Re: Still's or not Still's?

[Guest guest]

I had some rashes, but they were faint and rare. One thing I can say from

experience is if 4/5 say you have still, you probably do. This is a

relatively new endeaver for most dr'd, and opinions vary wildy. The way I

remember it is if you had " x " number of the symptoms, it is considered

Stills.

Jope this is readable (I'm totally out of it) and that it elps.

Do tons of research, you'll find an answer & Dr. that you're comfortable

with. Every good dr I ever had alwasy was trying to find out what I have,

and I've been tested countless times. Stills is " best fit " to date, so I

feel it's better than not having something to " chase after "

Relax, learn what you can & most importantly, let your Dr'd investigate

any & all possibilities. Who knows, you may find yuou have something les

severe & more easily treated.

Krik.

>

> I have to admit I am really confused about my illness.

>

> I have had four rheumatologist tell me I had stills but the most recent

> one

> sort of changed her mind after seeing me the last time and said she

> thought

> I probably didn't have Still's. But if not Still's then what?

>

> I do not, nor have ever had the following:

>

> Rash

> Swollen Joints

>

> Any severe pain above my waist

>

> What I have had:

>

> Fevers of up to 103F mostly occurring in the evenings that come and go.

>

> Pain in my legs from my ankles to my lower back. The worst being my

> muscles but there is also joint pain.

>

> High WBC and ESR. The sed rate has at times been approaching 200.

>

> Is there anyone else on the list that has Still's and does not have a rash

> or swollen joint?

>

> Thanks

>

> Darv

>

>

[Guest guest]

Kirk - hang in there man -- stick with the ice packs...

I hope you can get some good meds soon to get you through this

-- Re: Still's or not Still's?

I had some rashes, but they were faint and rare. One thing I can say from

experience is if 4/5 say you have still, you probably do. This is a

relatively new endeaver for most dr'd, and opinions vary wildy. The way I

remember it is if you had " x " number of the symptoms, it is considered

Stills.

Jope this is readable (I'm totally out of it) and that it elps.

Do tons of research, you'll find an answer & Dr. that you're comfortable

with. Every good dr I ever had alwasy was trying to find out what I have,

and I've been tested countless times. Stills is " best fit " to date, so I

feel it's better than not having something to " chase after "

Relax, learn what you can & most importantly, let your Dr'd investigate

any & all possibilities. Who knows, you may find yuou have something les

severe & more easily treated.

Krik.

>

> I have to admit I am really confused about my illness.

>

> I have had four rheumatologist tell me I had stills but the most recent

> one

> sort of changed her mind after seeing me the last time and said she

> thought

> I probably didn't have Still's. But if not Still's then what?

>

> I do not, nor have ever had the following:

>

> Rash

> Swollen Joints

>

> Any severe pain above my waist

>

> What I have had:

>

> Fevers of up to 103F mostly occurring in the evenings that come and go.

>

> Pain in my legs from my ankles to my lower back. The worst being my

> muscles but there is also joint pain.

>

> High WBC and ESR. The sed rate has at times been approaching 200.

>

> Is there anyone else on the list that has Still's and does not have a rash

> or swollen joint?

>

> Thanks

>

> Darv

>

>

[Guest guest]

Docs like to change their minds... I'm not an expert, but your symptoms sure

are similar to mine.

I have had the rashes thought. But they come and go. Just hang in there.

Not all doctors know stills - it's rare - that makes it so much harder to dx

Sounds like you may also have secondary Fibromyalgia (I have that too). It

s somewhat common.

I take it one day at a time.

I can tell you that when it comes to autoimmune diseases, they tend to treat

most of them with the same meds,

so - just try to follow the docs advice and see what works best for you.

-- Still's or not Still's?

I have to admit I am really confused about my illness.

I have had four rheumatologist tell me I had stills but the most recent one

sort of changed her mind after seeing me the last time and said she thought

I probably didn't have Still's. But if not Still's then what?

I do not, nor have ever had the following:

Rash

Swollen Joints

Any severe pain above my waist

What I have had:

Fevers of up to 103F mostly occurring in the evenings that come and go.

Pain in my legs from my ankles to my lower back. The worst being my

muscles but there is also joint pain.

High WBC and ESR. The sed rate has at times been approaching 200.

Is there anyone else on the list that has Still's and does not have a rash

or swollen joint?

Thanks

Darv

[Guest guest]

Any Suggestions??? I'm On Oxy 40 (X2 when severe) , Roxicodone 15 for

breakthrough and Fentanyl Patches 75 mg (Just put one on to pray it helps. I

also had my steroids jacked back up to 20,15,10,9,8,7,6,5 until I'm back to

4. I feel a bit beter at this moment, but my headache hasn't been phased!!!

>

> Kirk - hang in there man -- stick with the ice packs...

> I hope you can get some good meds soon to get you through this

>

>

> -- Re: Still's or not Still's?

>

> I had some rashes, but they were faint and rare. One thing I can say from

> experience is if 4/5 say you have still, you probably do. This is a

> relatively new endeaver for most dr'd, and opinions vary wildy. The way I

> remember it is if you had " x " number of the symptoms, it is considered

> Stills.

> Jope this is readable (I'm totally out of it) and that it elps.

> Do tons of research, you'll find an answer & Dr. that you're comfortable

> with. Every good dr I ever had alwasy was trying to find out what I have,

> and I've been tested countless times. Stills is " best fit " to date, so I

> feel it's better than not having something to " chase after "

> Relax, learn what you can & most importantly, let your Dr'd investigate

> any & all possibilities. Who knows, you may find yuou have something les

> severe & more easily treated.

> Krik.

>

> On 02/01/2008, Darv <darvin@... <darvin%40comcast.net>> wrote:

> >

> > I have to admit I am really confused about my illness.

