Re: New and wanted to talk about sleep problems

[Guest guest]

> First I would like to welcome you to the group, I have sleep

problems too but I have Fribo, has your dr. every took you that you

might have Fribo too? I take sleep meds to help me sleep they don't

work too well. I am sure someone here can be of more help take care

Janet IN IL

> I just joined this group last week and have enjoyed reading so far

> (makes you feel better knowing that there are people out there that

> can understand what you are going through - especially when family

> and work just don't get it).

>

> > I'm still kind of groggy this morning but I haven't fallen asleep

> yet and I haven't taken my provigil. But I can feel it come on so I

> better go take it!

>

> Am I the only one with this issue????

>

[Guest guest]

I have a different sleep problem. I can't sleep. I am so tired all the time, I

can't do anything. I have a cough that wakes me up when I do get to sleep and

then sometimes I can't sleep at all. It is just not comfortable to lie down.

I have always had problems sleeping, and do not need a lot of sleep. I just

need some sleep! The cough is not the cause of my not sleeping, it just wakes

me up sometimes. I just can't go to sleep. Sometimes I get up and sit for a

couple of hours or more, before I go back to bed. I toss and turn too much

trying to go to sleep and I don't want to disturb my husband's sleeping, so I

get up. (I do a lot of jigsaw puzzles in the middle of the night.)

Does anyone have Alopecia Areata? I have had bouts with it since the mid '80s.

One time I lost most of my hair, my front/bongs was the only thing left. I had

treatment, steroid shots in my head, but decided to just handle it. The shots

were just too much. I have had several different episodes with alopecia areata

and last year, I found another spot, then a couple more. This was before I was

diagnosed with RA. I still have one spot in the back, but it is growing in. I

just can't color my hair or get perms until they are gone.

I am on Methotrexate and Predisone along with Folic Acid. I have only been on

Methotrexate for about a month. With high doses of Predisone, the cough went

away....... almost. I am now on lower doses of Predisone and it is back. My

Doctor's appointment is not until October. I do have some blood work coming up

later this week or early next week. All in all, I think I am doing better,

except the cough and not sleeping, the pain is bearable and I take a lot of

Jacuzzi baths. Just too tired to do anything.

Someone mentioned Hops, I was wondering how you use that, is it a herb pill, tea

or what? Looking into getting some lavender to make some more micro-heat pads,

which by the way I use field corn and I like it better than rice.

Thanks for all the support that this group provides.

And thanks for reading.

Skeeter

[ ] New and wanted to talk about sleep problems

.

[Guest guest]

Hi Skeeter:

I have had problems with sleep too, as has everyone

here I know, because of our pain. I would ask your

doctor for a sleep study - perhaps you are

experiencing apnea, or some other problems that are

waking you up and keeping you from getting the sleep

you need. Also, I take Ambien CR at bedtime and it

has helped quite a bit in allowing me to get to sleep,

and sleep through the night the majority of the time.

I do wake up sometimes because of leg pain, but just

change position, and am able to go back to sleep.

Maybe it or another sleep med could be helpful to you.

When you don't get good sleep, stress builds up, and

causes more pain and fatigue. Get the sleep under

control and you will probably feel much better. Call

your doctor and ask - no reason you should suffer

until your next appointment when there are meds

available to help you.

Take care -

Kathe in CA

--- Skeeter Fine Crafts <skeeter@...> wrote:

> I have a different sleep problem. I can't sleep. I

> am so tired all the time, I can't do anything. I

> have a cough that wakes me up when I do get to sleep

> and then sometimes I can't sleep at all. It is

> just not comfortable to lie down.

>

> I have always had problems sleeping, and do not need

> a lot of sleep. I just need some sleep! The cough

> is not the cause of my not sleeping, it just wakes

> me up sometimes. I just can't go to sleep.

> Sometimes I get up and sit for a couple of hours or

> more, before I go back to bed. I toss and turn too

> much trying to go to sleep and I don't want to

> disturb my husband's sleeping, so I get up. (I do

> a lot of jigsaw puzzles in the middle of the night.)

