A Few Questions...

[Guest guest]

First off, I want to thank everyone here for all of your help and

support. I am new here and this group has been so much help to me. I

noticed a few people have mentioned some problems with sleep. I am

definitely having some sleep issues. My problem is that I can't stay

awake. I sleep all night, all day, wake up for a few hours, eat, go

back to sleep, and do it all over again. I sleep at work every day

that I actually make it to work. Other times I sleep all night and

all day, then I can't sleep that night. It makes it dificult to go

to work. Anyone else having these same problems?

Another problem is that I've become depressed. I wasn't depressed

before becoming sick with EN. I don't always have lumps, but it

seems that I always have something going on, whether it is the

lumps, being extremely tired, painful joints, severe back pain, foot

pain, fever.....it always seems to be at least one of these

symptoms. So I guess it seems that my flares don't have an exact

point when they start and stop. Does anyone else have this?

One last thing....I have started to get these red bumps on my face

that look kind of like pimples, but they hurt worse and they feel

much deeper than pimples. The skin on and around the bumps start to

peel also. My face has never broken out with acne and it feels

different than pimples. These bumps are only on my face. Any ideas?

Thanks for listening and for your help.

[Guest guest]

,

I am also a new member to the group and it has been great to be able

to read about other people's experiences with en since every doctor

I have seen seems to know so little about it. I do sometimes

experience periods of fatigue (though not to the extent you seem to

be experiencing it.) And I have actually attributed the fatigue to

depression, which I am just now realizing may be caused by the en.

Also, as far as the bumps on your face, that sounds very familiar.

I recently had these bumps. I would just get one near my cheekbone

and thinking it was what I've always referred to as an " ingrown "

pimple, I picked and picked at it, but it did nothing other than cut

my face up and leave a huge scab. When I finally gave up on it and

let it heal, I got another one on the other side. I honestly just

thought that it was an abnormal pimple, but once again after reading

info on this site (including your message) a lot of things are

starting to fall into place.

Now one more thing I want to add: One of the reasons I started

searching for a support group for this is due to a new thing I've

been experiencing lately. I got a very painful " stye " under my

eyelid which I saw my primary care doctor about. She prescribed

some eyedrops and sent me on my way. (This was the first time I had

ever gotten a stye before.) Finally, after eyedrops and warm

compresses, it went away and of course, a new one appeared on my

other eye. I had completely stopped wearing eye makeup and taken

all other recommended precautions to avoid infecting the other eye.

These " styes " are very painful just like the en bumps I get on my

shins (they feel like bruises) and I actually asked my primary care

doctor if they could be related and I got the typical " could be but

so little is known about the disease it's hard to tell. " That's

when I decided to research a little more and found this group and on

the website some info on sarcoidosis of the eye. I am wondering if

anyone that has this could tell me their opinion. (I tested

negative for sarcoidosis with a chest x-ray when I was first

diagnosed with en about 8 years ago.) Thanks for any help anybody

can give me.

>

> First off, I want to thank everyone here for all of your help and

> support. I am new here and this group has been so much help to me.

I

> noticed a few people have mentioned some problems with sleep. I am

> definitely having some sleep issues. My problem is that I can't

stay

> awake. I sleep all night, all day, wake up for a few hours, eat,

go

> back to sleep, and do it all over again. I sleep at work every day

> that I actually make it to work. Other times I sleep all night and

> all day, then I can't sleep that night. It makes it dificult to go

> to work. Anyone else having these same problems?

>

> Another problem is that I've become depressed. I wasn't depressed

> before becoming sick with EN. I don't always have lumps, but it

> seems that I always have something going on, whether it is the

> lumps, being extremely tired, painful joints, severe back pain,

foot

> pain, fever.....it always seems to be at least one of these

> symptoms. So I guess it seems that my flares don't have an exact

> point when they start and stop. Does anyone else have this?