> >

> > I have had four rheumatologist tell me I had stills but the most recent

> > one

> > sort of changed her mind after seeing me the last time and said she

> > thought

> > I probably didn't have Still's. But if not Still's then what?

> >

> > I do not, nor have ever had the following:

> >

> > Rash

> > Swollen Joints

> >

> > Any severe pain above my waist

> >

> > What I have had:

> >

> > Fevers of up to 103F mostly occurring in the evenings that come and go.

> >

> > Pain in my legs from my ankles to my lower back. The worst being my

> > muscles but there is also joint pain.

> >

> > High WBC and ESR. The sed rate has at times been approaching 200.

> >

> > Is there anyone else on the list that has Still's and does not have a

> rash

> > or swollen joint?

> >

> > Thanks

> >

> > Darv

> >

> >

[Guest guest]

Kirk - sometimes all of the opiods do absolutely nothing for my headaches

and oddly enough, the only thing that helps is using them along with

Excedrin (Not advil or Tyl). Only Excedrin (and I use the one for Tension

Headaches). And I take it with a 16 oz bottle of Coke. I know - not good

for us with the sugar... But the Caffine and Excedrin combo do something...

It's weird, but it works, along with the oxy and pain patch. I asked my doc

about it once and he said if it works, use it (as long as I'm not using it

every two hours). So try taking two extra strength Excedrin with a 16oz

coke - get the ice pack out and see what happens (use that acetametiphe

Excedrin - it works too).

-- Re: Still's or not Still's?

>

> I had some rashes, but they were faint and rare. One thing I can say from

> experience is if 4/5 say you have still, you probably do. This is a

> relatively new endeaver for most dr'd, and opinions vary wildy. The way I

> remember it is if you had " x " number of the symptoms, it is considered

> Stills.

> Jope this is readable (I'm totally out of it) and that it elps.

> Do tons of research, you'll find an answer & Dr. that you're comfortable

> with. Every good dr I ever had alwasy was trying to find out what I have,

> and I've been tested countless times. Stills is " best fit " to date, so I

> feel it's better than not having something to " chase after "

> Relax, learn what you can & most importantly, let your Dr'd investigate

> any & all possibilities. Who knows, you may find yuou have something les

> severe & more easily treated.

> Krik.

>

> On 02/01/2008, Darv <darvin@... <darvin%40comcast.net>> wrote:

> >

> > I have to admit I am really confused about my illness.

> >

> > I have had four rheumatologist tell me I had stills but the most recent

> > one

> > sort of changed her mind after seeing me the last time and said she

> > thought

> > I probably didn't have Still's. But if not Still's then what?

> >

> > I do not, nor have ever had the following:

> >

> > Rash

> > Swollen Joints

> >

> > Any severe pain above my waist

> >

> > What I have had:

> >

> > Fevers of up to 103F mostly occurring in the evenings that come and go.

> >

> > Pain in my legs from my ankles to my lower back. The worst being my

> > muscles but there is also joint pain.

> >

> > High WBC and ESR. The sed rate has at times been approaching 200.

> >

> > Is there anyone else on the list that has Still's and does not have a

> rash

> > or swollen joint?

> >

> > Thanks

> >

> > Darv

> >

> >

[Guest guest]

Kirk, this is going to sound weird; but if it would help, I would hate to not

mention it.

My mother, who has Fibro, has suffered from migraines my entire life. Anyway,

she was so desperate when I was a kid to try anything and someone offered the

following advice. It worked! But, then we were out of apple cider vinegar and

she used white...well, it burnt her skin and she has been afraid to try it

again. But we did it lots of times before that with great success; this was 25

years ago, though, before stronger pain meds, so who knows. Good luck!

Take a long kitchen towel and fold it diagonally so that it is like a blindfold

except that it will be over your forehead, not your eyes. Soak the part that

will go around your forehead in apple cider vinegar then tie around your head as

tight as you possibly can (this was my job). Then, just try to hang in there

and I pray that it may help.

Also, I had migraines during my last two pregnancies and my OB suggested

caffeine, too. That's what helped me...pain meds and Pepsi combined. But then

my DC put me on something and they stopped happening completely. I think it was

Calcium Lactate, but I will call him tomorrow to find out. Maybe it will help,

maybe not. My headaches were probably caused by hormones due to the pregnancy

fact, but again...if it would help...

I'll be praying for you,

Jody

Re: Still's or not Still's?

>

> I had some rashes, but they were faint and rare. One thing I can say from

> experience is if 4/5 say you have still, you probably do. This is a

> relatively new endeaver for most dr'd, and opinions vary wildy. The way I

> remember it is if you had " x " number of the symptoms, it is considered

> Stills.

> Jope this is readable (I'm totally out of it) and that it elps.

> Do tons of research, you'll find an answer & Dr. that you're comfortable

> with. Every good dr I ever had alwasy was trying to find out what I have,

> and I've been tested countless times. Stills is " best fit " to date, so I

> feel it's better than not having something to " chase after "

> Relax, learn what you can & most importantly, let your Dr'd investigate

> any & all possibilities. Who knows, you may find yuou have something les

> severe & more easily treated.

> Krik.

>

> On 02/01/2008, Darv <darvincomcast (DOT) net <darvin%40comcast. net>> wrote:

> >

> > I have to admit I am really confused about my illness.

> >

> > I have had four rheumatologist tell me I had stills but the most recent

> > one

> > sort of changed her mind after seeing me the last time and said she

> > thought

> > I probably didn't have Still's. But if not Still's then what?

> >

> > I do not, nor have ever had the following:

> >

> > Rash

> > Swollen Joints

> >

> > Any severe pain above my waist

> >

> > What I have had:

> >

> > Fevers of up to 103F mostly occurring in the evenings that come and go.

> >

> > Pain in my legs from my ankles to my lower back. The worst being my

> > muscles but there is also joint pain.

> >

> > High WBC and ESR. The sed rate has at times been approaching 200.

