Re: Cold Weather = Pain

[Guest guest]

Hi Group-- I've begun a 2nd screen name (Mommytme2) so that all my JRA emails

go there. Easier to keep things in order this way.

The last few days have been hard on Ashli. Her medicated remission lasted

about 4 months and very thankful for that. The warmer weather from our

summer played a big part. Yesterday she woke up with a very painful leg.

This time the pain was different than ever before. Thought if I wrote all of

you, you could help me understand better.

Ashli said the pain was from her hip to her knee, on the right leg where the

arthritis first started. She described the pain as the most painful " 10 " .

She limped when walking, couldn't straighten leg or put much weight on it.

No obvious swelling or redness (which is usually the case with Ashli). By

time she came home from the school she was visably worse. She was suppose to

have ballet, but even after dinner and her motrin and plaquenil; she wasn't

any better. What mainly confuses me is the pain wasn't in her hip or knee,

more in between. Hurt to touch (which she use to have often and doctors

related this to the tightness in her muscles). Now after school her upper

leg did feel warmer than the left. At bedtime last night her leg was feeling

better, but her stomach started hurting. Thinking it might be from the

increase in plaquenil (2 at dinner everyother day and started yesterday).

Maybe I shouldn't give both at the same time?) NOW...this morning leg pain

down to an " 8 " , but now her left upper arm/elbow hurt. Gave her a long, hot

shower and morning motrin and pain level went down a little. But after

breakfast and motrin (about 15 minutes) she complained of stomach hurting

again. Sent her to school and worried every since. Have stayed off phone,

to see if the school needs to call.

Thanks for listening, many times this group has helped keep me sane!

God Bless,

Sandi A. (Ashli's mom)

[Guest guest]

Sandi

i can feel what your going through

melissa started hurting in her back nov 5th i think we had a ped rhuemy

appt nov 7th so i just did hot baths and heating pad

didnt seem to work the pain level was 7

we get to the rhuemy shes 5 pain level

the rhuemy says its a pulled muscle no big deal

cause her back is weak lower part of her back

she tells us to continue the excersises that it would get better

we did but melissa missed the next day at school

ok i am calm not to much worried at this time

pulled muscle takes a few days

by that night at midnight i was on the phone to this dr

melissa had sharp pains on her butt the dr said it was the sciatic nerve

and muscle spasms to ice it and she would be ok

the next day she gets up and goes to school

she does ok this weekend and goes to school monday

she was so happy she finished the day 8 am to 5pm the afterschool tutorial

went great she signed up for the speaker class also and the principal

informed me she had recommended melissa for the top 10 program GREAT

melissa is doing great

later that night she says her back was hurting again she took a bath

went on to sleep woke up and she cant get off the bed shes flat on her back

i let her sleep in no school tuesday i went in and started her PT her

muscles were tight in her legs and her ankle looked odd but no pain there

she was ok unless i touched her sore spots

no unusual swelling no fever

later she got up and walked around kinda stiff but walked it out

she sat and talked with me and started asking mom why do i hurt so bad

i said well hon this JRA just dont like this cold spell we are haveing

she laughed i asked her if she hurt anywhere other than the back she said

no

but when she walked the back of her ankle hurt

i told her to do some work from her books

so she didnt get behind she said i will but i want to get my clothes ready

for school tomorrow she did

i thought she was feeling better she could get a good nights sleep and get

to school

boy does it change

last night she starts with her back both sides

shes complaing shes hurting bad 8 on the scale

so i lay down with her i fell asleep off and on but this child never went to

sleep til

5am this morning my hubby said

i get up and wake her at 7am and she says mom please just let me sleep i am

comfortable

shes on her side and i check her legs and ankles for warmth and swelling

feels ok so i let her sleep till 7 30am go check her to get up for school

i rolled her on to her back and she let out a scream

i knew then something aint right so i checked her legs again and her right

leg

was no problem but her left leg she couldnt straighten it her hip was

hurting and she said mom i am hurting BAD a 10 so i said honey i am takeing

you to the ER

now so i try and dress her and noticed her side was alittle swelled

but she said mom its not the joint the knee or hip its my muscles it hurts

bad

so i started rubbing her legs she couldnt stand that

i got her up walking and she said mom i cant lay on my back at all thats

why i couldnt sleep

her left ankle was turned out but walking ok

i got her to the ER and they checked her out and called her rhuemy

the rhuemy said do a urine check for infection

and the ER dr said well the rhuemy said to get her to excersise and she will

be ok

no infection in her urine i looked at that dr and said is that ALL yall

can do and she said yes that JRA is treated with excersise mostly and

since its a muscle it needs to be stretched

so the ER visit was no good

melissa walked out and the nurse stopped me and said you mean the doctor

didnt give her anything i said no and she said look at her walking shes

limping

shes hurting i said thats why i brought her here to the ER

well now this child is still hurting and leaning to one side tonight

the muscle hurts its pulling her to one side and shes limping this is so

fustrateing now

i know that JRA is joint and muscular

from what i heard the muscle acts up when the bone is stressed

and spasms if this is true then melissas joints are acting up and the

muscles are really mad

its 10 30 and shes still up not sleepy but tired she also said the

moveing the knee makes her weak well ihave to go and do PT again or try on

her and see if i can get her to sleep

let yall know what happens

its bad when she thinks if she goes to sleep she will hurt when she wakes up

Robbin

[Guest guest]

