Trouble Sleeping

[Guest guest]

I used to sleep with my daughter. I do not know if it really helped her or

me. It hard when they hurt that bad. I never used the water bed but I heard

some people perfer it. Maybe a warm bath before bed would help. Good LUck

SHU

[Guest guest]

My daughter has recently started taking the methotrexate, she says she

can't really tell the difference yet. Her name is Suzanna diagonosed last

spring June 2000, she is 14. she also takes 800mg ibuprofen tid, she has a

waterbed and it seems to help her she says the warmth makes her feel better.

I really think it helps her maybe you should try a water bed. How long does

the methotrexate take to kick in? She also takes folic acid to help with the

mouth sores and stomach and she hasn't had any problem yet. Thank God. I

would appreciate any advice anyone has.

[Guest guest]

Pamela

i dont use the waterbed or any warmer maybe a heating pad for melissa

i have found that if the joint is wrapped with a ace bandage helps

this was the child dont get overly heated

but helps keep the joint warm

hot bath before bed is somewhat good if they can stand it

Robbin

[Guest guest]

hi

melissa was diagnosed 2000 also shes 13 soon to be 14 lololol

she has poly JRA

shes allergic to the ibuprofen and the asprin and tolectin

they have her on voltaren and flexaril and tylenol 3

right now but also started her on pamelor a week ago

she has missed 5 weeks of school so far in a row

the way i do if the bath dont help i will put a pillow under her legs

to raise them anything to get her to sleep

but since this flare she dont sleep the hours you would think

she cant get to sleep until 5am and sleeps til 2pm

this headache shes had for 5 weeks has something to do with it

Robbin

[Guest guest]

Robin

So sorry to hear is feeling so bad.Ask the Drs about Imuran. I am

not sure if it is asprin based, but it seens to help

Hugs for all of you

Marcie, s Mom

[Guest guest]

Pamela,

Sorry to hear your little guy is having trouble. Our daughter has

polyarticular JRA. When she has trouble we try a variety of things.

Chamomile tea is good. A long hot soak loosens her to be able to sleep.

Sometimes if she can tolerate it,a massage with lavender oil (warmed) is

good. Also my niece does Reflexology (massaging points on feet) that almost

always put her to sleep.Also,a friend has a baby with a heart condition,

when she has trouble sleeping they have someone come and perform " Reiki " ,

referred to as " the laying on of hands " they swear by it. We are going to

try it and see. Good luck.Let us know what works!

Amy

Trouble Sleeping

> Hello,

> I am hoping for any ideas on how to help my son sleep better during a

> flare. r has been miserable this week, barley being able to walk in

the

> evening. He cries off and on all night. He gets so stiff he can't move

and

> is just in pain. I am thinking about getting an electric mattress warmer.

> He is a very hot little boy anyway and always kicks off his blankets. I

> tried to keep in bundled up but when I go in he is pouring with sweat. We

> have resorted to just keeping the house hot at night but I wonder if I

could

> do more. Does any one use a waterbed? With a heater and having the warn

> water below him I wonder if the would help or just cause more grief.

> Anything could help at this point. We go in next week for an IV steroid

but

> we go threw this every couple months and it is just miserable for all of

us.

> I feel this group list is one of the best sources I have stumbled across

> and wish I found it sooner, Thanks,

> Pamela

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>

>

[Guest guest]

Hello,

Our daughter Alyssa is 15. Has had JRA for 2 years. We haven't tried a

waterbed. Sounds like that might be a good idea. Alyssa is on Methotrxate

as well. We really battled the mouth sores too. Is on folic acid now. One

thing that really helped was a mouth rinse. Its Lidocain & a little maalox.

She rinses her mouth a few times a day and it really helps. One word of

warning, the taste is really gross. Alyssa has not had any problems with it

other than mouth sores. It takes awhile for it to kick in. Hang in there.

Maybe your Suzanna would like to email Alyssa?

Let us know.

Amy

Original Message -----

From: <MCDOWKAM@...>

< >

Sent: Saturday, March 10, 2001 6:35 AM

Subject: Re: Trouble Sleeping

> My daughter has recently started taking the methotrexate, she says she

> can't really tell the difference yet. Her name is Suzanna diagonosed last

> spring June 2000, she is 14. she also takes 800mg ibuprofen tid, she

has a

> waterbed and it seems to help her she says the warmth makes her feel

better.

> I really think it helps her maybe you should try a water bed. How long

does

> the methotrexate take to kick in? She also takes folic acid to help with

the

> mouth sores and stomach and she hasn't had any problem yet. Thank God.