> >

> > Is there anyone else on the list that has Still's and does not have a

> rash

> > or swollen joint?

> >

> > Thanks

> >

> > Darv

> >

> >

[Guest guest]

I've been ther & done that...didn't work. They found 3 things that worked

for me, Super high doses of Pred, Dilaudid & the oxy's (which I hate as they

take two hours to work and only last for 4-5 hours, and then your next

" bathroom experience " is going to be painful beyond beilief. An example

being that I took 80mg at 7:00 Am and finally fell asleep around 9:30 Am or

so. I slept great until about 1:30, and my headache was down to a 3 or 4

until about 3:00. I took another 80 @ 6:00 tonight, and was in agony until

9ish....and I slept great until now. My head feels pretty good right now but

I know in an hour or 2 I'll be screwed. That's why I was hoping my PCP

wouldn't make me go through this again.

When I was @ Jefferson (they use NO narcotics) it took them 13 days to

rid me of my headache (and it was one of the worst I had, even Dr. Young was

impressed) when they finally cranked 1000 mg or steroids into me by IV. The

down side to that were blood sugar checks every hour, insulin injections and

a hard crash as whoever wrote up the directions for home failed to address a

steroid taper which was one of the worst days of my life. They tried

everything. I'd get some response from a few drugs, but you're talking a

drop from a 9 to an 8 or so. I had the most eratic sleep patterns they ever

saw as I can't sleep with a headache for some reason. I have wiced dreams,

see things, and the like that keeps me wide awake as soon as the pain hits a

certain level. They literally ran out of tests they could do and had no

concrete answers. Dr. Young at that point told me I may very well have

something no-one has ever seen or identified before, and wasn't to keen on

what I would name it (think of me...you'll come pretty close to the name I'd

pick!!!!). I do wish I could see that guy more often, but financial

constraints prevent it. Hell, just to drive down & back for an appointment

(which does absolutely zero) cost about $100.00 between gas, tolls &

parking. Top that of with my extreme hatred of Philadelphia (filthy damn

place in spots with 50 assholes for every nice person you meet. I'm

convinced Jefferson has all of the nice ones, as they were great, but even

in a pizza shop I found one without looking as he didn't know how to ask for

the Hot Pepper shaker on my table so he stares at me and says ...and I quote

" you done with them peppers yet Mother F*******? " Don't ask me what stopped

me from hiting him in the head with them, cause til this dau I don't know.

My vision is also still off and my body hurts...not so much when I'm

moving (except my back/hips) but when I'm laying down the pain in my knees,

hips, feet etc becomes unbearable. Plus I am too tired and sick of

suffering. As bad as I hate the resort, I know that's where I should be, but

not wanting to piss my Dr off I'll wait until tomorrow morning and call him,

where he'll go from there.

Thanks for the reply, Kirk.

PS please dis-regard any typos or mispellings. I'm usually a stickler for

them but at the momenty I sure as hel ain't!!!

Read my signature at the bottom of the page....pretty much sums up the

meaning of life!!!! I'll even move it here as it isn't close: At least I

think I found the meaning of life!!!

*Everything in life sucks except what should.*

>

> Kirk - sometimes all of the opiods do absolutely nothing for my

> headaches

> and oddly enough, the only thing that helps is using them along with

> Excedrin (Not advil or Tyl). Only Excedrin (and I use the one for Tension

> Headaches). And I take it with a 16 oz bottle of Coke. I know - not good

> for us with the sugar... But the Caffine and Excedrin combo do

> something...

> It's weird, but it works, along with the oxy and pain patch. I asked my

> doc

> about it once and he said if it works, use it (as long as I'm not using it

> every two hours). So try taking two extra strength Excedrin with a 16oz

> coke - get the ice pack out and see what happens (use that acetametiphe

> Excedrin - it works too).

>

>

>

>

> -- Re: Still's or not Still's?

> >

> > I had some rashes, but they were faint and rare. One thing I can say

> from

> > experience is if 4/5 say you have still, you probably do. This is a

> > relatively new endeaver for most dr'd, and opinions vary wildy. The way

> I

> > remember it is if you had " x " number of the symptoms, it is considered

> > Stills.

> > Jope this is readable (I'm totally out of it) and that it elps.

> > Do tons of research, you'll find an answer & Dr. that you're comfortable

>

> > with. Every good dr I ever had alwasy was trying to find out what I

> have,

> > and I've been tested countless times. Stills is " best fit " to date, so I

>

> > feel it's better than not having something to " chase after "

> > Relax, learn what you can & most importantly, let your Dr'd investigate

> > any & all possibilities. Who knows, you may find yuou have something les

>

> > severe & more easily treated.

> > Krik.

> >

> > On 02/01/2008, Darv <darvin@...

<darvin%40comcast.net><darvin%40comcast.net>> wrote:

> > >

> > > I have to admit I am really confused about my illness.

> > >

> > > I have had four rheumatologist tell me I had stills but the most

> recent

> > > one

> > > sort of changed her mind after seeing me the last time and said she

> > > thought

> > > I probably didn't have Still's. But if not Still's then what?

> > >

> > > I do not, nor have ever had the following:

> > >

> > > Rash

> > > Swollen Joints

> > >

> > > Any severe pain above my waist

> > >

> > > What I have had:

> > >

> > > Fevers of up to 103F mostly occurring in the evenings that come and

> go.

> > >

> > > Pain in my legs from my ankles to my lower back. The worst being my

> > > muscles but there is also joint pain.

> > >

> > > High WBC and ESR. The sed rate has at times been approaching 200.

> > >

> > > Is there anyone else on the list that has Still's and does not have a

> > rash

> > > or swollen joint?

