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Janine,

Please let us know what the ortho says on Monday. Hopefully it will

look better by then.

The swelling that you describe is normal. :-)

I'd still mention it to your ortho though. I'm sorry to hear Isabella

has a cold. I hope she gets well soon.

> Hi there

> Thanks for the responses on the skin chafing, the cortizone seems

to

> have helped although the skin on her forehead still looks a little

> wrinkly and is still a little discolored - like wind burn almost. I

> am going to call the orthotist first thing Monday if it doesn't

look

> better by then.

> Now a new question - we let Isabella sleep overnight in the helmet

> last night - she slept great - 7 to 6, usually she is up around 5 -

> but her right eye looked puffy and swollen this morning. I gave her

a

> couple of hours without the helmet and it looked better, so now she

> is napping in it. I did a search and found a couple of posts from

> another member mentioning swelling, but I am not sure if it was

> determined that this was normal or not? Isabella is still battling

a

> nasty cold so I am not sure what is from the cold and what is from

> the helmet! You would think after 8 months this whole parenting

thing

> would get easier, right ;-)? I guess I am just a naive first time

> mother!

> Anyway thanks for your help

> Janine & Isabella (banded 1/31/03 at 8 months)

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Janine:

Glad to hear how great Isabella slept in her band! Definitely check

with your ortho about the swelling on Monday, it is most likely the

" normal " swelling or fluid retention many babies get in their band,

but it's certainly something to ask your orthotist.

Let us know what they say.

Debbie Abby's mom DOCGrad

MI

p.s.....parenting only gets harder & harder!!~ LOL

>

> > Hi there

> > Thanks for the responses on the skin chafing, the cortizone seems

> to

> > have helped although the skin on her forehead still looks a little

> > wrinkly and is still a little discolored - like wind burn almost. I

> > am going to call the orthotist first thing Monday if it doesn't

> look

> > better by then.

> > Now a new question - we let Isabella sleep overnight in the helmet

> > last night - she slept great - 7 to 6, usually she is up around 5 -

> > but her right eye looked puffy and swollen this morning. I gave her

> a

> > couple of hours without the helmet and it looked better, so now she

> > is napping in it. I did a search and found a couple of posts from

> > another member mentioning swelling, but I am not sure if it was

> > determined that this was normal or not? Isabella is still battling

> a

> > nasty cold so I am not sure what is from the cold and what is from

> > the helmet! You would think after 8 months this whole parenting

> thing

> > would get easier, right ;-)? I guess I am just a naive first time

> > mother!

> > Anyway thanks for your help

> > Janine & Isabella (banded 1/31/03 at 8 months)

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  • 1 year later...

I might be odd. :-)

I had extremely intense pain at first, with very little to no swelling.

SOmetimes I would get swelling a few days after the pain, seems the pain level

and swelling had little relation to each other at times. My casual observation

is that whatever part of me hurt, it began to have a sort of pattern, and I

would have pain for 12 hours or so, gradually get some kind of swelling, over

the next 12 hours or so, then it would begin to subside. The cycle would seem

to complete within say 36 hours and begin somewhere else.

I also noticed something else. After the pain would begin to subside, if I

would take a warm bath, the spots that caused the most intense pain would turn

bright red in the bath!

Then I would also get this swelling with little pain - mostly in my wrists and

fingers that would first swell slightly, then discolor red or purple or black,

and it would stay that way for months. I " grew ridges " on top of both hands

near my wrists for over a year before MTX. They slowly went away after MTX

began. 2 fingers on each hand the middle knuckle on each also swelled and

turned black and stayed that way for over a year. They do this now from time to

time for a week or so and then it recedes again for a few weeks and then comes

back. Very odd.

- In , " lindajbelle " <lindajbelle@y...> wrote:

> Good morning,

>

> I am wondering how many people had pain before the swelling and how

> long it took before the swelling occured. I have all the pain and am

> on plaquenil but the swelling is not there, yet!. However sometimes

> my fingers feel very thick.

>

> Thanks

>

>

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This is similar to what happened to me, too...lots of pain with minor

swelling that kind of came and went. I've still never had

the " typical " RA swelling where your joints look really red and feel

hot. Most of my swelling has been in my fingers or wrist, or

sometimes just around one knuckle. And sometimes my rheumatologist

can see or feel swelling where I can't, like in my feet or elbow.

--- In , " dreamer_plus " <dreamer_plus@w...>

wrote:

>

> I might be odd. :-)

> I had extremely intense pain at first, with very little to no

swelling. SOmetimes I would get swelling a few days after the pain,

seems the pain level and swelling had little relation to each other

at times. My casual observation is that whatever part of me hurt, it

began to have a sort of pattern, and I would have pain for 12 hours

or so, gradually get some kind of swelling, over the next 12 hours or

so, then it would begin to subside. The cycle would seem to complete

within say 36 hours and begin somewhere else.