I

> would appreciate any advice anyone has.

>

>

>

>

>

[Guest guest]

hi pamela, i loved my water bed and am trying to get a new one. the warmth

was great, but the way the water caved in and cushioned all around me was

better. goodluck, brandy

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[Guest guest]

Hello Lori,

This sure does sound a lot like r. He is on all these medications

with the addition of Enbrel. Ky is a pretty calm little boy so I have never

noticed him to be hyper after his shot. We tried joint injections this fall

in his knees and wrists. At the time we decided to wait on his hips and

ankles because these were the worst. The procedure itself went great. I of

course was worried about how he would react to it and he did pretty good.

We had to be at the hospital early for pre-op, they went ahead and gave a

oxygen mask so Ky could play with it through out the day. He pretended he

was a space man and got comfortable with it. ALso our docs let us in the

room while he was put asleep. It only took a couple of minutes and he was

out. Then we came back and was there before he woke. He felt good

afterward, but for him it wore off after about 2 weeks. We have not tried it

again due to the results. The best thing we have found to work during a bad

flare is a steroid IV. The name is sodenmethal(I apologize I have no idea

how it is spelled). Ky gets it in a Iv form as out patient and we see

results the same day. This also last only a week or so, but not hard for us

to get. We have one schedule for Monday because just can't seemed to kick

this flare. I do wish you and your little guy the best. Thanks for the

blanket idea I am going to go look for one tomorrow.

Pamela

>From: babylamb@...

>Reply-

>

>Subject: trouble sleeping

>Date: Sat, 10 Mar 2001 16:51:39 -0000

>

>Something we've done and seems to help Jordan (systemic) 4 yr old, is

>a warm bath before bed, plus he sleeps with an electric blanket.

>This blanket has a " brain " and keeps his body heat in, it doesn't

>heat up to the touch like the old ones do. He's been alot better in

>the mornings since we've started this.

>

>He also started on methotrexate just last weekend being his first

>dose, 7.5 mg weekly. He didn't react to it as I had read some do,

>and my doctor told us it can take 6 - 8 weeks before you notice a

>difference. He was alot more hyper tho after taking it and I don't

>know if he's just having a good week or if the mtx had anything to do

>with it.

>

>He's also going for joint injections this month on his shoulders,

>elbows, wrists, hips, knees and ankles. So we're hoping for a

>miracle on this one, from the other moms I've talked to, they say

>these injections are amazing. Jordan is also on Folic Acid (he calls

>them his furry pills0, Zantac in liquid form which he hates, and

>indomethacin. Poor little guy is like a walking pharmacy!

>

>

>Hope this helped some

>

>Lori & Jordan (4yr old systemic)

>

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[Guest guest]

Hello,

Thank you for for letting me know about the waterbed. I am going to look

more into it. It was really hard for us to know weather or not the mthx was

working for Ky. We were told it could take 6-8 weeks to kick in. We tried

first the pill then the shot. Never seeing any major results. This fall

our doctor asked if we thought it was working and both myself and husband

replied at the same time no. We then took him off mthx and added arava.

This was in addition to Enbrel. This of course also took time to kick in.

A couple months later the weather changed and r got very bad. We

concluded that mthx did indeed help and had to wait another 6-8 weeks for to

kick back in. It is so hard knowing when you can't see the results right

away. Good Luck,

Pamela

>From: MCDOWKAM@...

>Reply-

>

>Subject: Re: Trouble Sleeping

>Date: Sat, 10 Mar 2001 09:35:05 EST

>

> My daughter has recently started taking the methotrexate, she says she

>can't really tell the difference yet. Her name is Suzanna diagonosed last

>spring June 2000, she is 14. she also takes 800mg ibuprofen tid, she has

>a

>waterbed and it seems to help her she says the warmth makes her feel

>better.

>I really think it helps her maybe you should try a water bed. How long

>does

>the methotrexate take to kick in? She also takes folic acid to help with

>the

>mouth sores and stomach and she hasn't had any problem yet. Thank God. I

>would appreciate any advice anyone has.

>

>

>

>

>

[Guest guest]

Hi Pamela:

Like r, our daughter Mickey had (still has sometimes) trouble sleeping.

Also, the nightly sweats and fevers made it seem like a heating blanket was

the wrong way to go (although homeopathic treatment advocates say that

treating a problem like fevers with more mild heat is exactly the right

thing to do, to a point).