> > >

> > > Thanks

> > >

> > > Darv

> > >

> > >

[Guest guest]

I'll be the first to admit that caffeine is great on headaches, but only to

a point. Let's say I have a normal headache in the 4-6 catergory....caffeine

alone might get me by. Once they jump up a level or two or (worse) become a

9+++ I'm pretty screwed. The only thing that has been proven to work is

Dilaudid through an IV. I know..nasty drug, but it usually rids me of them

in 3-4 days instead of the double, triple or even quadruple amount of time

it has taken otherwise. This headache started on Dec. 26th (I am grateful

that I felt alright for Christmas..God answered that prayer) and turned

NASTY 3 days ago. Yesterday it bacame untolerable and has pretty much stayed

that way since (except the short amount of time when the pills work). In

dealing with this for the last 4 years (this month) I've become pretty adept

at knowing which ones are going to make me want to die, and this is one of

them. I've been through every single pain relief from aspirin, ibuprofin,

topomax, imitrex (the whole class of families for migraines, along with most

of the physcotics) through the light narcotics to the heavy ones. I've tried

hydrating the hell out of myself, tried not eating, smashed my head as hard

as I could off of the 8x8 wooden posts that are the support beams from my

basement to my upstairs (that helped, although all of my Dr's strongly

dis-approved of it). I've also tried herbal teas that people swore by,

ceratin foods, aviding certain foods....I've pretty much run the gamut, so

to speak.

I'm ready to break down if this is as bad tomorro morn as it has been

when I have to call my PCP back. I'm actually looking forward to the damn

resort as at least I know I'll be able to SLEEP!!!! I know that's one of the

major aggitating circumstances for me, but sleeping pills don't phase me.

Almost evry night I will go to bed around 9:30-10:30...wake up by

midnight-1:00 AM, sleep asap, back up within an hour...so on and so forth.

Other days I'll be so exhausted I'll pass out at 6:00 PM, sleep until 10:00,

back to sleep (but not necessarily able to sleep) until 11:00 or so, where

my normal sleep patterns take over. Yet, ifr I'm feeling well...once 7:00 Am

rolls around I can sleep well until noon or better. I've been to a sleep

specialist, and asked each of my dr's with no results. I have a CPAP, gave

that an honest try (6 mos) and it did zero to change this.

One thing most likely behind most of the headaches is my constant & total

exhaustion. It is worse in the late fall, winter & spring, but affects me in

the summer, just not as bad.

Oh well, I can't keep a train of thaught. Hasve a good night, Kirk.

>

> Kirk, this is going to sound weird; but if it would help, I would hate

> to not mention it.

>

> My mother, who has Fibro, has suffered from migraines my entire life.

> Anyway, she was so desperate when I was a kid to try anything and someone

> offered the following advice. It worked! But, then we were out of apple

> cider vinegar and she used white...well, it burnt her skin and she has been

> afraid to try it again. But we did it lots of times before that with great

> success; this was 25 years ago, though, before stronger pain meds, so who

> knows. Good luck!

>

> Take a long kitchen towel and fold it diagonally so that it is like a

> blindfold except that it will be over your forehead, not your eyes. Soak the

> part that will go around your forehead in apple cider vinegar then tie

> around your head as tight as you possibly can (this was my job). Then, just

> try to hang in there and I pray that it may help.

>

> Also, I had migraines during my last two pregnancies and my OB suggested

> caffeine, too. That's what helped me...pain meds and Pepsi combined. But

> then my DC put me on something and they stopped happening completely. I

> think it was Calcium Lactate, but I will call him tomorrow to find out.

> Maybe it will help, maybe not. My headaches were probably caused by hormones

> due to the pregnancy fact, but again...if it would help...

>

> I'll be praying for you,

> Jody

>

> Re: Still's or not Still's?

> >

> > I had some rashes, but they were faint and rare. One thing I can say

> from

> > experience is if 4/5 say you have still, you probably do. This is a

> > relatively new endeaver for most dr'd, and opinions vary wildy. The way

> I

> > remember it is if you had " x " number of the symptoms, it is considered

> > Stills.

> > Jope this is readable (I'm totally out of it) and that it elps.

> > Do tons of research, you'll find an answer & Dr. that you're comfortable

> > with. Every good dr I ever had alwasy was trying to find out what I

> have,

> > and I've been tested countless times. Stills is " best fit " to date, so I

> > feel it's better than not having something to " chase after "

> > Relax, learn what you can & most importantly, let your Dr'd investigate

> > any & all possibilities. Who knows, you may find yuou have something les

> > severe & more easily treated.

> > Krik.

> >

> > On 02/01/2008, Darv <darvincomcast (DOT) net <darvin%40comcast. net>> wrote:

> > >

> > > I have to admit I am really confused about my illness.

> > >

> > > I have had four rheumatologist tell me I had stills but the most

> recent

> > > one

> > > sort of changed her mind after seeing me the last time and said she

> > > thought

> > > I probably didn't have Still's. But if not Still's then what?

> > >

> > > I do not, nor have ever had the following:

> > >

> > > Rash

> > > Swollen Joints

> > >

> > > Any severe pain above my waist

> > >

> > > What I have had:

> > >

> > > Fevers of up to 103F mostly occurring in the evenings that come and

> go.

> > >

> > > Pain in my legs from my ankles to my lower back. The worst being my

> > > muscles but there is also joint pain.

> > >

> > > High WBC and ESR. The sed rate has at times been approaching 200.

> > >

> > > Is there anyone else on the list that has Still's and does not have a

> > rash

> > > or swollen joint?

> > >

> > > Thanks

> > >

> > > Darv

> > >

> > >

[Guest guest]

Hi Darv, I've had the rash since the git go...but the swollen joints did not

come til later for me. If there's any doubt about what you have and the Dr has

some ideas to test for them, by all means do it! I'm afraid you'll find that

everyone's different in how Still's presents itself. Including the severity,

duration and even the bits and pieces. Maybe as they find out more about

Still's, they'll find different diseases within the disease. Good luck!

Still's or not Still's?

I have to admit I am really confused about my illness.

