Re: Insomina and EN

[Guest guest]

I've had a sleeping problem for years. It started out like you

describe where my mind just wouldn't shut off. Now I can be

absolutely exhausted and just spill on my bed, yet sleep won't come.

Even when I finally get to sleep, its never enough - I'm always

tired. Its been this way for many years. First the Drs. blamed it on

my hbp, then on the medicine controlling my hbp. They tested me for

sleep apnia, but I haven't got it. Although I thought it strange that

when they tested me the machines said I was awake, but I heard

everything that was going on. I got to the hospital about 10p.m.

They let me wash, brush my teeth, then they stuck wires all over me.

It took me until almost midnight when the nurse said, " You have to go

to sleep. " I told her I'd try so I turned out the light and shut my

eyes. I heard the television - I wasn't paying attention to it, but

my husband was permitted to stay with me and I heard him talking to

the nurse, talking to the TV about the game that was on. I heard the

cheer of the crowds. I had to get up and go to the bathroom even

though they hadn't allowed me any water before bed. (My normal nightly

ritual is to wake up every hour to every 1 1/2 hours to urinate.) My

husband was still watching TV by that point and it must've been around

2 or 3 a.m. I crawled back into the bed with all those wires attached

to me. I kept trying to sleep and trying to sleep. I heard the nurse

on the phone. I heard calls from out in the hospital over the speaker.

Finally, I'd had enough, I was ready to scream I was soooooooo tired

and frustrated when I saw light coming on my face. The sun was up

already! I opened my eyes and was going to apologize to the nurse for

not being able to sleep and ruining the test. When she came in, told

me it'd been long enough and that we could leave - it was about 6:30

a.m. I was kind of in shock and it must've registered on my face, cuz

she looked at my funny and asked if I was okay. I said, " Its just

that I didn't sleep a wink. " She kind of laughed and said, " Well,

then my instruments were lying because according to everything I have,

you were asleep. " Ever since then I've wondered how I could hear

everything, be telling myself repeatedly to go to sleep, be so

incredibly frustrated and have the instruments register me as

sleeping. I mean at any point during that time all I would've had to

do was open my eyes. To this day I don't get it. No one has been able

to explain it to me.

Tawnya, IdioEN '97

[Guest guest]

On a different note, I went to the rheumatologist yesterday. The same

one that diagnosed my EN back in '97. The same one that saw me back in

2001 and reported on several things I don't remember him asking. The

same one that is reported to be by doctors " the best " in our area. I

guess I was disappointed. I wanted him to see what I and everyone else

sees and say, " yes you're right, you have lupus. " Unfortunately, he

did not. He took a urine sample, lots and lots of blood and some

xrays. Part of my heart is flat. He assumed back in 1997 that it was

because of the " heart enlargement " I was diagnosed with. However, my

new cardiologist doesn't see a heart enlargement. He believes that to

be a misdiagnosis. So then my rheumatologist is now left with the job

of figuring out why that part of my heart is flat - due to lung

inflammation or something else?? Anyway, I had written down all my

symptoms for him. Because I'm not in a flare right now, he says its

hard for him to tell. He took xrays of my arms to confirm there was

no bone damage. My hbp has been high lately. My cardiologist and I

thought it was because I hadn't taken it the day I went in - I was

running late. But I've been taking my medicine and its still high.

What was for the last several years, controlled, is no longer

controlled. So that has to be fixed. I don't have the rest of the

cardiology results. I have a followup appointment with him on 10/2.

But just like the research says, doctors are not willing to diagnose

lupus. They shy away from it. My doctor said yesterday that there

are 11 criteria for diagnosing lupus. He named some of them. The

positive ANA, which I have, but he says that can be attributed to

other things as well. I have the face rash, but he hasn't seen it so

he says that's " ify " . I am extremely sensitive to sunlight both my

eyes and my skin, but he says while the skin rash I get is A-typical,

its still " ify " . I have " EN " but that can also be associated with

lots of things, as can the dry mouth and dry eyes and multiple

miscarriages. He wants me to go see a urologist for my chronic UTI

issues/increased nightly urination. He says my ureter may be narrow

and then they'd have to go in with a tube and make it larger. My

issue with that is that catheters have always put me in major pain. It

takes me 4 or 5 days after they've taken out a catheter to actually

urinate without pain and it hurts so incredibly badly when they put it

in. I would rather have surgery than have a catheter put in. That's

how bad it is. However, while he's willing to admit I definitely have

a urinary tract issue - he isn't willing to guarantee the pain I've

been having is from that. He took an xray of my back. Its been killing

me for quite a while. I'd say I've had this pain that I first

associated with my kidneys off and on since 1997. It stopped for

several years, then came back about a year ago. He showed me the

xray. I have a severe curviture, right at the spot where I have all

the pain. He says that what I may be experiencing are muscle spasms

caused by the curviture. Now, I've had muscle spasms in my arms and

legs. My muscles just jump up and down involuntarily and it stops

pretty quickly. The pain I experience in my back is a throbbing,

aching pain like someone hit me in the back with a baseball bat.