What seemed to really help Mickey to turn a corner in this was to get a hot

tub (we were lucky and got a used one for much less than new price) and take

her in it whenever she got really stiff and sore. She was getting

physiotherapy in a heated tub, so we did gentle stretching and exercises in

the hot tub a few times a day and especially before bed. It seemed to really

help her feel better and sleep better. Sometimes I think our body's hurt

more from lack of use than anything! Good luck with r, it is hard on

everyone when our kids hurt too much to sleep. It's just so much harder to

stay " on top " of things and be positive when we're all struggling with lack

of sleep. Take time for YOU, too.

Lynn

> From: " Pamela Reagan " <pcflyn@...>

> Reply-

> Date: Sat, 10 Mar 2001 08:51:50 -0000

>

> Subject: Trouble Sleeping

>

> Hello,

> I am hoping for any ideas on how to help my son sleep better during a

> flare. r has been miserable this week, barley being able to walk in the

> evening. He cries off and on all night. He gets so stiff he can't move and

> is just in pain. I am thinking about getting an electric mattress warmer.

> He is a very hot little boy anyway and always kicks off his blankets. I

> tried to keep in bundled up but when I go in he is pouring with sweat. We

> have resorted to just keeping the house hot at night but I wonder if I could

> do more. Does any one use a waterbed? With a heater and having the warn

> water below him I wonder if the would help or just cause more grief.

> Anything could help at this point. We go in next week for an IV steroid but

> we go threw this every couple months and it is just miserable for all of us.

> I feel this group list is one of the best sources I have stumbled across

> and wish I found it sooner, Thanks,

> Pamela

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Hi Pamela:

The first time Mickey had joint injections (she was 3), the doctor forgot to

tell us how VERY important it was to keep her weight completely off the

injected joints for at least 24 hours afterward, and 48 is better. The meds

can be 'squished' back out of the joint by the child's weight. That first

time, the effect (which had been to me, miraculous. she hadn't even walked

in weeks, let alone ran and played and I cried for joy when I saw her

running around like she used to again. I cried in sorrow when by 5 days, she

was back to limping and having fevers) only lasted 5 days. Since then, after

numerous joint injections, we keep her off her feet, and from using her

wrists - for at least 48 hours and the effects (relief from joint pain and

swelling) last for 3-6 months. Her R hip and L knee are the worst joints for

her, they have been injected the most now. Also, ankles, wrists, other hip

and elbows. Each time is different, but almost always knee and hip.

Lynn

> From: " Pamela Reagan " <pcflyn@...>

> Reply-

> Date: Sun, 11 Mar 2001 08:41:40 -0000

>

> Subject: Re: trouble sleeping

>

> Hello Lori,

> This sure does sound a lot like r. He is on all these medications

> with the addition of Enbrel. Ky is a pretty calm little boy so I have never

> noticed him to be hyper after his shot. We tried joint injections this fall

> in his knees and wrists. At the time we decided to wait on his hips and

> ankles because these were the worst. The procedure itself went great. I of

> course was worried about how he would react to it and he did pretty good.

> We had to be at the hospital early for pre-op, they went ahead and gave a

> oxygen mask so Ky could play with it through out the day. He pretended he

> was a space man and got comfortable with it. ALso our docs let us in the

> room while he was put asleep. It only took a couple of minutes and he was

> out. Then we came back and was there before he woke. He felt good

> afterward, but for him it wore off after about 2 weeks. We have not tried it

> again due to the results. The best thing we have found to work during a bad

> flare is a steroid IV. The name is sodenmethal(I apologize I have no idea

> how it is spelled). Ky gets it in a Iv form as out patient and we see

> results the same day. This also last only a week or so, but not hard for us

> to get. We have one schedule for Monday because just can't seemed to kick

> this flare. I do wish you and your little guy the best. Thanks for the

> blanket idea I am going to go look for one tomorrow.

> Pamela

>

>

>> From: babylamb@...

>> Reply-

>>

>> Subject: trouble sleeping

>> Date: Sat, 10 Mar 2001 16:51:39 -0000

>>

>> Something we've done and seems to help Jordan (systemic) 4 yr old, is

>> a warm bath before bed, plus he sleeps with an electric blanket.

>> This blanket has a " brain " and keeps his body heat in, it doesn't

>> heat up to the touch like the old ones do. He's been alot better in

>> the mornings since we've started this.

>>

>> He also started on methotrexate just last weekend being his first

>> dose, 7.5 mg weekly. He didn't react to it as I had read some do,

>> and my doctor told us it can take 6 - 8 weeks before you notice a

>> difference. He was alot more hyper tho after taking it and I don't

>> know if he's just having a good week or if the mtx had anything to do

>> with it.