>

> Does anyone have Alopecia Areata? I have had bouts

> with it since the mid '80s. One time I lost most of

> my hair, my front/bongs was the only thing left. I

> had treatment, steroid shots in my head, but decided

> to just handle it. The shots were just too much. I

> have had several different episodes with alopecia

> areata and last year, I found another spot, then a

> couple more. This was before I was diagnosed with

> RA. I still have one spot in the back, but it is

> growing in. I just can't color my hair or get perms

> until they are gone.

>

> I am on Methotrexate and Predisone along with Folic

> Acid. I have only been on Methotrexate for about a

> month. With high doses of Predisone, the cough went

> away....... almost. I am now on lower doses of

> Predisone and it is back. My Doctor's appointment

> is not until October. I do have some blood work

> coming up later this week or early next week. All

> in all, I think I am doing better, except the cough

> and not sleeping, the pain is bearable and I take a

> lot of Jacuzzi baths. Just too tired to do

> anything.

>

> Someone mentioned Hops, I was wondering how you use

> that, is it a herb pill, tea or what? Looking into

> getting some lavender to make some more micro-heat

> pads, which by the way I use field corn and I like

> it better than rice.

>

> Thanks for all the support that this group provides.

> And thanks for reading.

>

> Skeeter

>

>

> [ ] New and wanted to talk about

> sleep problems

>

>

> .

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi :

Sleep problems are common in patients with chronic

pain, so, no, you are definately not alone in your

quest for sleep. I had a sleep study done, was dx

with obstructive sleep apnea, and put on a CPAP

machine. It really helps with my breathing. I am

surprised that a CPAP was not also prescribed for you

because of all the arousals you had during sleep - did

they try it during the sleep study? I also take Ambien

CR and Zanaflex at night and that is what really helps

with the sleep. Zanaflex is a muscle relaxant. I

have fibro as well as RA and take quite a few meds!

But it gives me a quality of life that I need. Talk

with your doctor about other medications if the Xyrem

does not help you.

I hope today is a better one for you - take care -

Kathe in CA

--- <sdavis19@...> wrote:

> I just joined this group last week and have enjoyed

> reading so far

> (makes you feel better knowing that there are people

> out there that

> can understand what you are going through -

> especially when family

> and work just don't get it).

>

>

>

> I am looking for anyone who has a similar issue and

> has taken Xyrem.

> I still took about 15 minutes or so to fall asleep

> (all the material

> said you would almost be knocked out immediately).

> Did the

> medication keep you alseep all night or did you wake

> up several

> times throughout the night?

>

> I'm still kind of groggy this morning but I haven't

> fallen asleep

> yet and I haven't taken my provigil. But I can feel

> it come on so I

> better go take it!

>

> Am I the only one with this issue????

>

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

Hey Kathe!

I did have the sleep study done but the arounsals where not apnea

arousals - I didn't stop breathing. It was some other type of

arousal (I can't remember the technical term). So the CPAP machine

would not solve the problem since I did not stop breathing.

The Xyrem is just so scary! But hopefully it will start working. We

will see!

I've never been told that I had fibro although it is a possibility.

I hate adding more and more list of issues to my already long list

so I haven't talked to my rheumy about it!!!

Thanks for everyones input. It makes me feel better.

>

> > I just joined this group last week and have enjoyed

> > reading so far

> > (makes you feel better knowing that there are people

> > out there that

> > can understand what you are going through -

> > especially when family

> > and work just don't get it).

> >

> >

> >

> > I am looking for anyone who has a similar issue and

> > has taken Xyrem.

> > I still took about 15 minutes or so to fall asleep

> > (all the material

> > said you would almost be knocked out immediately).

> > Did the

> > medication keep you alseep all night or did you wake

> > up several

> > times throughout the night?

> >

> > I'm still kind of groggy this morning but I haven't

> > fallen asleep

> > yet and I haven't taken my provigil. But I can feel

> > it come on so I

> > better go take it!

> >

> > Am I the only one with this issue????

