Re: Thought I would update everyone

[Guest guest]

Lauri,

Hi I am Lorie In Seattle, I too have the night sweats but not as severe when

i had the onset of this disease. I also used to sweat durning the day, right

after each fever spike I would sweat, right after a shower I would sweat.

Sweat Sweat sweat... I think that this is pretty common in the beginning.

As far your doc, take his advice and go find someone who will listen and be

willing to learn about this disease. I went thru 2 docs before this one I

have now, and i am still evaluating her as she is me...Hang in there,

frustration with this disease is one of its main components and so we all

must learn and teach ourselves that we will run into road blocks along the

way but we can Conquer them. Listen to your body carefully and take care of

yourself. Be a kinder and gentler person to yourself . You deserve the best

right now. We will always be here for you, feel free to e-mail me personally.

I will be here

Sincerely Your New Stills Friend,

Lorie in Seattle

[Guest guest]

Melt and Lauri

Amen to flannel sheets....they are the pampers of the sheet family ( trying

to be funny today) Here's to another great day for all of us...

Lorie in Seattle

[Guest guest]

Hi Lauri,

Yup !!!! The night sweats are the pitts. They are part of Stills. I never

had the day time sweats but at night they were terrible. I actually hated to

go to bed because I knew they would wake me up all night long. I would go

through three or four nighties a night. What helped me a lot was to get a

bunch of towels. One large one under my body, one normal one between my

knees (I am a side sleeper) one hand towel around my neck and one hand towel

on my pillow. I would change those all through the night but it was easier

to throw those in the washing machine in the morning than to strip the bed

each morning. One good thing for me was that as I got better from my flare,

the night sweats would leave or it might be the other way around. The night

sweats would leave and then I'd get better............ ) Anyway, I

don't believe there is a cure for them.... (

I surely would dump that doctor of yours. Do you have any of the Stills

brochures that Bob made up about a year or so ago? They are wonderful for

information for people that do not understand Stills or have never heard of

it and that includes doctors. Evidently, he/she does not have any Stills

patients. I think I was the first for my Rheumatologists and we learned

together. I was lucky that neither of them thought I was faking or was

crazy.

Find yourself a new doctor right away. Punch this one in the nose first

!!!!!

xxoo

Ca. Carmen

[Guest guest]

OMG! I guess I'm lucky! I haven't gone as far as drenching any sheets

yet..LOL!!!

[Guest guest]

Hi, Lauri. To be blunt -- your doctor is an idiot - - you are a sweet good

person in pain who needs medical attention! it sounds like Bob is trying to

find you someone. I am also talking to a specialist this week and will ask

him if he may know anyone out by you. Could you please give me more info. on

where you are? You are welcome to email me privately. If you just want to

be left alone, I understand that too.

hang in there!

[Guest guest]

I'm in Richmond, VA. This is the third doctor that I have been to. I

started out with a doctor at Health South. I saw this man for about 20

months. He was sure of the Stills diagnosis. I left him because after 20

months I was making no progress and was getting very little out of him when I

tried to talk to him. I felt at that time I needed to go for a second

opinion. I had been on MTX for 18 of the 20 months and it was wrecking havoc

with me. I went for a second opinion to a doctor at the Medical College of

Viriginia. He seconded the AOSD diagnosis. I don't know if you remember my

fiasco there but on the second visit I was treated so rudely by him and his

nurse practitioner that I left in tears.

This last guy is in ston Willis Hospital. He was referred to me by one

of the doctors in my primary care drs. office. I usually see one doctor but

had to go in one time when he was on vacation so I saw this other guy. He

treated me back in 94 when I had my first encounter with the " mystery

illness " (funny note.. I met this dr because my doctor of 15 yrs told me

that this episode, the beginning of my AOSD, was all in my head and to check

myself into a mental hospital) He told me that this doctor went to school

with my primary. I thought, hey.. this sounds good. I set up the

appointment and the rest is history. When I told my primary that I was going

to see him he seemed somewhat hesitant. He did mention that he wished I had

stayed with my first doctor.

This last guy bragged about how he could think of 4 AOSD patients off the top

of his head and that I was nothing like them. It just seems to me that he

took real issue to the fact that my primary had me stop taking Ambien (the

only med the rhuem. had me on) so that I could take a mixture of meds called

a " california boost " which in turn took care of all of my fibromyalgia

symptoms in a matter of weeks.

Bob and Carole, - if you could find me someone that will believe that

I am in horrible pain, that I feel like I'm going to be dead in the next few

years and that I am really sick... I would be forever in your debt.

