Hello

[Guest guest]

Wow Kirk;

It is really good to hear from you but so sorry things are still so bad. I'm

not a doctor but I would think maybe your heals hurting might be nerve related?

I so hope they don't give up on you because you need help so badly. Please

don't be a total stranger because we worry for you and miss your explatives,

lol. There have been many times where I have invisioned stabbing a doctor in

the hand over and over and telling him maybe then he would understand.

Hang in there friend, we are here. Hugs,

Hello

I just wanted to drop in and say hello to everyone. I have been feeling a

lot better than I was as recently as last month, but I am still suffering with

tons of pain and the likes.

I do have one question for anyone who may have an idea...... Whenever I am

on my feet for two hours or longer, the backs of my feet hurt so badly that I

can't put any weight on them. They will continue to hurt for hours and don't

feel better until I am off of them for 3-4 hours. They will even hurt if I am

sitting with my feet on the floor. I have had them x-rayed and that showed

nothing. None of my Dr's seem to have any ideas, but I need a damn answer as the

pain is brutal at times. When I go to bed I usually wake up due to them

throbbing or being totally numb.

I have not been on too much recently and probably won't be a regular for a

while as my PC is heading south, and the money for a new one isn't in the budget

right now.

I have been diagnosed with another thing, sleep apnea/Narcolepsy. Hell, I

wonder what else comes with this package??? I now get to wear a damn mask to

bed, but I still wake up 2-4 times per night and rarely feel like I have slept

well at all.

I am scheduling an appointment with the headache center in Philly as soon

as I can muster up the $415.00 " consultation fee " that insurance doesn't cover.

I love that SH#@!!!! I can't wait for a diagnosis as the Neurologist I have had

the last few hospitalizations finally gave up and stated he believes I am

" imagining " the headaches that I have had since all of this started. I guess I

have the rare ability to make my eyes swell almost totally shut!!! That bastard

better hope that we don't cross paths for quite awhile, as I intend on nailing

him with a barrage of fists until he can't stand the pain....and then telling

him that he is wrong, there isn't any actual pain, it is all in his imagination.

Later, Kirk.

[Guest guest]

*Hi Kirk,*

*I am sorry that you are not doing well. It is always something, huh?*

*As for the foot pain, seek another opinion, another Neuro. You are*

*going through the same thing I am. It is nerve related. And my strong*

*advice is seek another Dr. *

*I hope that things will improve for you so you can start to feel better

with the foot pain.*

*Not only do I have pain then I get this weird numbish feeling in my right

foot. The only thing I can do to help it is a heat pad and no

movement--easier said than done!*

*I hope you find this helpful and stick up for yourself. You knnow how you

feel. The Dr's can only guess.*

*, Oregon*

>

> I just wanted to drop in and say hello to everyone. I have been feeling

> a lot better than I was as recently as last month, but I am still suffering

> with tons of pain and the likes.

>

> I am scheduling an appointment with the headache center in Philly as

> soon as I can muster up the $415.00 " consultation fee " that insurance

> doesn't cover. I love that SH#@!!!! I can't wait for a diagnosis as the

> Neurologist I have had the last few hospitalizations finally gave up and

> stated he believes I am " imagining " the headaches that I have had since all

> of this started. I guess I have the rare ability to make my eyes swell

> almost totally shut!!! That bastard better hope that we don't cross paths

> for quite awhile, as I intend on nailing him with a barrage of fists until

> he can't stand the pain....and then telling him that he is wrong, there

> isn't any actual pain, it is all in his imagination.

> Later, Kirk.

>

> ------------------------------

>

--

SPEEDY :-)

" Love endures all things. "

[Guest guest]

You wrote:

*I hope you find this helpful and stick up for yourself. You know how you

feel. The Dr's can only guess.*

*, Oregon*

Trust me, the Dr's I have seen since know exactly how I feel about this

******* MORONS idea that I am somehow " creating the pain " from the headaches I

get. Too bad I never saw this Cranium after he gave my other Dr's his

" highly educated " (with at least a Kindergarten education, imho)) opinion.

I have no choice but to follow up on the foot pain as I am severely limited

in what I can do because of it.

I wanted to start walking so I can drop all of the excess lbs my body has

accumulated since I became sick, but can only go 100-200 yards before the pain

becomes unbearable.