I have had four rheumatologist tell me I had stills but the most recent one

sort of changed her mind after seeing me the last time and said she thought

I probably didn't have Still's. But if not Still's then what?

I do not, nor have ever had the following:

Rash

Swollen Joints

Any severe pain above my waist

What I have had:

Fevers of up to 103F mostly occurring in the evenings that come and go.

Pain in my legs from my ankles to my lower back. The worst being my

muscles but there is also joint pain.

High WBC and ESR. The sed rate has at times been approaching 200.

Is there anyone else on the list that has Still's and does not have a rash

or swollen joint?

Thanks

Darv

[Guest guest]

Actually, I understand, Didaudid is about the only drug that helps me other

than the Actiq. Has your doctor considered prescribing Actiq to you (which

is Fentanyl based like the patch you are on). They start at 200mcg, but my

guess is you would need a higher dose. I was up to 1200mcg but my new

insurance approved 4 a day of 800 mcg. They work for pretty much everything

Sometimes I still need to get IV Dilaudid or a shot of Diaudid with

phenegren.

I think you should ask your PCP to try just a few ACTIQ like 800mcg... And

see if they help.. Maybe you can avoid the resort that way (and killing your

kidneys...).

He should be able to rush and approval through on your insurance if it is

needed.

The state you are in - it's like asking to save money at this point...

The oral Dilaudid never does anything for me - how about you?

-- Re: Still's or not Still's?

I'll be the first to admit that caffeine is great on headaches, but only to

a point. Let's say I have a normal headache in the 4-6 catergory....caffeine

alone might get me by. Once they jump up a level or two or (worse) become a

9+++ I'm pretty screwed. The only thing that has been proven to work is

Dilaudid through an IV. I know..nasty drug, but it usually rids me of them

in 3-4 days instead of the double, triple or even quadruple amount of time

it has taken otherwise. This headache started on Dec. 26th (I am grateful

that I felt alright for Christmas..God answered that prayer) and turned

NASTY 3 days ago. Yesterday it bacame untolerable and has pretty much stayed

that way since (except the short amount of time when the pills work). In

dealing with this for the last 4 years (this month) I've become pretty adept

at knowing which ones are going to make me want to die, and this is one of

them. I've been through every single pain relief from aspirin, ibuprofin,

topomax, imitrex (the whole class of families for migraines, along with most

of the physcotics) through the light narcotics to the heavy ones. I've tried

hydrating the hell out of myself, tried not eating, smashed my head as hard

as I could off of the 8x8 wooden posts that are the support beams from my

basement to my upstairs (that helped, although all of my Dr's strongly

dis-approved of it). I've also tried herbal teas that people swore by,

ceratin foods, aviding certain foods....I've pretty much run the gamut, so

to speak.

I'm ready to break down if this is as bad tomorro morn as it has been

when I have to call my PCP back. I'm actually looking forward to the damn

resort as at least I know I'll be able to SLEEP!!!! I know that's one of the

major aggitating circumstances for me, but sleeping pills don't phase me.

Almost evry night I will go to bed around 9:30-10:30...wake up by

midnight-1:00 AM, sleep asap, back up within an hour...so on and so forth.

Other days I'll be so exhausted I'll pass out at 6:00 PM, sleep until 10:00,

back to sleep (but not necessarily able to sleep) until 11:00 or so, where

my normal sleep patterns take over. Yet, ifr I'm feeling well...once 7:00 Am

rolls around I can sleep well until noon or better. I've been to a sleep

specialist, and asked each of my dr's with no results. I have a CPAP, gave

that an honest try (6 mos) and it did zero to change this.

One thing most likely behind most of the headaches is my constant & total

exhaustion. It is worse in the late fall, winter & spring, but affects me in

the summer, just not as bad.

Oh well, I can't keep a train of thaught. Hasve a good night, Kirk.

>

> Kirk, this is going to sound weird; but if it would help, I would hate

> to not mention it.

>

> My mother, who has Fibro, has suffered from migraines my entire life.

> Anyway, she was so desperate when I was a kid to try anything and someone

> offered the following advice. It worked! But, then we were out of apple

> cider vinegar and she used white...well, it burnt her skin and she has

been

> afraid to try it again. But we did it lots of times before that with great

> success; this was 25 years ago, though, before stronger pain meds, so who

> knows. Good luck!

>

> Take a long kitchen towel and fold it diagonally so that it is like a

> blindfold except that it will be over your forehead, not your eyes. Soak

the

> part that will go around your forehead in apple cider vinegar then tie

> around your head as tight as you possibly can (this was my job). Then,

just

> try to hang in there and I pray that it may help.

>

> Also, I had migraines during my last two pregnancies and my OB suggested

> caffeine, too. That's what helped me...pain meds and Pepsi combined. But

> then my DC put me on something and they stopped happening completely. I

> think it was Calcium Lactate, but I will call him tomorrow to find out.

> Maybe it will help, maybe not. My headaches were probably caused by

hormones

> due to the pregnancy fact, but again...if it would help...

>

> I'll be praying for you,

> Jody

>

> Re: Still's or not Still's?

> >

> > I had some rashes, but they were faint and rare. One thing I can say

> from

> > experience is if 4/5 say you have still, you probably do. This is a

> > relatively new endeaver for most dr'd, and opinions vary wildy. The way

> I

> > remember it is if you had " x " number of the symptoms, it is considered

> > Stills.

> > Jope this is readable (I'm totally out of it) and that it elps.

> > Do tons of research, you'll find an answer & Dr. that you're comfortable

> > with. Every good dr I ever had alwasy was trying to find out what I

> have,

> > and I've been tested countless times. Stills is " best fit " to date, so I

> > feel it's better than not having something to " chase after "

> > Relax, learn what you can & most importantly, let your Dr'd investigate

> > any & all possibilities. Who knows, you may find yuou have something les

> > severe & more easily treated.

> > Krik.