>

> One last thing....I have started to get these red bumps on my face

> that look kind of like pimples, but they hurt worse and they feel

> much deeper than pimples. The skin on and around the bumps start

to

> peel also. My face has never broken out with acne and it feels

> different than pimples. These bumps are only on my face. Any ideas?

> Thanks for listening and for your help.

>

>

>

[Guest guest]

It's weird that you responded to my message when you did. Last week I

started having pain in my left eye. It was not red, but painful and a

little swollen at times. I figured it would go away and when it

didn't, I went to the eye dr. They did a full eye exam, put the dye

in to see if there was a tiny piece of debris....they found nothing.

Gave me eye drops and a gel to put in my eye at night time. He said

it should be better in a few days and it has not gotten any better. I

don't want to waste my time and money going back and the dr just

telling me he's not sure what's wrong. I'm not really sure what to

do.

> >

> > First off, I want to thank everyone here for all of your help and

> > support. I am new here and this group has been so much help to

me.

> I

> > noticed a few people have mentioned some problems with sleep. I

am

> > definitely having some sleep issues. My problem is that I can't

> stay

> > awake. I sleep all night, all day, wake up for a few hours, eat,

> go

> > back to sleep, and do it all over again. I sleep at work every

day

> > that I actually make it to work. Other times I sleep all night

and

> > all day, then I can't sleep that night. It makes it dificult to

go

> > to work. Anyone else having these same problems?

> >

> > Another problem is that I've become depressed. I wasn't depressed

> > before becoming sick with EN. I don't always have lumps, but it

> > seems that I always have something going on, whether it is the

> > lumps, being extremely tired, painful joints, severe back pain,

> foot

> > pain, fever.....it always seems to be at least one of these

> > symptoms. So I guess it seems that my flares don't have an exact

> > point when they start and stop. Does anyone else have this?

> >

> > One last thing....I have started to get these red bumps on my

face

> > that look kind of like pimples, but they hurt worse and they feel

> > much deeper than pimples. The skin on and around the bumps start

> to

> > peel also. My face has never broken out with acne and it feels

> > different than pimples. These bumps are only on my face. Any

ideas?

> > Thanks for listening and for your help.

> >

> >

> >

>

[Guest guest]

Funny again! I just woke up this morning with both eyelids red and

puffy and painful. I'm going to wait to see if it gets worse and if

so, will ask my doctor about having a test for sarcoidosis. It

seems us finding info on this site and bringing it to doctors may be

the only way to find out some of the things that are wrong. (since

not only is so little known about this disease but it seems to be so

drastically different from one person to the next). I'll keep you

posted.

> > >

> > > First off, I want to thank everyone here for all of your help

and

> > > support. I am new here and this group has been so much help to

> me.

> > I

> > > noticed a few people have mentioned some problems with sleep.

I

> am

> > > definitely having some sleep issues. My problem is that I

can't

> > stay

> > > awake. I sleep all night, all day, wake up for a few hours,

eat,

> > go

> > > back to sleep, and do it all over again. I sleep at work every

> day

> > > that I actually make it to work. Other times I sleep all night

> and

> > > all day, then I can't sleep that night. It makes it dificult

to

> go

> > > to work. Anyone else having these same problems?

> > >

> > > Another problem is that I've become depressed. I wasn't

depressed

> > > before becoming sick with EN. I don't always have lumps, but

it

> > > seems that I always have something going on, whether it is the

> > > lumps, being extremely tired, painful joints, severe back

pain,

> > foot

> > > pain, fever.....it always seems to be at least one of these

> > > symptoms. So I guess it seems that my flares don't have an

exact

> > > point when they start and stop. Does anyone else have this?

> > >

> > > One last thing....I have started to get these red bumps on my

> face

> > > that look kind of like pimples, but they hurt worse and they

feel

> > > much deeper than pimples. The skin on and around the bumps

start

> > to

> > > peel also. My face has never broken out with acne and it feels

> > > different than pimples. These bumps are only on my face. Any

> ideas?

> > > Thanks for listening and for your help.

> > >

> > >

> > >

> >

>