>>

>> He's also going for joint injections this month on his shoulders,

>> elbows, wrists, hips, knees and ankles. So we're hoping for a

>> miracle on this one, from the other moms I've talked to, they say

>> these injections are amazing. Jordan is also on Folic Acid (he calls

>> them his furry pills0, Zantac in liquid form which he hates, and

>> indomethacin. Poor little guy is like a walking pharmacy!

>>

>>

>> Hope this helped some

>>

>> Lori & Jordan (4yr old systemic)

>>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at http://explorer.msn.com

>

>

>

> To manage your subscription settings, please visit:

>

>

> For links to websites about JRA:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

i haven't slept right for almost 2 yrs since i first became ill. i am about ready to ask for something to put me out because it doesn't seem like it is going to change.i have no regular sleep schedule at all.just a couple of hours here and there.

Greg

TX

[Guest guest]

Hi Ann,

Since I have been on the Predinisone I cannot sleep w/o sleeping

pills. The Dr. ordered the weakest ones-by taking one, I can get

approx. 5hrs. sleep. By taking 2, I can get 8 hrs. sleep. The only

thing I don't like about this is that they are in the valium family.

Without the sleeping pills , at best I get 1-2 hrs sleep a day. I am

just wondering what will happen when I start the Imuran. Will I be

able to sleep at all?

Joanna

AIH 8/01

> Do any of you have trouble sleeping. I feel tired but am very

restless during the night. I managed to get to see the meteor shower

early this morning. Did anyone else get to see them. IT was really

neat.

>

> AnnGet more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Joanna, I wish I could tell you that it's the Imuran that keeps me awake, but I can't I take too many other meds for my stomach so I have no idea what's keeping me awake. I may get a couple of good sleeping hours in a night, the rest is tossing and turning. I go to work and feel like I'm going to fall asleep at my computer. Thank God no ones in the office with me. Some days I feel as if I need a booster shot to get going. With the holidays coming I'll probably need that shot . Ann [ ] Re: trouble sleeping Hi Ann,Since I have been on the Predinisone I cannot sleep w/o sleepingpills. The Dr. ordered the weakest ones-by taking one, I can getapprox. 5hrs. sleep. By taking 2, I can get 8 hrs. sleep. The onlything I don't like about this is that they are in the valium family.Without the sleeping pills , at best I get 1-2 hrs sleep a day. I amjust wondering what will happen when I start the Imuran. Will I beable to sleep at all?JoannaAIH 8/01> Do any of you have trouble sleeping. I feel tired but am veryrestless during the night. I managed to get to see the meteor showerearly this morning. Did anyone else get to see them. IT was reallyneat.>> AnnGet more from the Web. FREE MSN Explorer download :http://explorer.msn.com

[Guest guest]

Greg. What meds are you on? Trying to figure out if it's the meds we take or the disease itself. Re: [ ] trouble sleeping i haven't slept right for almost 2 yrs since i first became ill. i am about ready to ask for something to put me out because it doesn't seem like it is going to change.i have no regular sleep schedule at all.just a couple of hours here and there.GregTX

[Guest guest]

I don't know if this is the case for everyone, but I

seem to be sleeping alot better since I started the

Imuran. And even better since I went to 100mg.

Unfortunately, I seem to get really tired around 4 or

5 and fight the sleepiness all evening. Not sure, if

it's from the meds or the disease.

Bethanne

AIH 9/01

__________________________________________________

[Guest guest]

In a message dated 11/18/01 7:51:05 PM Pacific Standard Time, seafarer52@... writes:

Do any of you have trouble sleeping. I feel tired but am very restless during the night. I managed to get to see the meteor shower early this morning. Did anyone else get to see them. IT was really neat.

Ann

YES!!!!!! me too Ann.......awful time sleeping.........

because of......pain....cramps....insomia......!!!!!

but at the same time extremely tired......

Just makes me feel terrible......so I take over the counter drugs......to help with the sleeping......not sure if I am supposed to though........can't get into the darn doc...missed the meteor shower....I was disappointed.. :-((((

Take care...

with hugs....

Bert. (AIH DX 9/01)

[Guest guest]

In a message dated 11/18/01 11:48:30 PM Pacific Standard Time, kgreg777@... writes:

i haven't slept right for almost 2 yrs since i first became ill. i am about ready to ask for something to put me out because it doesn't seem like it is going to change.i have no regular sleep schedule at all.just a couple of hours here and there.

Greg

Hi Greg....my name is Bert. short for Bertha.....

I too have trouble sleeping..........actually its been a few years since I've had a good nights rest......