Later, Kirk

[Guest guest]

Hey, Kirk, it's good to hear from you! I've never had the problem with my

heels, but three weeks ago, I was diagnosed with Sleep Apnea as well. Mine's not

sever enough to require the mask, but I am taking Provigil which helps with the

daytime sleepiness and I do rest better at night.

Take care and keep in touch when you can...

Gail

Kirk Bonanny wrote:

I just wanted to drop in and say hello to everyone. I have been feeling a

lot better than I was as recently as last month, but I am still suffering with

tons of pain and the likes.

I do have one question for anyone who may have an idea...... Whenever I am on

my feet for two hours or longer, the backs of my feet hurt so badly that I can't

put any weight on them. They will continue to hurt for hours and don't feel

better until I am off of them for 3-4 hours. They will even hurt if I am sitting

with my feet on the floor. I have had them x-rayed and that showed nothing.

I have been diagnosed with another thing, sleep apnea/Narcolepsy. Hell, I

wonder what else comes with this package??? I now get to wear a damn mask to

bed, but I still wake up 2-4 times per night and rarely feel like I have slept

well at all.

Visit me, your Kay Independent Beauty Consultant (10% of your order will be

donated to the International Still's Disease Foundation)

http://www.marykay.com/glmurphy

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1 & cent;/min.

[Guest guest]

Hey Kirk,

Look at the bright side of things........ at least you can sit in a boat and

whack bass all day!

Re: Hello

You wrote:

*I hope you find this helpful and stick up for yourself. You know how you

feel. The Dr's can only guess.*

*, Oregon*

Trust me, the Dr's I have seen since know exactly how I feel about this

******* MORONS idea that I am somehow " creating the pain " from the headaches I

get. Too bad I never saw this Cranium after he gave my other Dr's his

" highly educated " (with at least a Kindergarten education, imho)) opinion.

I have no choice but to follow up on the foot pain as I am severely limited

in what I can do because of it.

I wanted to start walking so I can drop all of the excess lbs my body has

accumulated since I became sick, but can only go 100-200 yards before the pain

becomes unbearable.

Later, Kirk

[Guest guest]

I keep thinking like that Brett, but most of the lakes near me still have ice

around the damn shores!

Besides, I had every intention of totally redesigning my boat over the winter

but was either in the " resort " or unable to move. It needs more storage, new

carpeting etc... I need to move the batteries to the front to balance it out as

there is too much weight in the stern at this time, which isn't what you want

with a jet outboard. I need to make it run in 2-3 " of water instead of the 5 " I

need now as I can't get to my spots for tournaments when the river gets low.

Have a good one, Kirk

[Guest guest]

Thanks for the offers from those who offered to " donate " some money.... I

greatly appreciate it but can't accept it at this time as I have the ability to

pay for it, but hate touching what is left of my savings account.

Thanks again!! Kirk

[Guest guest]

Hi Kirk I had something similar with my heels and so did my brother who has

polymyalgia rheumatica( mostly muscles ) Anyway our doctors said it was

plantar fasciitis. It took about 3 months for it to go away, I took

Nsaids,,,helped a little, Not sure if this is the same thing. It was worse in

the morning.

Hang in there Liz

[Guest guest]

Hi Kirk... How are you feeling?

Been thinking of you.

Tracilyn

[Guest guest]

I am doing a little better Tracilyn.... Sorry for the delay, but I haven't

been online for some time now.

I am going crazy trying to figure out how the hell I am supposed to live on

disability and figure out which damn co-insurance and prescription plan I need

for Medicare....driving me fu****** NUTS!!!!!

Hope you are doing well, Kirk.

[Guest guest]

Welcome again Judite. It's Melt here. I take methotrexate and I think that is

what you are asking about? I have very little problems with it. Now I have

some mouth sores but I was feeling worse a couple of months ago and my doctor

raised the dosage to 15mg a day and I feel better. Occasionally I get nausiated

but not often and some others take the shot form to help with the side affects.

Good luck and welcome again to our family here. Melt

[Guest guest]

Judite,

I'm happy you found us so you can have friends with the same disease

as you have. Your English is just fine! If you'd like to speak in

Spanish, we do have a few members that are able to communicate with

you, including o who is a Spanish-only speaking member.

Regarding methotrexate, most of us have to add it to prednisone or

other medications we are on to have some luck with controlling the

Stills. It does take a while to work, so give it some time, and

just note how you feel each day. You may or may not have side

effects from it. I did not have any side effects for awhile on it

and then they developed later.

