RE: pain as the day goes on

[Guest guest]

It is amazing how fast pain and swelling can set in with Stills disease.

One minute I'm walking OK, then next I'm limping, and can't wait to find a

chair or bed to crawl into.

And sometimes food causes me intense systemic burning pain ( especially fast

food).

And it is cyclical ( although some meds disrupt the cycle or timing of

onset.)

This is something about Stills that I don't think many doctors understand.

You can see them at 1:00 PM, and not be too bad off, but at 1:45, when you

get home, you can really be hurting, and by 7pm, you are bedridden. A 5-10

minute office visit is often worthless in assessing ones pain and

inflammation with this disease. And when you do see them during a flare,

they get all excited as if you suddenly are going downhill, yet to you, it

is an everyday occurrence. I was tossed in the hospital directly from my

doctors office once, because I had a late appointment, and He finally saw

how ill I (always) was in the evening. When I told him it happened every

day, He didn't really believe me. But my wife was there that time because I

was too ill to drive, and She told him the same thing. Only then, did He

finally " get it " .

The same goes for my fever and rash. It was rarely present before 2 PM, but

by 8 pm, I was covered with it. Every day for years. Yet when I read my

medical records, a few doctors stated the rash was " intermittent and

fleeting " .

The only thing intermittent was the timing of my doctor appointment.

This is why is so important to keep a journal, and to present it to your

doctor in a such a way that He/She will fully comprehend or understand.

Also, taking some with you that knows of your condition on a daily basis can

really be helpful. Doctors may not believe you, but they almost always

believe an observer.

-Brent

pain as the day goes on

Quick question, does anyone really tend to swell or inflame very quickly as

soon as they sit down? I very much notice that as soon as I get off of my

feet for about ten minutes or longer, this is when my pain really starts.

It is as simple as getting in my car for the half hour of lunch that I have,

driving to a restaurant and having lunch, and by the time I get up, I can

hardly walk, and when I get in my car to drive home and get out 20 minutes

later, I am to start with the pain again and increase as the night goes on.

If I sit, say finally around 7:30 at night, and I mean, this is really the

first time all day, because I am on my feet ALL DAY LONG on cement floors, I

am really doomed, the pain becomes highly difficult to deal with and I have

to sometimes get help to get off of the sofa and I can hardly walk up the

stairs. Now, this pain is bad, but it really strikes me if I lie in bed and

then get up about a half hour later. This is when I feel tremendous pain

and walk like a 90 year old lady. I tend to " hunch " up, take baby steps and

cannot walk. This is the fun time when I tend to " swear " a lot......thank

goodness that the kids are in bed!!! Is this all familiar to everyone here,

or is this more so because I don't have proper meds yet? I am also very bad

in the morning, it takes a while to move, but I must say that the pain that

I encounter in the evening is the worse of this disease. Thanks.

Love, Sue #2

[Guest guest]

Yes, I've had that happen many times. It has something to do with the abdominal

aorta (big BIG blood vessel). When you sit the circulation is compromised in

the lower half of your body. For me, sometimes I think it's the meds, but

sometimes it happens without the meds - just when I'm flaring. The fluid will

then " pool " in your lower extremities which makes them swell. Laying down flat

and elevating your feet will help. However, even when I've done that it still

doesn't always work and sometimes then I end up with a lot of fluid in the chest

and throat. I've even woken up the next morning with facial swelling on

whatever side I was lying on. They gave me all kinds of diuretics and even gave

me an IV push (literally the fastest way to get any drug into your system) of

Lasix (the most popular diuretic). The expected me to start " peeing like a

horse. " Well, guess what...my body didn't give up a centimeter of fluid.

Actually it wasn't until later when they gave me prednisone that the swelling

went down. I don't completely understand the physiologic mechanics of it all,

but Stills finds a way to confuse EVERYONE!

Hang in there! Try staying somewhere cooler. Warmer air will keep the fluid in

the cells.

I know how painful it is. You're not alone and it will end! Sit in a cool bath

and see if that helps. Sorry, I wish I had more answers.

Jul

pain as the day goes on

Quick question, does anyone really tend to swell or inflame very quickly as

soon as they sit down? I very much notice that as soon as I get off of my feet

for about ten minutes or longer, this is when my pain really starts. It is as

simple as getting in my car for the half hour of lunch that I have, driving to a

restaurant and having lunch, and by the time I get up, I can hardly walk, and

when I get in my car to drive home and get out 20 minutes later, I am to start

with the pain again and increase as the night goes on. If I sit, say finally

around 7:30 at night, and I mean, this is really the first time all day, because

I am on my feet ALL DAY LONG on cement floors, I am really doomed, the pain

becomes highly difficult to deal with and I have to sometimes get help to get

off of the sofa and I can hardly walk up the stairs. Now, this pain is bad, but

it really strikes me if I lie in bed and then get up about a half hour later.