> I also noticed something else. After the pain would begin to

subside, if I would take a warm bath, the spots that caused the most

intense pain would turn bright red in the bath!

> Then I would also get this swelling with little pain - mostly in my

wrists and fingers that would first swell slightly, then discolor red

or purple or black, and it would stay that way for months. I " grew

ridges " on top of both hands near my wrists for over a year before

MTX. They slowly went away after MTX began. 2 fingers on each hand

the middle knuckle on each also swelled and turned black and stayed

that way for over a year. They do this now from time to time for a

week or so and then it recedes again for a few weeks and then comes

back. Very odd.

>

> - In , " lindajbelle " <lindajbelle@y...>

wrote:

> > Good morning,

> >

> > I am wondering how many people had pain before the swelling and

how

> > long it took before the swelling occured. I have all the pain and

am

> > on plaquenil but the swelling is not there, yet!. However

sometimes

> > my fingers feel very thick.

> >

> > Thanks

> >

> >

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I had pain first. I'm guessing some minor swellling started several

months later. Not that you could see it, but I would notice my shoes

were almost too tight to get on. The morning stiffness started even

after that. Because I've been on meds from the beginning, I've only

had a few times of really bad swelling and stiffness. It's always

been addressed quickly with increased meds or new meds. But I have

experienced enough to know that if I stopped my meds my whole body

would freeze up and I'd be in bed a lot.

--- In , " lindajbelle " <lindajbelle@y...>

wrote:

> Good morning,

>

> I am wondering how many people had pain before the swelling and how

> long it took before the swelling occured. I have all the pain and

am

> on plaquenil but the swelling is not there, yet!. However sometimes

> my fingers feel very thick.

>

> Thanks

>

>

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--- In , " lindajbelle " <lindajbelle@y...>

wrote:

> Good morning,

>

> I am wondering how many people had pain before the swelling and how

> long it took before the swelling occured. I have all the pain and

am

> on plaquenil but the swelling is not there, yet!. However sometimes

> my fingers feel very thick.

>

> Thanks

>

>

I never had much swelling. No heat or redness at all. Pain, yes.

Sierra

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Hi ,

As for your question about swelling:I felt pain in my hands 4 years ago and

told I was fine. 8 months ago was told I did have RA. I have been on Remicade

for 5 months and just quit it. Been on MTX for a month and last weekend for the

first time I had the fat swollen joints,with red and black and blue with sharp

stabbing pain. At first I thought I had hit my hand on something and bruised it

but by the end of the day my other fingers were the same and I couldnt bend my

hands to a fist.It was so painful to just lightly touch my knuckles. I have had

some bad pain before but not the swollen joints that you could see. My MRI

showed significant damage my rhuemy said but my blood work shows low

inflammation??? Its so hard to know and our bodies are so different. So I think

I have had RA for at least 5 years and now on meds I feel way worse symtoms or

it could also be that the RA has taken its time till now and just by chance has

hit full force after all this time. I sure hope the

swelling stays away for a while. Hope this helps. Take care Latisha

lindajbelle <lindajbelle@...> wrote:

Good morning,

I am wondering how many people had pain before the swelling and how

long it took before the swelling occured. I have all the pain and am

on plaquenil but the swelling is not there, yet!. However sometimes

my fingers feel very thick.

Thanks

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  • 1 year later...
  • 1 month later...
Guest guest

Yikes. The scientific word " torture " comes to mind......

Thanks for the reply --it really helps, especially in those

moments when i start wondering (again) if I'm just, I dunno, being a

big baby or something.

Lynda

> the thing where he squeezes my joints and sees how many hurt. There's a

> scientific name for that, but I can't remember...

>

>

>

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  • 1 year later...
Guest guest

Swelling is common. I never knew that the top of my feet were swollen until my

shoes felt tight and needed to buy deeper shoes. Last night I dislocated my toe

and when at the urgent care clinic, he was surprised that my feet and ankles

were more swollen because he said everyone he has seen that has CMT have very

swollen feet.

Jackie

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Guest guest

Kim.

Thanks! It is a pretty shade of purple and swollen and I have to use the scooter

in the house to get anything done, since I can't hop! It was so stupid and a

good reason why I should not do any more housecleaning! (LOL)

Stuff like this always happens when you have things planned and trying to get a

lot done, now I am forced to slow down.

Jackie

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Guest guest

Hello, it has been awhile since I have posted. Life had been extremely busy. I

have been trying to keep up with posts, but the board sure has been busy. I have

to say with this one, like most we get swelling. I hate looking at my foot

after a day of heavy walking, it's awful. Then if I twist my ankle of course it

is even worse.

Take care

(Ontario, Canada)

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