.......maybe you caould try meditation.....

ocean sounds tapes.....

and maybe light exercise before bed......for me a hot shower or bath works .....occassionally.......

Take care....

With hugs.....

Bert. (AIH DX 9/01)

[Guest guest]

Try exercise about 4 hours before you want to sleep. Exercise right before

bed could rev you up.

Shireen

>From: sunshinedotson@...

>Reply-

>

>Subject: Re: [ ] trouble sleeping

>Date: Mon, 19 Nov 2001 14:44:14 EST

>

>In a message dated 11/18/01 11:48:30 PM Pacific Standard Time,

>kgreg777@... writes:

>

>

> > i haven't slept right for almost 2 yrs since i first became ill. i am

>about

> > ready to ask for something to put me out because it doesn't seem like it

>is

> > going to change.i have no regular sleep schedule at all.just a couple of

> > hours here and there.

> >

> > Greg

> >

>

>Hi Greg....my name is Bert. short for Bertha.....

>I too have trouble sleeping..........actually its been a few years since

>I've

>had a good nights rest......

>......maybe you caould try meditation.....

>ocean sounds tapes.....

>and maybe light exercise before bed......for me a hot shower or bath works

>.....occassionally.......

>Take care....

>With hugs.....

>Bert. (AIH DX 9/01)

_________________________________________________________________

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[Guest guest]

In a message dated 11/18/01 7:50:54 PM Pacific Standard Time, seafarer52@... writes:

Do any of you have trouble sleeping. I feel tired but am very restless during the night. I managed to get to see the meteor shower early this morning. Did anyone else get to see them. IT was really neat.

Ann

Lack of sleep is a common problem, perhaps due to the Prednisone. I sleep very, very heavily, however. Yes, I saw the meteor shower; we spent the weekend in a house near the Pacific and napped on the couch with an alarm set. At one a.m. my husband, daughter, and I walked down to the beach and spent two hours staring at the sky and shouting, "ooh, ooh, ooh" as the meteors flew by. At some point, looking for comfortable positions, we wound up inadvertently playing "hah-hah." That's a child's game where a group of kids lie with their heads on each others stomachs. One child says "hah." The next says "hah hah." Pretty soon everyone is laughing uncontrollably. It was a very good time.

Harper

[Guest guest]

In a message dated 11/19/01 4:44:38 AM Pacific Standard Time, bamrand@... writes:

I don't know if this is the case for everyone, but I

seem to be sleeping alot better since I started the

Imuran. And even better since I went to 100mg. Unfortunately, I seem to get really tired around 4 or

5 and fight the sleepiness all evening. Not sure, if

it's from the meds or the disease.

Bethanne

AIH 9/01

Most reference books and many doctors recommend a nap or naps during the day. I find that helps a great deal.

Harper

[Guest guest]

the only meds. i take are propranolol and mephyton for portal hypertension

Greg

TX

[Guest guest]

I'll give it a try. Thanks Re: [ ] trouble sleeping>Date: Mon, 19 Nov 2001 14:44:14 EST>>In a message dated 11/18/01 11:48:30 PM Pacific Standard Time,>kgreg777@... writes:>>> > i haven't slept right for almost 2 yrs since i first became ill. i am>about> > ready to ask for something to put me out because it doesn't seem like it>is> > going to change.i have no regular sleep schedule at all.just a couple of> > hours here and there.> >> > Greg> >>>Hi Greg....my name is Bert. short for Bertha.....>I too have trouble sleeping..........actually its been a few years since>I've>had a good nights rest......>......maybe you caould try meditation.....>ocean sounds tapes.....>and maybe light exercise before bed......for me a hot shower or bath works>.....occassionally.......>Take care....>With hugs.....>Bert. (AIH DX 9/01)_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

I don't like taking over the counter stuff. I don't want to do anymore damage than I already have. I know aspirin is out. It would be in your best interest to check with your dr. before you take over the counter stuff. Re: [ ] trouble sleeping In a message dated 11/18/01 7:51:05 PM Pacific Standard Time, seafarer52@... writes: Do any of you have trouble sleeping. I feel tired but am very restless during the night. I managed to get to see the meteor shower early this morning. Did anyone else get to see them. IT was really neat.AnnYES!!!!!! me too Ann.......awful time sleeping.........because of......pain....cramps....insomia......!!!!!but at the same time extremely tired......Just makes me feel terrible......so I take over the counter drugs......to help with the sleeping......not sure if I am supposed to though........can't get into the darn doc...missed the meteor shower....I was disappointed.. :-((((Take care...with hugs....Bert. (AIH DX 9/01)