What is good is that the doctors did know what Stills was and how to

treat you. This group will be a great source of information for you

so you can help your doctors in your treatment.

Welcome,

Houston, TX

[Guest guest]

Hello Judite and welcome to the group,you write English just fine .I hope the

Methotextrate works for you and brings releif it can take up to 6 weeks to

notice any difference.I tolerated the medication just fine,but there are some

that have a hard time usually with the upset stomache.Been off all meds for 3

yrs knock on wood,my names 34 Alberta,Canada hope your doin better soon.

d.Canada Hello

Hello everybody!

I will introduce myself: My name is Judite and I'm 28 years old. I live in

Leiria (Portugal - Europe).

I've to confess that I've serious problems writing correctly in English but

I' ll try..

I decide to write here (Stills Disease Groups) because I've the same problem

that all of you! I found in the page http://www.stillsdisease.org/ some

stories very similarly to mine.

Here, in Portugal, I've not much information about the disease. Sometimes I

feel very lonely because I don't anyone else with Stills. I think that is

very important to meet and talk with someone that understands us.

Well, my Stills were diagnosed last year (17/08/2005). It was terrible

because I was 2 month waiting the diagnosed in two different hospitals

(every day in pain and fever). At first the Doctors thought that I had a

virus or something like that, because the pains and the fever. After many

examinations they told me that I've the Stills. Then I started the treatment

with Prednisolona (30 mg/day). Then I started a dose reduction of the drug.

A 15 days ago, when I was taking only 2,5 mg two times a week (a very low

dosage) the disease appears again (fever and pains). Prednisolona doesn't

result with me. My Rheumatologist tell me that I've to start to take

metotrexato.to control the disease (10 mg/week).

I know that many people are taking metotrexato and I would like to know how

they feel after beginning the treatment, because I'm afraid that the

secondary effects are not " very good " .

Kisses and hugs

Judite

[Guest guest]

Hello Judite

Welcome to the stills family. I think your English is very good. I am

sorry that you feel lonely at the moment, but it is not surprising as stills

is not such a common disease but at least you have found people that

understand and will listen and help if they can.

I live in the U.K. so we come from all parts of the globe.

Take care

Best wishes Joan UK

_____

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Judite Ventura

Sent: 19 July 2006 16:26

To: Stillsdisease

Subject: Hello

Hello everybody!

I will introduce myself: My name is Judite and I'm 28 years old. I live in

Leiria (Portugal - Europe).

I've to confess that I've serious problems writing correctly in English but

I' ll try..

I decide to write here (Stills Disease Groups) because I've the same problem

that all of you! I found in the page http://www.stillsdi

<http://www.stillsdisease.org/> sease.org/ some

stories very similarly to mine.

Here, in Portugal, I've not much information about the disease. Sometimes I

feel very lonely because I don't anyone else with Stills. I think that is

very important to meet and talk with someone that understands us.

Well, my Stills were diagnosed last year (17/08/2005). It was terrible

because I was 2 month waiting the diagnosed in two different hospitals

(every day in pain and fever). At first the Doctors thought that I had a

virus or something like that, because the pains and the fever. After many

examinations they told me that I've the Stills. Then I started the treatment

with Prednisolona (30 mg/day). Then I started a dose reduction of the drug.

A 15 days ago, when I was taking only 2,5 mg two times a week (a very low

dosage) the disease appears again (fever and pains). Prednisolona doesn't

result with me. My Rheumatologist tell me that I've to start to take

metotrexato.to control the disease (10 mg/week).

I know that many people are taking metotrexato and I would like to know how

they feel after beginning the treatment, because I'm afraid that the

secondary effects are not " very good " .

Kisses and hugs

Judite

[Guest guest]

Hi Judite, and welcome. Your English is very, very good. No need to

apologize for any mistakes... I'm sure we'll figure out what you're

saying, and, if not, we can just ask!

I'm taking methotrexate (pill form) and really like how it helps with

joint pain and other symptoms, but I do have trouble with side effects

(like nausea, stomach aches, fatigue, and mouth sores) if I go over 10

mgs., so I'm thinking of switching to injections which are supposed to

have fewer side effects. I hope it works for you. If not, we're

lucky that we now have other options. Many of the folks on this board

take a combination of drugs. Mine is prednisone, methotrexate, and

enbrel, although I'm tapering off of prednisone now. Someone else

posted today that prednisone works really well, and it does seem like

a miracle drug but it's supposed to be a short term solution because

of potential, very serious side effects.