> >

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

I, too, have sleep problems and had a sleep study done with my results

very similiar to yours. The results did show that I have restless legs

syndrom and my PCD prescribed Lycria to help with that as well as the

shaking I was having in my hands. It has helps with the shaking, but I

still have problems with sleeping. No matter what time I go to bed I

am constantly waking up with leg cramps or some other kind of pain.

Leg cramps or spasms are what happen most. I get up walk around a

little and come play on the computer or come here to this group. After

being up for a while I then can go back to sleep for a while.

This is getting old and hope my neurologist will have some more ideas

as sometimes the spasms, etc. are so bad or just can't get to sleep

that I don't sleep at all. Fortunately that doesn't happen often. I

no longer do the things I used to enjoy just because of my lack of

sleep.

[Guest guest]

Welcome to our group. Sorry you are here because of your RA, but please feel

welcome with this group, we understand.

I am very interested in your fatigue problems. I have been diagnosed with RA,

Colligeous Colitis and Hypothyroid 3 years ago. Yes, I have stiffness every

morning, sometimes I hurt in one joint or the other and sometimes I hurt

everywhere. I'm on Humira injections and Methotrexate weekly for the RA. My

LARGE concern is my fatigue!!. I had a job where I could come home during the

day and take a nap for 2 1/2 hours. That really kept me going, I would come home

at 7 pm, eat dinner, and basically go to bed to start over again the next

morning at 6:30am. That worked until my schedule was changed and I had to work

from 7:30am until 6:30pm + if necessary with a short break during the day. The

homes in my area went so high in price (andria, VA) 3X's what I'd paid 14

years before that I decided to sell and move to an area where housing wasn't as

expensive. I'm in Florence, SC, great place. Instead of a 3 level townhouse

where I went up and down stairs daily, I have a ranch, brick home with 3

bedrooms. I truly love my house, but this fatigue is still really hurting me.

I've always been outgoing, but I haven't really met anyone in the 3 months I've

lived here. Fatigue and not caring is the reason. I have planned on going to

many activity I see in the newspaper, but when it comes down to it, I stay at

home. I don't feel lonely, but I know I need to make some friends and get out

some. I know I need some help, not sure where to get it. I have been in unusual

pain since last Thursday. My new RA took me off Methotrexate 6 weeks ago and I

believe it has just caught up with me. I took the Methotrexate last night,

though I know it will take a while to begin to work. I had actually hoped

without the Methotrexate, my fatigue would improve, didn't happen. I also take

an injection on Humira weekly and I don't believe that is causing the fatigue. I

am afraid to stop that biological because of the damage RA will cause to your

joints and the biologicals are suppose to really slow down that process. I had

an Aunt that just died before last Christmas with RA. She had been unable to

feed herself, go to the bathroom alone, dress herself, write anything, for the

last 6 years. I don't want to go there. I can put up with the fatigue if that

what it takes to not become like my Aunt Dot, but If this fatigue isn't really

necessary and I could go back to school, volunteer or become an active member of

society, I would be VERY interested in how I could do that. Any comments would

be appreciated.

Colleen

[Guest guest]

I have problems going to sleep and staying asleep, but they are

definitely pain related. When I am relatively more comfortable, I

fall asleep early, and sleep like I've been knocked over the head.

Since getting RA, I have much less stamina than I used to have in

general, and require MUCH more sleep. If I don't get it, like you,

I am half asleep all day long. Generally, I'm in bed by 8:00 most

nights and sleep until 6:00 AM. Then I need a nap at some point

during the afternoon.

If my schedule doesn't allow that much sleep for a day or two, I can

grind through. But if I don't arrange to make it up before too

long, I'm in real trouble. Likewise, if the pain is bad enough that

I can't sleep, I'm toast the next day.

>

> I just joined this group last week and have enjoyed reading so far

> (makes you feel better knowing that there are people out there

that

> can understand what you are going through - especially when family

> and work just don't get it).

>

> I was diagnosed with RA about a year and a half ago. I was

> immediately put on methotrexate along with an NSAID. Since then,

> I've added Paxil (anger and depression issues along with an

already

> determined before RA case of Social Anxiety Disorder), Folic Acid,

> Provigil, Singulair (for allergies to prevent my constant sinus

> infections), and most recently Xyrem (GHB).