Love

Lauri

[Guest guest]

I'm in Richmond, VA. This is the third doctor that I have been to. I

started out with a doctor at Health South. I saw this man for about 20

months. He was sure of the Stills diagnosis. I left him because after 20

months I was making no progress and was getting very little out of him when I

tried to talk to him. I felt at that time I needed to go for a second

opinion. I had been on MTX for 18 of the 20 months and it was wrecking havoc

with me. I went for a second opinion to a doctor at the Medical College of

Viriginia. He seconded the AOSD diagnosis. I don't know if you remember my

fiasco there but on the second visit I was treated so rudely by him and his

nurse practitioner that I left in tears.

This last guy is in ston Willis Hospital. He was referred to me by one

of the doctors in my primary care drs. office. I usually see one doctor but

had to go in one time when he was on vacation so I saw this other guy. He

treated me back in 94 when I had my first encounter with the " mystery

illness " (funny note.. I met this dr because my doctor of 15 yrs told me

that this episode, the beginning of my AOSD, was all in my head and to check

myself into a mental hospital) He told me that this doctor went to school

with my primary. I thought, hey.. this sounds good. I set up the

appointment and the rest is history. When I told my primary that I was going

to see him he seemed somewhat hesitant. He did mention that he wished I had

stayed with my first doctor.

This last guy bragged about how he could think of 4 AOSD patients off the top

of his head and that I was nothing like them. It just seems to me that he

took real issue to the fact that my primary had me stop taking Ambien (the

only med the rhuem. had me on) so that I could take a mixture of meds called

a " california boost " which in turn took care of all of my fibromyalgia

symptoms in a matter of weeks.

Bob and Carole, - if you could find me someone that will believe that

I am in horrible pain, that I feel like I'm going to be dead in the next few

years and that I am really sick... I would be forever in your debt.

Love

Lauri

[Guest guest]

Let me say I am so proud of the courage you took to call that ..... back. I

know it wasn't easy but now you know for sure that you are not being

emotional and he is the jerk you thought him to be.

Lauri often times the night sweats are caused from breaking a fever at night

that you may not even know you have because you're sleeping. I often use

flannel sheet blankets like those in the hospital to absorb some of the

moisture. You still wake up wet but not as clammy as with a cotton sheet.

Here's to a better week dear friend, Melt

----- Original Message -----

> I called my dr back on Tuesday like he instructed me. The nurse said he

was

> with a patient but would call me back. Of course, I hear nothing. I call

> back weds and was snapped at by the receptionist saying that the dr

doesn't

> make the calls, the nurse does. I told her that he said to ask to speak

to

> him. Anyhow.. no call on weds.

>

> Late Thursday he finally calls me. > I do have one question for all of

you guys though. Lately I have been waking

> up with horrible night sweats.

[Guest guest]

Lauri, Im so sorry to read what all is going on with your doc, I know you

had some problems with other docs before, is this the 1st doc that you went

to or one of the other ones? I need to find your original letter, anyway

again Im sorry, why doesnt he understand that the fevers are not in your

head. And about the night sweats that is definitly a symptom of stills.

Let me find your old letter and I can tell you more

GO DAWGS !!!!!

[Guest guest]

Me too, had those darn sweats. Can remember soaking the sheets so

bad that needed changing sometimes twice a night. Set a little fan

on my desk at the office, even in the winter. Sweats not as bad

anymore, but still get some kind of deamon that likes to kick off

the covers on the bed at around 2am. Pretty much like clock work.

Then have to gather them up to try and not freeze to death. Fun Fun

Fun. Hang in there is all I can say.

Dan

> I do have one question for all of you guys though. Lately I have

been waking

> up with horrible night sweats. Now, I am known for the fact that

I am always

> cold and that I never sweat. Before getting sick I was working on

my black

> belt in kickboxing and my partners would marvel at the fact that I

barely

> ever break a sweat. When I fall asleep I'm normally cold and

bundled under

> the covers.. hours later I'm waking up sweating like crazy yet I

am cool to

> the touch. Anyone ever had this problem?

>

> Hope all is well with everyone

>

> Lauri

>

>

>

[Guest guest]

Hi Lauri:

Where are you located at? Let me see if I can find you a

decent Doctor and one who knows what the hell he is talking about. It sounds

like that clown you had just doesn't know which way to turn and doesn't want

to admit it, like a lot of them who have egos bigger than their houses or

their bank accounts. Please let me know! Take care now and be PAIN FREE!

Love Ya!

We Will Win

Love Y'all

Mom & Dad

Bob & Carole

Panama City, Florida

Please Visit the International Stills Disease Foundation Web Site at:

www.stillsdisease.org

[Guest guest]

Caroline

The California Boost is a combo of Effexor and Remeron. I take 150 mgs of

Effexor in the AM and 30mg of Remeron (the kind that dissolves on your

tongue..ick) when I go to bed. Remeron is tricky. 30 mg makes me very

tired. Taking it up to 60 mg keeps me wide awake..lol. Anyway, after 3

weeks on this mixture all of my fibro symptoms went away!

This is the first antidepressant treatment that has made a noticeable

difference with me!

Lauri