This is when I feel tremendous pain and walk like a 90 year old lady. I tend to

" hunch " up, take baby steps and cannot walk. This is the fun time when I tend

to " swear " a lot......thank goodness that the kids are in bed!!! Is this all

familiar to everyone here, or is this more so because I don't have proper meds

yet? I am also very bad in the morning, it takes a while to move, but I must

say that the pain that I encounter in the evening is the worse of this disease.

Thanks.

Love, Sue #2

[Guest guest]

Boy this is something I thought was just me and you are right go to

doc. okay later not to good later still now doing very bad I want

nothing but vicoden and to be left alone and lord if someone touches me

to rub my legs or arms (the wife likes to do this she thinks it will

help) it just starts to hurt even more it's like do not touch or even

look like you are thinking about it but then in a few hours back to

normal or as much as the dragon well let us be ( never was a normal

person so may be when the kill the dragon they can make me normal just

to see what it is like lol) ya all have a pain free night and keep the

dragon at bay

Marty G.

[Guest guest]

Sue

My worst pain was in the evenings for a long time. Lots of swelling in the

right ankle too. I couldn't wait for the boys to go to bed so that I could

(pretty much the same now, but without the severe pain & swelling!) I am worn

out by 9:00 -- even when i get a nap in the afternoons. As far as those

cement floors go, I suggest some New Balance shoes and if not that -- you

should surely try some Dr. Scholl's insoles. I have a few pairs of insoles

and they help lots.

Thanks so much for the birthday wishes (my kids have forgotten). Last

night I took my mom out to dinner. (Mmmmm) Tonight is " Girl's Night " out.

Just wish I could hear the President tonight. Guess I will record him.

Tomorrow night, Tim is taking me somewhere. He asked if he should plan it all

or if I wanted to. I told him to plan everything and if I didn't like it then

we'd change to my ideas! (Hee hee hee). He said " Oh, just like always then? "

I have NO IDEA what we will do. On Sat. my best-est friend, , is taking

me out to dinner at Red Lobster. I figure I will gain 10 lbs. w/o that 5

gallons of ice cream!!!!! Love to ya, Girl. --Sue

[Guest guest]

Dear Sue and Brent,

You both are so right. I experience the same problems. Sue I think that

when you are on the right meds, hopefully the pain and swelling won't be so

severe.

I am the same way. My symptoms come and go all day long. The mornings and

evenings are the worst for me. It is the nature of this disease.

Brent Thanks for the wonderful advice. My Doc thinks my disease is pretty

controlled right now. I don't. The reason is that I have some joints that

almost always hurt. These are my joints that have permanent damage.

When my disease is active most of my other joints start hurting. I am more

tired than usual etc... etc...

Maybe if I keep a daily journal of my symptoms I can convince my Doc that my

disease still isn't as controlled as it should be.

Both of you are in my thoughts and prayers.

Love,

jatw@...

pain as the day goes on

>

>

> Quick question, does anyone really tend to swell or inflame very quickly

as

> soon as they sit down? I very much notice that as soon as I get off of my

> feet for about ten minutes or longer, this is when my pain really starts.

> It is as simple as getting in my car for the half hour of lunch that I

have,

> driving to a restaurant and having lunch, and by the time I get up, I can

> hardly walk, and when I get in my car to drive home and get out 20 minutes

> later, I am to start with the pain again and increase as the night goes

on.

> If I sit, say finally around 7:30 at night, and I mean, this is really the

> first time all day, because I am on my feet ALL DAY LONG on cement floors,

I

> am really doomed, the pain becomes highly difficult to deal with and I

have

> to sometimes get help to get off of the sofa and I can hardly walk up the

> stairs. Now, this pain is bad, but it really strikes me if I lie in bed

and

> then get up about a half hour later. This is when I feel tremendous pain

> and walk like a 90 year old lady. I tend to " hunch " up, take baby steps

and

> cannot walk. This is the fun time when I tend to " swear " a lot......thank

> goodness that the kids are in bed!!! Is this all familiar to everyone

here,

> or is this more so because I don't have proper meds yet? I am also very

bad

> in the morning, it takes a while to move, but I must say that the pain

that

> I encounter in the evening is the worse of this disease. Thanks.

> Love, Sue #2

>

>

>

[Guest guest]

This is the main reason so many people (even friends) do *not* understand

our disease..or even at times " wonder " if we are really ill. They may have

thoughts like this... " either he/she is sick or they aren't, this feeling

okay and

then in a little while sick again?..how can that be? " But, that is just the

way

it is with Stills. I have called it a Yo-yo disease because it is so up and

down.

Although I don't swell and pain when I sit down like Sue does, I can be

feeling

pretty good for several hours and then just like that ..wham! There have

been

times when I myself wonder " how can this be?..feel good, then don't..feel

good,

then don't..?? "

So many times..I wake up feeling so terrible. Severe pain all over, and

sick, sick

sick. My husband and I may have had plans to go somewhere...we cancelled..

and then by afternoon..a miracle! I'm feeling much better! Enough to drive a

person nuts!!