> >

> > On 02/01/2008, Darv <darvincomcast (DOT) net <darvin%40comcast. net>> wrote:

> > >

> > > I have to admit I am really confused about my illness.

> > >

> > > I have had four rheumatologist tell me I had stills but the most

> recent

> > > one

> > > sort of changed her mind after seeing me the last time and said she

> > > thought

> > > I probably didn't have Still's. But if not Still's then what?

> > >

> > > I do not, nor have ever had the following:

> > >

> > > Rash

> > > Swollen Joints

> > >

> > > Any severe pain above my waist

> > >

> > > What I have had:

> > >

> > > Fevers of up to 103F mostly occurring in the evenings that come and

> go.

> > >

> > > Pain in my legs from my ankles to my lower back. The worst being my

> > > muscles but there is also joint pain.

> > >

> > > High WBC and ESR. The sed rate has at times been approaching 200.

> > >

> > > Is there anyone else on the list that has Still's and does not have a

> > rash

> > > or swollen joint?

> > >

> > > Thanks

> > >

> > > Darv

> > >

> > >

[Guest guest]

Hi Darv,

In my first few years, I had absolutely no rash and no swollen

joints. In fact, the only thing I did have was a very high ESR and

severe pain in my legs. Up and down both legs, more muscle pain.

Many docs said they didn't nkow what my problem is. one doc took a

gamble and said Stills. My current doc still isn't 100% sure it's

Stills, but the meds work on me and I keep getting more symptoms

that are indicative of Stills - such as swollen joints (hands and

feet) and i realize I actually do have a rash. It's on my chest,

comes out only when I have a fever. I am fairly red skinned so I

never really associated it before. So you may in fact have a rash

and just not really realize it. I also get the Lupus butterfly on

my face when I have a fever (but I do not have Lupus).

My thought - who cares what the diagnosis is as long as you are

being treated and the treatment is helping. Yes I do know what it's

like to not have a diagnosis, went many years like that. It was

mentally difficult. but I also wasnt' getting treatment at that

time either. I hope your new RD is at least treating you.

Houston

[Guest guest]

Is that Narcotic???? I've never heard of it. BTW...do opiates hurt your

kidneys??? You have just opened a can of worms in my mind.......please

explain further when you get to it.

No, oral dilaudid never did anything for me at all. Hell, Oxy doesn't do

much either, but at least it helps...if even only a little bit. Add to that

the Fentanyl patches I'm using are a few years old...none of my Dr's wants

to prescribe them, although I told my pain Dr the last time I saw him I'm

getting to the verge of not being able to take the lower back pain at times

anymore, and they can;t/won't do any injections due to my having

osteoporosis. I almost wish I had one of those " pushover " Dr's, but at

least I know the ones I have work for me, and give a shit.

Kirk

>

> Actually, I understand, Didaudid is about the only drug that helps me

> other

> than the Actiq. Has your doctor considered prescribing Actiq to you (which

> is Fentanyl based like the patch you are on). They start at 200mcg, but my

> guess is you would need a higher dose. I was up to 1200mcg but my new

> insurance approved 4 a day of 800 mcg. They work for pretty much

> everything

> Sometimes I still need to get IV Dilaudid or a shot of Diaudid with

> phenegren.

>

> I think you should ask your PCP to try just a few ACTIQ like 800mcg... And

> see if they help.. Maybe you can avoid the resort that way (and killing

> your

> kidneys...).

>

> He should be able to rush and approval through on your insurance if it is

> needed.

> The state you are in - it's like asking to save money at this point...

>

> The oral Dilaudid never does anything for me - how about you?

>

>

> -- Re: Still's or not Still's?

>

> I'll be the first to admit that caffeine is great on headaches, but only

> to

> a point. Let's say I have a normal headache in the 4-6

> catergory....caffeine

> alone might get me by. Once they jump up a level or two or (worse) become

> a

> 9+++ I'm pretty screwed. The only thing that has been proven to work is

> Dilaudid through an IV. I know..nasty drug, but it usually rids me of them

>

> in 3-4 days instead of the double, triple or even quadruple amount of time

>

> it has taken otherwise. This headache started on Dec. 26th (I am grateful

> that I felt alright for Christmas..God answered that prayer) and turned

> NASTY 3 days ago. Yesterday it bacame untolerable and has pretty much

> stayed

> that way since (except the short amount of time when the pills work). In

> dealing with this for the last 4 years (this month) I've become pretty

> adept

> at knowing which ones are going to make me want to die, and this is one of

>

> them. I've been through every single pain relief from aspirin, ibuprofin,

> topomax, imitrex (the whole class of families for migraines, along with

> most

> of the physcotics) through the light narcotics to the heavy ones. I've

> tried

> hydrating the hell out of myself, tried not eating, smashed my head as

> hard

> as I could off of the 8x8 wooden posts that are the support beams from my

> basement to my upstairs (that helped, although all of my Dr's strongly

> dis-approved of it). I've also tried herbal teas that people swore by,

> ceratin foods, aviding certain foods....I've pretty much run the gamut, so

>

> to speak.

> I'm ready to break down if this is as bad tomorro morn as it has been

> when I have to call my PCP back. I'm actually looking forward to the damn

> resort as at least I know I'll be able to SLEEP!!!! I know that's one of

> the

> major aggitating circumstances for me, but sleeping pills don't phase me.

> Almost evry night I will go to bed around 9:30-10:30...wake up by

> midnight-1:00 AM, sleep asap, back up within an hour...so on and so forth.

>

> Other days I'll be so exhausted I'll pass out at 6:00 PM, sleep until

> 10:00,

> back to sleep (but not necessarily able to sleep) until 11:00 or so, where

>

> my normal sleep patterns take over. Yet, ifr I'm feeling well...once 7:00

> Am

> rolls around I can sleep well until noon or better. I've been to a sleep

> specialist, and asked each of my dr's with no results. I have a CPAP, gave

>

> that an honest try (6 mos) and it did zero to change this.