>

> My biggest issue isn't so much the pain. I live with it and hobble

> along at times. This biggest issue is the fatigue. I was so bad

that

> I was concerneed just to drive to work for fear of falling asleep

at

> the wheel. When I would get to work, I would doze in and out in

> front of my computer so many times a day. My efficieny was near 0!

> Luckily, I have worked for the company for 10 years and have paid

my

> dues so they have been extremely nice about the situation. So I am

> extremely lucky there because most employers would have said bye-

bye.

>

> My rheumy reffered me to a lung doctor for a sleep study. I did

the

> overnight and daytime studies - only to rule out sleep apnea and

> narcolespy. However, I did have 77 unexplained arousals (from a

> deeper sleep stage to a lighter sleep stage) throughout the night

> and I never went into the highest level of deep sleep. My rheumy

> said this could be explained by certain medications (which he

didn't

> see any of my meds that could be causing the issue) or severe

> disease. So his analysis was that the RA was causing my sleep

> issues. He mentioned two ways to treat and started me on one

> immediately - Provigil to help with my daytime sleepiness. It has

> been my miracle drug - helped with my extreme fatigue and has

lessen

> the amount of times I fall asleep during the day to mostly zero

> (some days I'm still a little groggy). It has also helped with my

> concentration a good bit so I was able to be a more productive

> employee.

>

> When I went back to him for a check-up, we discussed further

> treatment options because the provigil is just a fix so I won't

fall

> asleep during the day - it doesn't solve the root of the poor

sleep

> issue. So last night, I started Xyrem (GHB - aka the date rape

> drug).

>

> I am looking for anyone who has a similar issue and has taken

Xyrem.

> I still took about 15 minutes or so to fall asleep (all the

material

> said you would almost be knocked out immediately). Did the

> medication keep you alseep all night or did you wake up several

> times throughout the night?

>

> I'm still kind of groggy this morning but I haven't fallen asleep

> yet and I haven't taken my provigil. But I can feel it come on so

I

> better go take it!

>

> Am I the only one with this issue????

>

[Guest guest]

Hi,

I am mainly a lurker here, but I wanted to respond, because I am sure

there are very few people with Alopecia Areata...not exactly a common

disease. I have had it since I was 4, went totalis when I was 20. It

was a very emotionally trying disease as a child and teenager. It has

been easier to cope since I went totalis and wear a custom wig. When

I was trying to hide spots, it was horrible. I was so insecure.

For those of you who don't know - Alopecia Totalis is complete

baldness of the head. Alopecia areata, totalis, and universalis (no

body hair) are also autoimmune disorders, where the immune system

thinks your hair follicles are outside intruders.

I am on my way to universalis - I lost my eyebrows when the rest of my

head hair fell out when I was in college. I've had some tatood on,

because eyeliner was so messy. I still have my eyelashes (thank God),

and armpit hair, and just a bit of hair " down there " . I have not

shaved my legs in many years...just some baby fine hair in a few areas

around my knees...not enough for anyone to ever notice. I have no

hair on my arms either.

I feel like I finally got a handle on coping with the stress of

Alopecia...then I started getting myself in shape, lost some weight,

was working out...then bam! enter RA. Next month makes a year since I

had my first symptoms. It seems to be really aggressive, too.

This group has been a big help to me as I sift through all the info to

prepare for my first visit to a rheummy tomorrow. I am hoping for a

good one. Wish me luck!

Christie

--- In , " Skeeter Fine Crafts " <skeeter@...>

wrote:

>

> Does anyone have Alopecia Areata? I have had bouts with it since

the mid '80s. One time I lost most of my hair, my front/bongs was the

only thing left. I had treatment, steroid shots in my head, but

decided to just handle it. The shots were just too much. I have had

several different episodes with alopecia areata and last year, I found

another spot, then a couple more. This was before I was diagnosed

with RA. I still have one spot in the back, but it is growing in. I

just can't color my hair or get perms until they are gone.

>