New here (this is long!!!)

[Guest guest]

Hi everyone!

I am not only new to this Group, but I have never been a member of a

Group or Forum before. I hope I post and answer the way I'm supposed

to (LOL). If it is okay I'm going to give a little history and ask a

couple of questions.

When I was 1 year old and again at 18 mos I was very ill and it was

determined that I had JRA. I was the youngest in Missouri history to

be diagnosed with it. Looking back at the symptoms it is obvious

that it was Stills. After going to Children's Mercy in KC they got

the treatment under control and it eventually went away.

I am now 33 and about six months ago I started having symptoms and am

currently in the process of being diagnosed. My initial symptoms

were joint pain (wrists, knees, fingers, spine, ankles), severe

fatigue, and fever. In September 2007 I had a bout of Pleurisy which

they treated with Motrin. It went away and then came back worse in

October 2007 (this time treated with naproxin sodium which my stomach

couldn't tolerate). The short of the rest of it: I was having fever

spikes every night and would wake up with soaked sheets; with the

fever my face, chest, and neck would splotch up (I'm not sure if it

is the Stills rash or not) and didn't necessarily hurt but is very

hot; chest pain (associated with the pleurisy); a small pleural

effusion; and headaches. The following blood work has been high:

WBC, platelets, liver enzymes, sed rate, AST, ALT, RDW, neutrophils,

monophils, and alpha 1 antitripsyn. The following blood work has

been low: albumin and methylmalonic acid, serum. My rheumatologist

doesn't believe that Stills is a possiblity since he has not seen the

rash nor has my temperature been elevated any time I've seen him or

my PCP. He was able to reproduce the chest pain (when I had

pleurisy) and considered this " point tenderness " related to fibro. I

have been on SSRI's for years to treat depression. His belief is

that the SSRI's, Motrin, Vicodin, and Lyrica will take care of my

illness. He says that if I had Stills I would be " really " sick.

Whether it is Stills or Fibro is not what I have an issue with. I

just want my rheumatologist to consider every possible treatment and

not rule them out because he attributes it to depression or lack of

symptoms. I have had one week of the Lyrica and noticed a change in

my fatigue but not the fever or joint pain. I haven't had the Lyrica

anymore because it has to be preauthorized by my insurance and it has

been 3 weeks with no answer.

I see my doctor this week and have made a list of all symptoms, time

of onset, duration, what has haelped them, what has made them worse,

and how they currently are affecting me. My questions: Should I

push my belief that it is more than fibro and depression or should I

try the Lyrica (once it comes in) and see what that does? Doesn't

the blood work (and other symptoms) coincide with abnormalities

noticed with Stills? Is it unusual for the fatigue to be so severe

that I sleep 12+ hours a day and become exhausted simply running

everyday errands? That's all I can think of right now.

Thank you for listening and I apologize for the length of this post!

~peace

Kaia Dawn

[Guest guest]

Welcome Kaia,

What a beautiful unusual name. I'm sorry your ill and can't get a diagnoses

for help yet.

I only know that when I was first ill I had the chest pain as well about 6

months before my bad onset that was diagnosed as pneumonia although they

couldn't find evidence on x-rays and then bursitis in one of my toes from an old

childhood injury.

Then the following year the glands, flu symptoms, muscles to where I couldn't

lift my head from a pillow and swelling in my knees so severe they were the size

of a softball on the back and the fevers started twice a day. A general

practice doctor put me off as flu virus for another couple of months until I was

sent to an internist and with enlarged spleen and hospitalized the same day.

Finally diagnosed after all ruling out everything else with extensive testing

and a fine rheumatologist (same man 30 yrs now) diagnosed Stills a month later

was brought in. My rash did not present until the following year or months

later I believe? I cannot recall properly. It may have in the beginning and

the original doctor did not know what it was but did not again until I had been

seeing my rheumy for a while because he then showed it to many of his young

collegues so they would know what it looked like because it was rare.

This was in the seventies and I don't think Fibro was a factor at that time and

I was told that Still's would and did in fact attack the muscles and connective

tissues and well and lining of organs so I would possibly get a second opinion

if you have the money or the insurance that is available for that option. These

are just my experiences and I hope it helps. OH and Yes, yes, exhaustion can be

one of the biggest side affects of Stills because our bodies are fighting itself

as if it is constantly fighting an infection and rest was always very important

my doctors felt, especially in the worst times for me, so much so that I would

be hospitalized just for that very reason on several occasions.

Welcome again, nickname)

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

From: folkgirl1974

I am not only new to this Group, but I have never been a member of a

Group or Forum before. My questions: Should I

push my belief that it is more than fibro and depression or should I

try the Lyrica (once it comes in) and see what that does? Doesn't

the blood work (and other symptoms) coincide with abnormalities

noticed with Stills? Is it unusual for the fatigue to be so severe

that I sleep 12+ hours a day and become exhausted simply running

everyday errands?