> One thing most likely behind most of the headaches is my constant & total

> exhaustion. It is worse in the late fall, winter & spring, but affects me

> in

> the summer, just not as bad.

> Oh well, I can't keep a train of thaught. Hasve a good night, Kirk.

>

> On 03/01/2008, Jody Klein <jodyscout@... <jodyscout%40yahoo.com>>

> wrote:

> >

> > Kirk, this is going to sound weird; but if it would help, I would hate

> > to not mention it.

> >

> > My mother, who has Fibro, has suffered from migraines my entire life.

> > Anyway, she was so desperate when I was a kid to try anything and

> someone

> > offered the following advice. It worked! But, then we were out of apple

> > cider vinegar and she used white...well, it burnt her skin and she has

> been

> > afraid to try it again. But we did it lots of times before that with

> great

> > success; this was 25 years ago, though, before stronger pain meds, so

> who

> > knows. Good luck!

> >

> > Take a long kitchen towel and fold it diagonally so that it is like a

> > blindfold except that it will be over your forehead, not your eyes. Soak

> the

> > part that will go around your forehead in apple cider vinegar then tie

> > around your head as tight as you possibly can (this was my job). Then,

> just

> > try to hang in there and I pray that it may help.

> >

> > Also, I had migraines during my last two pregnancies and my OB suggested

>

> > caffeine, too. That's what helped me...pain meds and Pepsi combined. But

>

> > then my DC put me on something and they stopped happening completely. I

> > think it was Calcium Lactate, but I will call him tomorrow to find out.

> > Maybe it will help, maybe not. My headaches were probably caused by

> hormones

> > due to the pregnancy fact, but again...if it would help...

> >

> > I'll be praying for you,

> > Jody

> >

> > Re: Still's or not Still's?

> > >

> > > I had some rashes, but they were faint and rare. One thing I can say

> > from

> > > experience is if 4/5 say you have still, you probably do. This is a

> > > relatively new endeaver for most dr'd, and opinions vary wildy. The

> way

> > I

> > > remember it is if you had " x " number of the symptoms, it is considered

>

> > > Stills.

> > > Jope this is readable (I'm totally out of it) and that it elps.

> > > Do tons of research, you'll find an answer & Dr. that you're

> comfortable

> > > with. Every good dr I ever had alwasy was trying to find out what I

> > have,

> > > and I've been tested countless times. Stills is " best fit " to date, so

> I

> > > feel it's better than not having something to " chase after "

> > > Relax, learn what you can & most importantly, let your Dr'd

> investigate

> > > any & all possibilities. Who knows, you may find yuou have something

> les

> > > severe & more easily treated.

> > > Krik.

> > >

> > > On 02/01/2008, Darv <darvincomcast (DOT) net <darvin%40comcast. net>>

> wrote:

> > > >

> > > > I have to admit I am really confused about my illness.

> > > >

> > > > I have had four rheumatologist tell me I had stills but the most

> > recent

> > > > one

> > > > sort of changed her mind after seeing me the last time and said she

> > > > thought

> > > > I probably didn't have Still's. But if not Still's then what?

> > > >

> > > > I do not, nor have ever had the following:

> > > >

> > > > Rash

> > > > Swollen Joints

> > > >

> > > > Any severe pain above my waist

> > > >

> > > > What I have had:

> > > >

> > > > Fevers of up to 103F mostly occurring in the evenings that come and

> > go.

> > > >

> > > > Pain in my legs from my ankles to my lower back. The worst being my

> > > > muscles but there is also joint pain.

> > > >

> > > > High WBC and ESR. The sed rate has at times been approaching 200.

> > > >

> > > > Is there anyone else on the list that has Still's and does not have

> a

> > > rash

> > > > or swollen joint?

> > > >

> > > > Thanks

> > > >

> > > > Darv

> > > >

> > > >

[Guest guest]

Kirk

Actiq is an Opiod but it isn't suppose to hurt your kidneys..

It is in the form of a lollipop. You can find it on the Internet. There is a

new one out called

Fentora also that is also Fentanyl based.

I think you need to go to pain doc - do you have a pain doctor close by -

these doctors understand

These meds better than RD's and PCP's. (Although you can always ask your RD

and PCP)

Why don't your docs want to Prescribe Duragesic?

If you want to know more, you can email me directly at allison@...

-- Re: Still's or not Still's?

>

> I'll be the first to admit that caffeine is great on headaches, but only

> to

> a point. Let's say I have a normal headache in the 4-6

> catergory....caffeine

> alone might get me by. Once they jump up a level or two or (worse) become

> a

> 9+++ I'm pretty screwed. The only thing that has been proven to work is

> Dilaudid through an IV. I know..nasty drug, but it usually rids me of them

>

> in 3-4 days instead of the double, triple or even quadruple amount of time

>

> it has taken otherwise. This headache started on Dec. 26th (I am grateful

> that I felt alright for Christmas..God answered that prayer) and turned

> NASTY 3 days ago. Yesterday it bacame untolerable and has pretty much

> stayed

> that way since (except the short amount of time when the pills work). In

> dealing with this for the last 4 years (this month) I've become pretty

> adept

> at knowing which ones are going to make me want to die, and this is one of

>

> them. I've been through every single pain relief from aspirin, ibuprofin,

> topomax, imitrex (the whole class of families for migraines, along with

> most

> of the physcotics) through the light narcotics to the heavy ones. I've

> tried

> hydrating the hell out of myself, tried not eating, smashed my head as

> hard

> as I could off of the 8x8 wooden posts that are the support beams from my

> basement to my upstairs (that helped, although all of my Dr's strongly

> dis-approved of it). I've also tried herbal teas that people swore by,

> ceratin foods, aviding certain foods....I've pretty much run the gamut, so

>

> to speak.