hi sandi a, i can relate to your daughter. i have been hurting too and to

tell you the truth, i dont think i'm used to it anymore. i thrive in summer

and even with having my shoulder done early this year, its been quite a

while since i hurt like this. things hurt for no reason, real bad,

something different everyday. the last time i felt like this was last

winter. almost a whole year!! can you imagine, thats excellent for me. i

am really starting to hate winter, brandy

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[Guest guest]

Sandie-

I have no helpful insight, but I hope Ashli is feeling better soon. I'd get

her into the doctor's office asap.

Diane

[Guest guest]

Robbin- Couldn't they at least give her a muscle relaxant? Maybe not with

her other meds - but how frustrating for you. Your story brought tears to my

eyes. There is nothing worse than seeing your child in this pain and the

doctors being so dimissive as if its nothing !! I hope and pray she is

feeling better soon. Michele

Re: Cold Weather = Pain

Sandi

i can feel what your going through

melissa started hurting in her back nov 5th i think we had a ped rhuemy

appt nov 7th so i just did hot baths and heating pad

didnt seem to work the pain level was 7

we get to the rhuemy shes 5 pain level

the rhuemy says its a pulled muscle no big deal

cause her back is weak lower part of her back

she tells us to continue the excersises that it would get better

we did but melissa missed the next day at school

ok i am calm not to much worried at this time

pulled muscle takes a few days

by that night at midnight i was on the phone to this dr

melissa had sharp pains on her butt the dr said it was the sciatic nerve

and muscle spasms to ice it and she would be ok

the next day she gets up and goes to school

she does ok this weekend and goes to school monday

she was so happy she finished the day 8 am to 5pm the afterschool

tutorial

went great she signed up for the speaker class also and the principal

informed me she had recommended melissa for the top 10 program GREAT

melissa is doing great

later that night she says her back was hurting again she took a bath

went on to sleep woke up and she cant get off the bed shes flat on her

back

i let her sleep in no school tuesday i went in and started her PT her

muscles were tight in her legs and her ankle looked odd but no pain there

she was ok unless i touched her sore spots

no unusual swelling no fever

later she got up and walked around kinda stiff but walked it out

she sat and talked with me and started asking mom why do i hurt so bad

i said well hon this JRA just dont like this cold spell we are haveing

she laughed i asked her if she hurt anywhere other than the back she said

no

but when she walked the back of her ankle hurt

i told her to do some work from her books

so she didnt get behind she said i will but i want to get my clothes ready

for school tomorrow she did

i thought she was feeling better she could get a good nights sleep and get

to school

boy does it change

last night she starts with her back both sides

shes complaing shes hurting bad 8 on the scale

so i lay down with her i fell asleep off and on but this child never went

to

sleep til

5am this morning my hubby said

i get up and wake her at 7am and she says mom please just let me sleep i am

comfortable

shes on her side and i check her legs and ankles for warmth and swelling

feels ok so i let her sleep till 7 30am go check her to get up for school

i rolled her on to her back and she let out a scream

i knew then something aint right so i checked her legs again and her right

leg

was no problem but her left leg she couldnt straighten it her hip was

hurting and she said mom i am hurting BAD a 10 so i said honey i am

takeing

you to the ER

now so i try and dress her and noticed her side was alittle swelled

but she said mom its not the joint the knee or hip its my muscles it

hurts

bad

so i started rubbing her legs she couldnt stand that

i got her up walking and she said mom i cant lay on my back at all thats

why i couldnt sleep

her left ankle was turned out but walking ok

i got her to the ER and they checked her out and called her rhuemy

the rhuemy said do a urine check for infection

and the ER dr said well the rhuemy said to get her to excersise and she

will

be ok

no infection in her urine i looked at that dr and said is that ALL yall

can do and she said yes that JRA is treated with excersise mostly and

since its a muscle it needs to be stretched

so the ER visit was no good

melissa walked out and the nurse stopped me and said you mean the doctor

didnt give her anything i said no and she said look at her walking shes

limping

shes hurting i said thats why i brought her here to the ER

well now this child is still hurting and leaning to one side tonight

the muscle hurts its pulling her to one side and shes limping this is so

fustrateing now

i know that JRA is joint and muscular

from what i heard the muscle acts up when the bone is stressed

and spasms if this is true then melissas joints are acting up and the

muscles are really mad

its 10 30 and shes still up not sleepy but tired she also said the

moveing the knee makes her weak well ihave to go and do PT again or try on

her and see if i can get her to sleep

let yall know what happens

its bad when she thinks if she goes to sleep she will hurt when she wakes up

Robbin

For links to websites with JRA info please visit:

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

To manage your subscription settings, visit:

subscribe/

[Guest guest]

To Sandi and Robin,

It must be that time of year when are children feel the effects

from the cold weather or something. Even though here in Florida the

lows at night are around 50 degrees. That feels cold for us.

My daughter is going through the same thing. She has

been off the Prednisone now for 12 days, and that is probably the

reason her knee is flaring so bad. Everything else on her body is

feeling fine, but for the last week every night her knee sweels up so

bad and feels all spongey. Well last night was the worst yet. A

friend invited her over and she asked me to drive her there cause she

couldent ride her bike. (The friend lives across the street.) I told

her I would pick her up in 1 hour. Well half an hour later she calls

me to come get her that the pain is really bad. It took forever for

me to get her back in the car, then out again, in the house and to

the recliner for her to sit down. She cried the whole time. Then this

is something that never has happened before. About every ten minutes

she would scream and cry cause she felt a pressure in her knee, like

someone was squeezing it even though it was still. I didnt know what

to do to help her.

Finally my husband came home and carried her into the jaquzzi

with her clothes on and put her in. He went in with her and help her

to loosen up her leg. It did help, she was bending it back and forth

in the water.

After that he carried her to bed. This morning she was still

limping but she said it felt better. I let her take her time getting

ready and signed her in late for school, with a note saying no P.E

today. Thinking maybe to much activity is making it worse.

Today my husband is going to call the Rheumy to ask her what to

do, we dont want to go back on the prednisone so I think are next

step is to do the steroid injections in the knee. So my husband is

going to set up the appointment today. Since her knee seems to be the

only joint effected right now I think this is the way to go, to

prevent her from going on any more meds right now. She takes 2

indocins a day and her methotrexte once a week. (and folic acid )

I know I have read that some kids on this list has had the

injections done and its like a miracle to see the pain go away. I

know it suppose to last about 6 months. If anyone can reassure me

about this and let me know there opinions i would appreciate it .

Are there any side effects to it and were your children but to sleep,

and for how long , how did they feel afterward? Sorry for all the

questions I just want to be prepared.

Thanks in advance, B

P.S. Sandi and Robin I hope your daughters will be doing better real

soon.

> Hi Group-- I've begun a 2nd screen name (Mommytme2) so that all my

JRA emails

> go there. Easier to keep things in order this way.

>

> The last few days have been hard on Ashli. Her medicated remission

lasted

> about 4 months and very thankful for that. The warmer weather from

our

> summer played a big part. Yesterday she woke up with a very

painful leg.

> This time the pain was different than ever before. Thought if I

wrote all of

> you, you could help me understand better.

>

> Ashli said the pain was from her hip to her knee, on the right leg

where the

> arthritis first started. She described the pain as the most

painful " 10 " .

> She limped when walking, couldn't straighten leg or put much weight

on it.

> No obvious swelling or redness (which is usually the case with

Ashli). By

> time she came home from the school she was visably worse. She was

suppose to

> have ballet, but even after dinner and her motrin and plaquenil;

she wasn't

> any better. What mainly confuses me is the pain wasn't in her hip

or knee,

> more in between. Hurt to touch (which she use to have often and

doctors

> related this to the tightness in her muscles). Now after school

her upper

> leg did feel warmer than the left. At bedtime last night her leg

was feeling

> better, but her stomach started hurting. Thinking it might be from

the

> increase in plaquenil (2 at dinner everyother day and started

yesterday).

> Maybe I shouldn't give both at the same time?) NOW...this morning

leg pain

> down to an " 8 " , but now her left upper arm/elbow hurt. Gave her a

long, hot

> shower and morning motrin and pain level went down a little. But

after

> breakfast and motrin (about 15 minutes) she complained of stomach

hurting

> again. Sent her to school and worried every since. Have stayed

off phone,

> to see if the school needs to call.

>

> Thanks for listening, many times this group has helped keep me sane!

>

> God Bless,

> Sandi A. (Ashli's mom)

[Guest guest]

My daughter has had several injections over the years; although not

recently. It does seem to loosen the joint up a bit and make it relatively

pain free. I don't know if 6 months is how long it lasts...it didn't seem

like it but I know it did help for several months.