~peace

Kaia Dawn

[Guest guest]

Kaia:

welcome and feel at home here.

I to have wondered about having stills from the time as a little boy. at 4 I

was very very ill and all the complaints were stills like from then off all my

life I was sick on and off. I also have had a few doc that would say it is not

stills and this was even after i was DX at Stanford medical center university

Stanford Calif. . some say fibo only other flat out say they do not know what

stills is or if there is any such thing, never give up and learn as much as you

can as I believe you are doing.

I have been treated for every thing from depression to fibo and heart problems

even after my dx in fact my rummatologist at the time would not agree with the

dx even thou it was from a very well known teaching rummatologist at a well

known school for medicine. So for me I would push like even to changing docs (

some thing i have done many times of late) never give up as remember it is all

about what it is not more then what it is . some day may be there will be a test

for stills we can hope . I also did not get the fevers that bad and My rash was

so light it was hard to see. stills it different with each person but together

we have all suffered almost every thing LOL

hugs all

the redneck

Marty

Calling an illegal alien an " undocumented immigrant " is like calling a drug

dealer an " unlicensed pharmacist. "

" Those who hammer their guns into plows will plow for those who do not. "

~ Jefferson

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

To donate http://www.stillsdisease.org/donations

________________________________________________________________________________\

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[Guest guest]

Sorry you had to become ill to find us, but you came to a great support

group. I've had Stills since (at least) 1/04. My name is Kirk & I'm from NE

Pennsylvania. I'm married with 2 sons, (9) & on (6).

I wish you well, and if you have anything to ask,please do. By the way,

there is no such thing as a post that is too long. Welcome aboard!

Kirk

>

> Hi everyone!

>

> I am not only new to this Group, but I have never been a member of a

> Group or Forum before. I hope I post and answer the way I'm supposed

> to (LOL). If it is okay I'm going to give a little history and ask a

> couple of questions.

>

> When I was 1 year old and again at 18 mos I was very ill and it was

> determined that I had JRA. I was the youngest in Missouri history to

> be diagnosed with it. Looking back at the symptoms it is obvious

> that it was Stills. After going to Children's Mercy in KC they got

> the treatment under control and it eventually went away.

>

> I am now 33 and about six months ago I started having symptoms and am

> currently in the process of being diagnosed. My initial symptoms

> were joint pain (wrists, knees, fingers, spine, ankles), severe

> fatigue, and fever. In September 2007 I had a bout of Pleurisy which

> they treated with Motrin. It went away and then came back worse in

> October 2007 (this time treated with naproxin sodium which my stomach

> couldn't tolerate). The short of the rest of it: I was having fever

> spikes every night and would wake up with soaked sheets; with the

> fever my face, chest, and neck would splotch up (I'm not sure if it

> is the Stills rash or not) and didn't necessarily hurt but is very

> hot; chest pain (associated with the pleurisy); a small pleural

> effusion; and headaches. The following blood work has been high:

> WBC, platelets, liver enzymes, sed rate, AST, ALT, RDW, neutrophils,

> monophils, and alpha 1 antitripsyn. The following blood work has

> been low: albumin and methylmalonic acid, serum. My rheumatologist

> doesn't believe that Stills is a possiblity since he has not seen the

> rash nor has my temperature been elevated any time I've seen him or

> my PCP. He was able to reproduce the chest pain (when I had

> pleurisy) and considered this " point tenderness " related to fibro. I

> have been on SSRI's for years to treat depression. His belief is

> that the SSRI's, Motrin, Vicodin, and Lyrica will take care of my

> illness. He says that if I had Stills I would be " really " sick.

> Whether it is Stills or Fibro is not what I have an issue with. I

> just want my rheumatologist to consider every possible treatment and

> not rule them out because he attributes it to depression or lack of

> symptoms. I have had one week of the Lyrica and noticed a change in

> my fatigue but not the fever or joint pain. I haven't had the Lyrica

> anymore because it has to be preauthorized by my insurance and it has

> been 3 weeks with no answer.

>

> I see my doctor this week and have made a list of all symptoms, time

> of onset, duration, what has haelped them, what has made them worse,

> and how they currently are affecting me. My questions: Should I

> push my belief that it is more than fibro and depression or should I

> try the Lyrica (once it comes in) and see what that does? Doesn't

> the blood work (and other symptoms) coincide with abnormalities

> noticed with Stills? Is it unusual for the fatigue to be so severe

> that I sleep 12+ hours a day and become exhausted simply running

> everyday errands? That's all I can think of right now.

>

> Thank you for listening and I apologize for the length of this post!

>

> ~peace

> Kaia Dawn

>

>

>

--

Everything in life sucks except things that should!