I've had a chance to visit your beautiful country a few times--once in

Lisbon (just briefly) and twice in the Algarve for a month each time

(in and around Sagres). Wonderful people, beautiful countryside, and

the BEST beaches with crystal clear water and wonderful body boarding

waves!

in Maine

>

> I know that many people are taking metotrexato and I would like to

know how

> they feel after beginning the treatment, because I'm afraid that the

> secondary effects are not " very good " .

>

>

[Guest guest]

Dear Judite

warm welcome to the group. i can share your feelings.

I'm PX, 26yr from Singapore. (halfway across the globe from you)

over here, information on Still's is very scarce too...

here is a great place to share support and information.

right now, i'm not on anything except Prednisolone... my rheumy

decide to freeze my pred dose at 35mg for 1 mth after i was taken

off plaquenil due to an allergy reaction... i'm just sitting things

out here too.

she's probably going to put me on metoxtrate after this too...

Feel free to bring anything up for discussion, tats how i learnt

stuff here too. ( ) (^o^ )

stay safe and many pain-free days ahead

cheers

PX

lim_px@...

>

> Hello everybody!

>

>

>

> I will introduce myself: My name is Judite and I'm 28 years old. I

live in

> Leiria (Portugal - Europe).

>

>

>

> I've to confess that I've serious problems writing correctly in

English but

> I' ll try..

>

>

>

> I decide to write here (Stills Disease Groups) because I've the

same problem

> that all of you! I found in the page http://www.stillsdisease.org/

some

> stories very similarly to mine.

>

> Here, in Portugal, I've not much information about the disease.

Sometimes I

> feel very lonely because I don't anyone else with Stills. I think

that is

> very important to meet and talk with someone that understands us.

>

> Well, my Stills were diagnosed last year (17/08/2005). It was

terrible

> because I was 2 month waiting the diagnosed in two different

hospitals

> (every day in pain and fever). At first the Doctors thought that I

had a

> virus or something like that, because the pains and the fever.

After many

> examinations they told me that I've the Stills. Then I started the

treatment

> with Prednisolona (30 mg/day). Then I started a dose reduction of

the drug.

> A 15 days ago, when I was taking only 2,5 mg two times a week (a

very low

> dosage) the disease appears again (fever and pains). Prednisolona

doesn't

> result with me. My Rheumatologist tell me that I've to start to

take

> metotrexato.to control the disease (10 mg/week).

>

>

>

> I know that many people are taking metotrexato and I would like to

know how

> they feel after beginning the treatment, because I'm afraid that

the

> secondary effects are not " very good " .

>

>

>

> Kisses and hugs

>

>

>

> Judite

>

>

>

>

>

>

[Guest guest]

Hi Nadine I have had this disease since 1972. I have had 3 remissions

lasting 9 years each. Every flare was annoying(lasting about 9 months for me

)

but the first one the worst. The fatigue for me dragged on for quite a while .

My best advice is live as healthy a lifestyle as you can. Choose rest periods

if you need them. When the doctor says it is Ok to exercise, walk, swimm, or

whatever you can. So when a flare is over you can recover faster, hopefully.

Choose less stressful situations if you can. My grandparents left England in

1903, I grew up in NYC. I live in Nj now outside of Philly. I became a nurse

and I have 2 kids one adopted. Hoping this passes quickly for you. Liz NJ

[Guest guest]

Hello Nadine,

Sorry to hear that you are suffering with Still's but

glad to hear that you were diagnosed & treated so

quickly - with some of us it took years. There are a

few of us in the UK - I live in Surbiton in Greater

London.

Yes, I do find the heat makes joint pain worse . . .

and the cold . . . and the damp!

I hope your flare doesn't last too long - some of us

have extended periods of remission when we cope quite

well, so it's not all bad news.

I have found this site a great help - I am sure you

will also.

Best wishes

Carole (UK)

--- Nadine wrote:

> Hi Everyone

>

> Im new to the list. I live in London, England and Im

> 28. My birthday is 9th December.

