I was taking 3000 mg of

Acetomeniphin a day and when that did not work I had some perkocet.

I have been dealing with chronic pain since I was fifteen.  I broke my neck hill

climbing when I was fifteen and since then I have had compression fractures to

my spine numerous times....working as an auto mechanic and in construction wears

a body down fast.

Taking high doses of pain meds is a good way to destroy your liver.  You need to

back off them incrimentally and as you do your pain threshold tolerance will

rise so that you do not need the meds.

[Guest guest]

Hi, also had sleep study done. It looked like my arousal brain waves

were acting evcery 15 min for arousal. And very little REM. I thought

the study was a tough noght anyway, felt like I didn't sleep at all,

all those wires and such, ugh !!

Jeanette

>

> I had a sleep study done as well and they said I had a mild case of

> sleep apnea and they also said that I do not go into deep rem sleep.

> I do have cfs and fibromyalgia I live at a level 8-10 on a daily

> basis of pain. MOst night I wake up in the middel of the night it

> feels like I have a broken neck it hurts so bad no to mention my

arms

> wrists hips it feel like I sleep on a cement floor... They tell me

if

> I got deep restful sleep I wouldnt have the pain. I somehow dont

> believe this tobe true because even when I have taken some heavy

pain

> medication I dont feel as much pain, I seem to be sleeping better

and

> the pain only returns in the morning till my next dose of meds. what

> a life eh...I hope you get the answers you are looking for.

[Guest guest]

I've wondered about getting a sleep study done. A neuro/sleep dr that I saw

said that I shouldn't because much of my problem is getting to sleep and I think

she said that the sleep meds I take would effect the results. I don't sleep w/o

them...sometimes going for 3 days on no sleep. But I would like to know what

happens when I do get to sleep. I usually wake up every 2 to 3 hrs. When people

ask me how much sleep I got the night before (not understanding why I'm tired) I

say 8hrs. Well I do sleep for 8hrs on meds, but with waking up every 2hrs I

don't think that I get quality sleep. It's supposed to take 2hrs to reach REM

sleep. I've had an EEG done while awake but relaxed (sort of) and it was normal.

-Alia

[Guest guest]

I just had a sleep study two nights ago... The meds may effect the

test to a point but then the doctors could see what is going on while

you are sleeping.. ie Restless legs, or arms... how many times you

wake up. and so on.. it could be helpful.. I have not gotten my

results back yet still waiting to see.

>

> I've wondered about getting a sleep study done. A neuro/sleep dr

that I saw said that I shouldn't because much of my problem is getting

to sleep and I think she said that the sleep meds I take would effect

the results. I don't sleep w/o them...sometimes going for 3 days on no

sleep. But I would like to know what happens when I do get to sleep. I

usually wake up every 2 to 3 hrs. When people ask me how much sleep I

got the night before (not understanding why I'm tired) I say 8hrs.

Well I do sleep for 8hrs on meds, but with waking up every 2hrs I

don't think that I get quality sleep. It's supposed to take 2hrs to

reach REM sleep. I've had an EEG done while awake but relaxed (sort

of) and it was normal.

>

> -Alia

>

[Guest guest]

Thanks for the responses.it's nice to know I'm not alone. I may be in bed

for 8 hours (or longer), but I'm vaguely aware of everything all night long.

If this alpha wave intrusion is consistent among people who have chronic

pain issues, seems like we should be using this information to help document

our illness. I cannot explain how happy I was to have a doctor show me

PHYSICAL EVIDENCE of my pain. For 7 years, I've known I was truly ill, but

it was so wonderful to see the scientific documentation of my pain.

[Guest guest]

Diane    

>

> Subject: Re: Has anyone here had a sleep study?

> To: CFAlliance

> Date: Saturday, January 24, 2009, 2:06 PM

> I just had a sleep study two nights ago... The meds may

> effect the

> test to a point but then the doctors could see what is

> going on while

> you are sleeping.. ie Restless legs, or arms... how many

> times you

> wake up. and so on.. it could be helpful.. I have not

> gotten my

> results back yet still waiting to see.

[Guest guest]

I was sent to a sleep study and not looking forward to it. I'm afraid

my anticpatory anxiety about not being able to sleep well with wires

and everything will cause more distress on my body. Really want to get

out of it but feel like I have to comply with doctor's orders in order

to get disability. But I rather not undergo that kind of stress.

Have any of you with sleep disorders got your cortisol levels checked?

I had a saliva test done at this excellent lab called Diagnos techs

and it was determined my cortisol levels were high at night which is

why I had difficulty sleeping. Cortisol levels should be low at night

and high in the morning.

>

> I've wondered about getting a sleep study done. A neuro/sleep dr

that I saw said that I shouldn't because much of my problem is getting

to sleep and I think she said that the sleep meds I take would effect

the results. I don't sleep w/o them...sometimes going for 3 days on no

sleep. But I would like to know what happens when I do get to sleep. I

usually wake up every 2 to 3 hrs.

[Guest guest]

Hi Everyone, I've been very

quiet lately since my hip

surgery. It didn't put me into

relapse, but my energy was low

before the surgery and after 3

weeks in surgical rehab and

with 2 Physical therapy appts.

a week I don't have a lot of

energy/time left. I have been

reading when I am up to it and

have been trying to keep track

of what's been happening. I

now have a new " something "

which I will write a separate

email about because I wanted

to respond to the question of

the sleep study.

I had a sleep study a number

of years ago (more than 3 less

than 5) and it was quite a

revelation. I take

amitriptylene and melatonin to

sleep, they seem to do it for

me, thank goodness and I was

told I could take any meds I

was prescribed. One of the

most enlightening things they

found - besides the fact that

my legs move almost constantly

all night, and I have repeated

periods of not breathing

sometimes up to almost a

minute - was that it took me 3

hours to get to REM sleep for

the first time. Most " healthy "

people get there much sooner -

I think the doctor said

within 90 minutes. REM sleep

also should come every 90

minutes throughout the night,

but it didn't for me. There

were much more lengthy times

between REM periods. I'm sure

we all know that it's the REM

sleep that we must have to

keep body and soul together.

They prescribed a CPAP machine

which I used for a number of

months until I began to

develop serious sinus problems

along with deep coughing. (I

have a friend with CFIDS who

is just trying to deal with

starting a CPAP and it is

causing her great pain in her

lungs. They have put her on a

BiPAP so we shall see what

happens. I haven't used a

machine for 3-5 years yet I

still have breathing problems

I didn't have before the CPAP.

It's definitely worth getting

the sleep test, I believe. But

if you can possibly find a

doctor who understands (or at

least accepts the reality of)

CFS, it will help a lot.

Knowing what goes on while you

are sleeping, how much waking

you actually do, how deep

you go etc. is something of

great value to those of us

with CFS. So many darned

things go together to put us

where we are.

Much love to all, Taffy

" And the consequence of our

existence

Is the reason for our

being. "

Stuart Todd 5/27/71 -

3/13/90

" God be between you and harm

in all the

empty places you must

walk. "

Jill Riley 4/24/63 -

10/12/00