Tricia

pain as the day goes on

>

>

> Quick question, does anyone really tend to swell or inflame very quickly

as

> soon as they sit down? I very much notice that as soon as I get off of my

> feet for about ten minutes or longer, this is when my pain really starts.

> It is as simple as getting in my car for the half hour of lunch that I

have,

> driving to a restaurant and having lunch, and by the time I get up, I can

> hardly walk, and when I get in my car to drive home and get out 20 minutes

> later, I am to start with the pain again and increase as the night goes

on.

> If I sit, say finally around 7:30 at night, and I mean, this is really the

> first time all day, because I am on my feet ALL DAY LONG on cement floors,

I

> am really doomed, the pain becomes highly difficult to deal with and I

have

> to sometimes get help to get off of the sofa and I can hardly walk up the

> stairs. Now, this pain is bad, but it really strikes me if I lie in bed

and

> then get up about a half hour later. This is when I feel tremendous pain

> and walk like a 90 year old lady. I tend to " hunch " up, take baby steps

and

> cannot walk. This is the fun time when I tend to " swear " a lot......thank

> goodness that the kids are in bed!!! Is this all familiar to everyone

here,

> or is this more so because I don't have proper meds yet? I am also very

bad

> in the morning, it takes a while to move, but I must say that the pain

that

> I encounter in the evening is the worse of this disease. Thanks.

> Love, Sue #2

>

>

>

[Guest guest]

Brent, this was a great letter, mirrored my very own thoughts. I like

your idea of keeping a journal, I believe I will try that, thanks,

Louise.

brent wrote:

>

> It is amazing how fast pain and swelling can set in with Stills disease.

> One minute I'm walking OK, then next I'm limping, and can't wait to find a

> chair or bed to crawl into.

>

> And sometimes food causes me intense systemic burning pain ( especially fast

> food).

>

> And it is cyclical ( although some meds disrupt the cycle or timing of

> onset.)

>

> This is something about Stills that I don't think many doctors understand.

> You can see them at 1:00 PM, and not be too bad off, but at 1:45, when you

> get home, you can really be hurting, and by 7pm, you are bedridden. A 5-10

> minute office visit is often worthless in assessing ones pain and

> inflammation with this disease. And when you do see them during a flare,

> they get all excited as if you suddenly are going downhill, yet to you, it

> is an everyday occurrence. I was tossed in the hospital directly from my

> doctors office once, because I had a late appointment, and He finally saw

> how ill I (always) was in the evening. When I told him it happened every

> day, He didn't really believe me. But my wife was there that time because I

> was too ill to drive, and She told him the same thing. Only then, did He

> finally " get it " .

>

> The same goes for my fever and rash. It was rarely present before 2 PM, but

> by 8 pm, I was covered with it. Every day for years. Yet when I read my

> medical records, a few doctors stated the rash was " intermittent and

> fleeting " .

> The only thing intermittent was the timing of my doctor appointment.

>

> This is why is so important to keep a journal, and to present it to your

> doctor in a such a way that He/She will fully comprehend or understand.

> Also, taking some with you that knows of your condition on a daily basis can

> really be helpful. Doctors may not believe you, but they almost always

> believe an observer.

>

> -Brent

>

> pain as the day goes on

>

> Quick question, does anyone really tend to swell or inflame very quickly as

> soon as they sit down? I very much notice that as soon as I get off of my

> feet for about ten minutes or longer, this is when my pain really starts.

> It is as simple as getting in my car for the half hour of lunch that I have,

> driving to a restaurant and having lunch, and by the time I get up, I can

> hardly walk, and when I get in my car to drive home and get out 20 minutes

> later, I am to start with the pain again and increase as the night goes on.

> If I sit, say finally around 7:30 at night, and I mean, this is really the

> first time all day, because I am on my feet ALL DAY LONG on cement floors, I

> am really doomed, the pain becomes highly difficult to deal with and I have

> to sometimes get help to get off of the sofa and I can hardly walk up the

> stairs. Now, this pain is bad, but it really strikes me if I lie in bed and

> then get up about a half hour later. This is when I feel tremendous pain

> and walk like a 90 year old lady. I tend to " hunch " up, take baby steps and

> cannot walk. This is the fun time when I tend to " swear " a lot......thank

> goodness that the kids are in bed!!! Is this all familiar to everyone here,

> or is this more so because I don't have proper meds yet? I am also very bad

> in the morning, it takes a while to move, but I must say that the pain that

> I encounter in the evening is the worse of this disease. Thanks.

> Love, Sue #2

>

>

[Guest guest]

To Everyone that responded to my quick question this morning as pain seems

to go on through the day, thank you very much. I very much appreciated

everyone's input. Since I am not on medication yet, and will hopefully be

by next Thursday, I get very confused. Brent, I will definitely start

keeping a journal. I started to in the past, but gave up, but will do it

again. Thank you to everyone! Much love,

Love, Sue #2