> About a month ago I came down with spiking fevers

> with a rash all over my legs and arms. Im a

> paramedic so took myself to my local A+E as i know

> the nurses there. First of all the doctors thought I

> had meningitis but then told me I had a urine

> infection and sent me home. The fevers continued and

> got worse as did the rash. I started getting riggors

> and after a week I had difficulty moving because of

> joint pains until I had a fever. I stayed in bed all

> day and ate nothing. My friend took me back to

> hospital where I was admitted with off the scale

> infection blood results. Because of my job they

> thought I could have any infection and tested me for

> everything. The joint pain got worse. After a week I

> saw a rheumatologist who had 5 cases of Stills in

> the past. He diagnosed me with Stills. I was placed

> on 20mg Prednisolone and 10mg Omeprazole a day. I

> havent had a spiking fever or rash since the first

> morning of taking those meds, but for a week after I

> had really bad joint pain. When I woke up at home in

> the morning I would get knee and elbow pain for

> around 5 hours. We were in the middle of a heatwave

> and some people say the heat makes your pain worse,

> is this true?

> Its been a week now since I have had any joint pain

> or any symptoms what so ever. At first I was very

> depressed about getting this disease but now I can

> easily forget. I know the meds probably have

> something to do with me feeling better. Its hard

> coming to terms with maybe having to leave my job

> and wondering how bad I may get and what career I

> can have in the future. I love photography and would

> one day want to change career to that. I havent been

> back to hospital yet and have an appointment with my

> rheumatolgist next week.

> Well thats me, The Uk doesnt have alot of infomation

> on Stills on the net so this message board has been

> a great help.

> Most people on here seem so much worse off than me

> and Im wondering if I will get better or worse, if

> the disase will come back and stay with me forever

> and what other diseases I will get because of it. I

> guess its the unknown that has depressed me

> recently.

>

> Nadine

>

> [Non-text portions of this message have been

> removed]

>

>

[Guest guest]

Welcome to the group, Nadine. So glad you found us. As I'm sure you've

discovered, having support from others who deal with Still's is so important.

20 years ago, when I first has symptoms in college, they didn't know what they

were dealing with. Consequently, it took 8 years of numerous doctors and

hospitalizations before my diagnosis. Thanks goodness nowadays they are finding

it sooner. I suffered so much that I began to make plans for my children in

case something happened to me. Then, after my diagnosis, I got better with

treatment. Currently, I take Prednisone and Methotrexate along with Remicade

treatments. I have had remissions before, but the flare I am experiencing

presently has lasted over 2 years. It's not the same for everyone.

Don't feel guilty about not being as " sick " as others here. We don't see

things that way. If you are having a bad day that's all that matters. Hang in

there and ask anything you want of us. Get educated and work with your doctor.

Don't be afraid to speak up to him/her about your concerns.

Hope your days are brighter & pain free soon..

Gail

Nadine wrote:

Hi Everyone

Im new to the list. I live in London, England and Im 28. My birthday is 9th

December.

About a month ago I came down with spiking fevers with a rash all over my legs

and arms. Im a paramedic so took myself to my local A+E as i know the nurses

there. First of all the doctors thought I had meningitis but then told me I had

a urine infection and sent me home. The fevers continued and got worse as did

the rash. I started getting riggors and after a week I had difficulty moving

because of joint pains until I had a fever. I stayed in bed all day and ate

nothing. My friend took me back to hospital where I was admitted with off the

scale infection blood results. Because of my job they thought I could have any

infection and tested me for everything. The joint pain got worse. After a week I

saw a rheumatologist who had 5 cases of Stills in the past. He diagnosed me with

Stills. I was placed on 20mg Prednisolone and 10mg Omeprazole a day. I havent

had a spiking fever or rash since the first morning of taking those meds, but

for a week after I had really bad joint pain.

When I woke up at home in the morning I would get knee and elbow pain for

around 5 hours. We were in the middle of a heatwave and some people say the heat

makes your pain worse, is this true?

Its been a week now since I have had any joint pain or any symptoms what so

ever. At first I was very depressed about getting this disease but now I can

easily forget. I know the meds probably have something to do with me feeling

better. Its hard coming to terms with maybe having to leave my job and wondering

how bad I may get and what career I can have in the future. I love photography

and would one day want to change career to that. I havent been back to hospital

yet and have an appointment with my rheumatolgist next week.

Well thats me, The Uk doesnt have alot of infomation on Stills on the net so

this message board has been a great help.

Most people on here seem so much worse off than me and Im wondering if I will

get better or worse, if the disase will come back and stay with me forever and

what other diseases I will get because of it. I guess its the unknown that has

depressed me recently.