Sometimes, it takes my breath away, sometimes I cry. That's not like

any muscle spasm I've ever heard of. What really bothered me was at

the end of the session he says, " If you have Lupus, at this point, it

seems to be a mild case. I am considering putting you on Plaquenil.

It'll help with the fatigue, fevers, and the inflammation. But I want

you to know we may still not find anything. " 1.) What is a " mild

case " of Lupus? Because I feel awful most of the time and it felt

like he was downplaying my feelings and aches when he said that. 2.)

Well, if you know that I have fatigue, fevers and inflammation - why

consider it, why not just put me on it and see if it works? 3.)

Plaquenil is not a steroid, so that's good. But the list of side

effects that it causes are symptoms I already have, so how would I

know if the medicine is causing side effects or if it was just my

regular symptoms? Anyway, I really didn't get anymore answers than I

had. Just more searching. The problem is no matter how much I find

out about auto immune diseases or how much research I do on what I

feel, I can't treat myself so what good does it do?

Tawnya, IdioEN '97

[Guest guest]

Hey there. I feel your sleeplessness. With my last

bout of stress that caused me whatever congestion I'm

dealing with now, I can't sleep for typically more

than 1.5 hours at a time each night, unless I have a

couple glasses of wine or an extra large shot of

NYQUIL. I think that whatever brings on the EN, etc.

going on in your life also preoccupies your brain

enough to disturb sleep. I feel like an insomniac

often.

One trick that works for me if I can focus on it is to

try to relax all the muscles in my body, starting with

my feet and moving upward a little at a time, and not

until i'm sure everything at that level is relaxed.

Try laying on your back or whatever comfy position,

focus on " putting your toes at ease " , give it a

moment, make sure you feel them relax, then move up a

little. When I can really make that work, I never make

it much past my ribs and I'm sleeping. No true

cure-all for insomnia, but might be worth a try.

--- wildmumbo wrote:

> Hi again

>

> I've got EN currently but am managing to keep it

> under control at

> present by taking prednisolone 7.5 mg. At present

> though I am having

> major problems with getting to sleep at night, my

> mind wont switch off

> at all. I don't know whether this is related to the

> EN (can't recall

> it happening before during previous attacks of EN)

> or if it could be

> due to the tablets. I just feel so tired and washed

> out.

>

> I've also got plantar fasciitis in my left foot, and

> my left leg keeps

> sweliing up. Have been told to lose weight, which

> isn't easy when

> taking steroids, but I am trying. I guess the

> general stress of all

> of this could be causing the sleeplessness but I

> just wondered if

> anyone else have sleep problems?

>

> Fi

>

>

>

>

>

__________________________________________________

[Guest guest]

hi fi,

actually, it's not the en causing the insomina, most likely. it is

the prednosone. insomina is a known and almost 100% for sure side

effect of prednosone. unfortunately, if you stay on prednosone the

best thing the doc can do for your is give you a sleep aid. try

taking 120mg of prednosone a day and see how much sleep you get!

try, like, .... NONE! some people have to get up and do things,

like, clean house. i got a sleep aid and that made a world of

difference. getting off the pred would be the preferrable thing to

do, but sometimes that is not always possbile.

jeff

>

> Hi again

>

> I've got EN currently but am managing to keep it under control at

> present by taking prednisolone 7.5 mg. At present though I am

having

> major problems with getting to sleep at night, my mind wont switch

off

> at all. I don't know whether this is related to the EN (can't

recall

> it happening before during previous attacks of EN) or if it could

be

> due to the tablets. I just feel so tired and washed out.

>

> I've also got plantar fasciitis in my left foot, and my left leg

keeps

> sweliing up. Have been told to lose weight, which isn't easy when

> taking steroids, but I am trying. I guess the general stress of

all

> of this could be causing the sleeplessness but I just wondered if

> anyone else have sleep problems?

>

> Fi

>