She was not put to sleep. They did put a pain killing solution on the

area to be injected (for the life of me I can't remember what it was it was

like elms or emsl or eslm something like that maybe another parent can tell

you the exact thing.)

On the last injection two nurses plus myself had to hold her down or

rather still. I had her blow my bangs for breathing. To be perfectly

honest I think she (my daughter) would do anything to keep from having the

shot...She really didn't have any pain following the injections but it did

take her a while to be consoled. She was eight at the time.

I don't believe my daughter to be that squeamish or overdramatic. In

fact when she has her blood drawn she tells them what needle works best

where it works best and watches them as they insert the needle and draw.

Since the age of four the worse she has done is said ouwie ouwie ouwie in a

normal voice (no screaming) and that is when they have been digging around

for a vein with the needle.

I'm not saying not to have the injection; as it does seem to help; but

you asked to be prepared. Maybe Meghann has had some hard experiences with

this and others have not and if so I'm sure they will post.

Sharon and Meghann

JRA and PRS

> I know I have read that some kids on this list has had the

> injections done and its like a miracle to see the pain go away. I

> know it suppose to last about 6 months. If anyone can reassure me

> about this and let me know there opinions i would appreciate it .

> Are there any side effects to it and were your children but to sleep,

> and for how long , how did they feel afterward? Sorry for all the

> questions I just want to be prepared.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

> > Hi Group-- I've begun a 2nd screen name (Mommytme2) so that all my

> JRA emails

> > go there. Easier to keep things in order this way.

> >

> > The last few days have been hard on Ashli. Her medicated remission

> lasted

> > about 4 months and very thankful for that. The warmer weather from

> our

> > summer played a big part. Yesterday she woke up with a very

> painful leg.

> > This time the pain was different than ever before. Thought if I

> wrote all of

> > you, you could help me understand better.

> >

> > Ashli said the pain was from her hip to her knee, on the right leg

> where the

> > arthritis first started. She described the pain as the most

> painful " 10 " .

> > She limped when walking, couldn't straighten leg or put much weight

> on it.

> > No obvious swelling or redness (which is usually the case with

> Ashli). By

> > time she came home from the school she was visably worse. She was

> suppose to

> > have ballet, but even after dinner and her motrin and plaquenil;

> she wasn't

> > any better. What mainly confuses me is the pain wasn't in her hip

> or knee,

> > more in between. Hurt to touch (which she use to have often and

> doctors

> > related this to the tightness in her muscles). Now after school

> her upper

> > leg did feel warmer than the left. At bedtime last night her leg

> was feeling

> > better, but her stomach started hurting. Thinking it might be from

> the

> > increase in plaquenil (2 at dinner everyother day and started

> yesterday).

> > Maybe I shouldn't give both at the same time?) NOW...this morning

> leg pain

> > down to an " 8 " , but now her left upper arm/elbow hurt. Gave her a

> long, hot

> > shower and morning motrin and pain level went down a little. But

> after

> > breakfast and motrin (about 15 minutes) she complained of stomach

> hurting

> > again. Sent her to school and worried every since. Have stayed

> off phone,

> > to see if the school needs to call.

> >

> > Thanks for listening, many times this group has helped keep me sane!

> >

> > God Bless,

> > Sandi A. (Ashli's mom)

>

>

>

> For links to websites with JRA info please visit:

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

>

> To manage your subscription settings, visit:

> subscribe/

>

[Guest guest]

My daughter just had her knee injected two weeks ago. The effect is

miraculous. Her knee now has practically no swelling and is almost totally

straight. It was significantly contracted before. I still notice she favors

the other leg somewhat, but the injection definitely helped alot. is

only 19 months. Of course, the injection was scary for her. Her knee was

numbed first with an EMLA patch. I think what really scared her was being

held down and not knowing what was going on. She cried, but it wasn't as bad

as I thought it would be. She calmed down pretty quickly. I was nervous

about the injection. I read it could cause a part of the bone to die. Of

course, you always worry about worst case scenarios. But so far so good.

Hope all goes well for you, too. Here's hoping it lasts!!!

Diane

[Guest guest]

When they injected my daughter knne-The results were wonderful and there were

no side efffects. Good Luck SHU

[Guest guest]

i am with meghan, i was 18 and it hurt like, well you can imagine. it was

not successfull, they couldnt do it so i dont know anything bout the

benefits. it was not because of me that they couldnt do it, i ven lt them

try twice, and even with emla cream, it was painful. maybe you could ask

for an injected local anaesthetic to help becuase i have heard that they do

help greatly also, goodluck, brandy

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[Guest guest]

hi michelle

melissa is doing better now she did get the muscle relaxant

and the dr changed her med around she did get to school today

and will start PT again

Robbin