Nadine

[Guest guest]

Nadine,

The unknown is very depressing but over time you sort of get used to

it and can put it to the back of your mind for the most part.

The reason why everyone on this board seems so much worse is off is

because we are typically the chronic cases of Stills and so we seek

out the support, comfort, and knowledge of others in a similar

situation to us. There are plenty of others who have been on the

board who are now in remission and out enjoying their lives, not

spending as much time in front of the computer as the rest of us.

There are also people who have one quick flare up of Stills and jsut

as quickly it's gone, never to be seen again.

So there is much hope that you are one of the lucky ones who had

sudden onset, quick diagnosis, and quick treatment.

We all know how scary it is to be diagnosed with this and welcome

you to the board. Hate that you have to be here, but so glad that

you found us. YOu can search the message archives if there is a

particular issue you want information on - as well as just asking

questions!

Houston

[Guest guest]

Hello Nadine;

welcome to the group my name is Rojas, I live in Ft Worth Texas. Its

very hot here, its been in the triple digits here. I say heat does effect

stills. I am sorry that you have stills but this is a great group. they give

you information and alot of support, because they know what you are going

through. People ask how you are doing and want to know what stills is and just

look at you and say you dont look sick.

I am in a semi remission as long as I take my Kineret Shots, this is the only

medicine I take for the stills now. Now my fibromayglia is more prominent, and

my left hand is numb. I usually dont post, I just usually read them, they give

me comfort.

Have a Pain free day,

Rojas

---------------------------------

Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

[Guest guest]

Hi Nadine,

I'm glad you found us, but sorry that you've had to! Your introduction to

stills sounds like a very familiar story and is the way mine tends to show

itself - with extremely high spiking fevers and a rash, and oh those

riggors! My fevers tend to take a little more taming but once under

control I tend to be left with fairly classic RA symptoms.

My last major flair (after a 15 year remission) was about 7 years ago and

I'm fairly symptom free most of the time save for a few aches and pains and

less than ideal levels of energy!

Personally, I've not noticed the weather making too much difference to me

except for this recent heat wave which has just been going on too long and

caused me a lot of joint pain all over, although I think I may have had a

virus which probably hasn't helped. I find the steroids tend to mask the

symptoms of many viruses so I usually have a look around to see what

illnesses " normal " people are suffering from to see if I can pin " feeling

crap " on something other than the stills!

Stills is a wholly individual disease and I try not to waste too much time

worrying what it's gonna do next (I did say " try " ) as it will make its

intentions known soon enough :-) One thing I have learned to do is to pace

myself and build rest periods in to my routine - not always easy,

especially for a nurse I suspect!

I work in IT and am very fortunate in that before I flared I managed to get

myself in to the position of being able to work from home a lot and pretty

much write my own schedule so I can keep those all important " easy " days in

my routine. It is still a very stressful line of work though and I'd dearly

love to do something else, if only I could find something that would pay

the bills!

My partner has discovered a love of photography and is trying to kick start

her business and I'm sure she'd be happy to chat if you'd like to. Have a

look at her site and see what you think:

http://www.switch-photography.moonfruit.com

The keen eyed of you may actually spot me on there!

There are a few of us " Brits " on here and we try to get together once in a

while and you are of course more than welcome to join us - we're a

surprisingly normal bunch :-)

I sincerely hope your stills stays in check Nadine, but whatever path it

takes there's a great bunch of people here to listen and help and you can

pretty much guarantee that no matter what your stills does, at least one

other person will have had the same experience.

Keep yer chin up!

Graham (38)

West Sussex, UK

At 23:53 02/08/2006, you wrote:

>Hi Everyone

>

>Im new to the list. I live in London, England and Im 28. My birthday is

>9th December.

>About a month ago I came down with spiking fevers with a rash all over my

>legs and arms. Im a paramedic so took myself to my local A+E as i know the

>nurses there. First of all the doctors thought I had meningitis but then

>told me I had a urine infection and sent me home. The fevers continued and

>got worse as did the rash. I started getting riggors and after a week I

>had difficulty moving because of joint pains until I had a fever. I stayed

>in bed all day and ate nothing. My friend took me back to hospital where I

>was admitted with off the scale infection blood results. Because of my job

>they thought I could have any infection and tested me for everything. The

>joint pain got worse. After a week I saw a rheumatologist who had 5 cases

>of Stills in the past. He diagnosed me with Stills. I was placed on 20mg

>Prednisolone and 10mg Omeprazole a day. I havent had a spiking fever or

>rash since the first morning of taking those meds, but for a week after I

>had really bad joint pain. When I woke up at home in the morning I would

>get knee and elbow pain for around 5 hours. We were in the middle of a

>heatwave and some people say the heat makes your pain worse, is this true?

>Its been a week now since I have had any joint pain or any symptoms what

>so ever. At first I was very depressed about getting this disease but now

>I can easily forget. I know the meds probably have something to do with me

>feeling better. Its hard coming to terms with maybe having to leave my job

>and wondering how bad I may get and what career I can have in the future.

>I love photography and would one day want to change career to that. I

>havent been back to hospital yet and have an appointment with my

>rheumatolgist next week.

>Well thats me, The Uk doesnt have alot of infomation on Stills on the net

>so this message board has been a great help.

>Most people on here seem so much worse off than me and Im wondering if I

>will get better or worse, if the disase will come back and stay with me

>forever and what other diseases I will get because of it. I guess its the

>unknown that has depressed me recently.

>

>Nadine

[Guest guest]

Hello and welcome to the group Nadine.I'm I was diagnosed at 30 yrs old

in 2002.There have been a few members that have went into very early remissions

and that would truly be the best outcome.I hope you continue improving.Your

diagnosis was a very quick one indeed Nadine ,myself I was misdiagnosed 3 times

:)yet mine was quick DX as well..I am currently one of the lucky ones,no med

remission,take care. d.Canada

hello

Hi Everyone

Im new to the list. I live in London, England and Im 28. My birthday is 9th

December.

About a month ago I came down with spiking fevers with a rash all over my legs

and arms. Im a paramedic so took myself to my local A+E as i know the nurses

there. First of all the doctors thought I had meningitis but then told me I had

a urine infection and sent me home. The fevers continued and got worse as did

the rash. I started getting riggors and after a week I had difficulty moving

because of joint pains until I had a fever. I stayed in bed all day and ate

nothing. My friend took me back to hospital where I was admitted with off the

scale infection blood results. Because of my job they thought I could have any

infection and tested me for everything. The joint pain got worse. After a week I

saw a rheumatologist who had 5 cases of Stills in the past. He diagnosed me with

Stills. I was placed on 20mg Prednisolone and 10mg Omeprazole a day. I havent

had a spiking fever or rash since the first morning of taking those meds, but

for a week after I had really bad joint pain. When I woke up at home in the

morning I would get knee and elbow pain for around 5 hours. We were in the

middle of a heatwave and some people say the heat makes your pain worse, is this

true?

Its been a week now since I have had any joint pain or any symptoms what so

ever. At first I was very depressed about getting this disease but now I can

easily forget. I know the meds probably have something to do with me feeling

better. Its hard coming to terms with maybe having to leave my job and wondering

how bad I may get and what career I can have in the future. I love photography

and would one day want to change career to that. I havent been back to hospital

yet and have an appointment with my rheumatolgist next week.

Well thats me, The Uk doesnt have alot of infomation on Stills on the net so

this message board has been a great help.

Most people on here seem so much worse off than me and Im wondering if I will

get better or worse, if the disase will come back and stay with me forever and

what other diseases I will get because of it. I guess its the unknown that has

depressed me recently.

Nadine

[Guest guest]

In a message dated 8/3/2006 6:18:52 AM Eastern Daylight Time,

fishycake@... writes:

Most people on here seem so much worse off than me and Im wondering if I

will get better or worse, if the disase will come back and stay with me forever

and what other diseases I will get because of it. I guess its the unknown

that has depressed me recently.

Dear Nadine,

You have asked the million dollar question! Not only can we not compare how

stills treats each one of us from each other, but how it treats each of us

differently over time. There are times I forget I have stills, but not too

often for me. However, I have been able to work for the most part since getting

stills - albiet not the same kinds of work as pre-stills. The meds don't let

me concentrate as much as I need to to stay in my old jobs.

On good days I think that Stills is just an adventure - you just never know

what it'll do! A much more positive way of looking at the unknown!

Good luck.

Carole from Hollywood FL

[Guest guest]

, welcome. I'm Debi, mom to 10, 7, and 4 yr olds, my middle

has ASD.

Debi