> I'm ready to break down if this is as bad tomorro morn as it has been

> when I have to call my PCP back. I'm actually looking forward to the damn

> resort as at least I know I'll be able to SLEEP!!!! I know that's one of

> the

> major aggitating circumstances for me, but sleeping pills don't phase me.

> Almost evry night I will go to bed around 9:30-10:30...wake up by

> midnight-1:00 AM, sleep asap, back up within an hour...so on and so forth.

>

> Other days I'll be so exhausted I'll pass out at 6:00 PM, sleep until

> 10:00,

> back to sleep (but not necessarily able to sleep) until 11:00 or so, where

>

> my normal sleep patterns take over. Yet, ifr I'm feeling well...once 7:00

> Am

> rolls around I can sleep well until noon or better. I've been to a sleep

> specialist, and asked each of my dr's with no results. I have a CPAP, gave

>

> that an honest try (6 mos) and it did zero to change this.

> One thing most likely behind most of the headaches is my constant & total

> exhaustion. It is worse in the late fall, winter & spring, but affects me

> in

> the summer, just not as bad.

> Oh well, I can't keep a train of thaught. Hasve a good night, Kirk.

>

> On 03/01/2008, Jody Klein <jodyscout@... <jodyscout%40yahoo.com>>

> wrote:

> >

> > Kirk, this is going to sound weird; but if it would help, I would hate

> > to not mention it.

> >

> > My mother, who has Fibro, has suffered from migraines my entire life.

> > Anyway, she was so desperate when I was a kid to try anything and

> someone

> > offered the following advice. It worked! But, then we were out of apple

> > cider vinegar and she used white...well, it burnt her skin and she has

> been

> > afraid to try it again. But we did it lots of times before that with

> great

> > success; this was 25 years ago, though, before stronger pain meds, so

> who

> > knows. Good luck!

> >

> > Take a long kitchen towel and fold it diagonally so that it is like a

> > blindfold except that it will be over your forehead, not your eyes. Soak

> the

> > part that will go around your forehead in apple cider vinegar then tie

> > around your head as tight as you possibly can (this was my job). Then,

> just

> > try to hang in there and I pray that it may help.

> >

> > Also, I had migraines during my last two pregnancies and my OB suggested

>

> > caffeine, too. That's what helped me...pain meds and Pepsi combined. But

>

> > then my DC put me on something and they stopped happening completely. I

> > think it was Calcium Lactate, but I will call him tomorrow to find out.

> > Maybe it will help, maybe not. My headaches were probably caused by

> hormones

> > due to the pregnancy fact, but again...if it would help...

> >

> > I'll be praying for you,

> > Jody

> >

> > Re: Still's or not Still's?

> > >

> > > I had some rashes, but they were faint and rare. One thing I can say

> > from

> > > experience is if 4/5 say you have still, you probably do. This is a

> > > relatively new endeaver for most dr'd, and opinions vary wildy. The

> way

> > I

> > > remember it is if you had " x " number of the symptoms, it is considered

>

> > > Stills.

> > > Jope this is readable (I'm totally out of it) and that it elps.

> > > Do tons of research, you'll find an answer & Dr. that you're

> comfortable

> > > with. Every good dr I ever had alwasy was trying to find out what I

> > have,

> > > and I've been tested countless times. Stills is " best fit " to date, so

> I

> > > feel it's better than not having something to " chase after "

> > > Relax, learn what you can & most importantly, let your Dr'd

> investigate

> > > any & all possibilities. Who knows, you may find yuou have something

> les

> > > severe & more easily treated.

> > > Krik.

> > >

> > > On 02/01/2008, Darv <darvincomcast (DOT) net <darvin%40comcast. net>>

> wrote:

> > > >

> > > > I have to admit I am really confused about my illness.

> > > >

> > > > I have had four rheumatologist tell me I had stills but the most

> > recent

> > > > one

> > > > sort of changed her mind after seeing me the last time and said she

> > > > thought

> > > > I probably didn't have Still's. But if not Still's then what?

> > > >

> > > > I do not, nor have ever had the following:

> > > >

> > > > Rash

> > > > Swollen Joints

> > > >

> > > > Any severe pain above my waist

> > > >

> > > > What I have had:

> > > >

> > > > Fevers of up to 103F mostly occurring in the evenings that come and

> > go.

> > > >

> > > > Pain in my legs from my ankles to my lower back. The worst being my

> > > > muscles but there is also joint pain.

> > > >

> > > > High WBC and ESR. The sed rate has at times been approaching 200.

> > > >

> > > > Is there anyone else on the list that has Still's and does not have

> a

> > > rash

> > > > or swollen joint?

> > > >

> > > > Thanks

> > > >

> > > > Darv

> > > >

> > > >

[Guest guest]

It's been hard to know what to believe. I know I have severe pain.

Especially in my legs. I do get fevers but they are rare only occurring

about once a year. They put me on prednisone and methotrexate. Neither

of which alleviated any of the pain though the fevers did go away almost

immediately. The prednisone caused me to gain 35 lbs in just a few weeks

so I stopped taking it. I've since been taking Norco and Valium for sleep

but recently tapered off the Valium. The Norco just doesn't cut it any

longer and work is becoming increasingly harder and harder to do. I wake

up in the AM with very stiff muscles and joints which turns in to pain

almost immediately. It takes hot towels and a couple of Norco and about 2

hours just to get ready to leave the house and it's getting worse. My

docs have not been very helpful. I'm not willing to go back on

prednisone or methotrexate but am not sure what else there is to try.

Thanks for the feedback. I guess I realize that I don't have to have the

rashes or the swollen joints to have the disease but it sure seems odd being

on this list and hearing about them so much.

Regards,

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Bouldin

Sent: Thursday, January 03, 2008 3:23 AM

To: Stillsdisease

Subject: Re: Still's or not Still's?

Hi Darv, I've had the rash since the git go...but the swollen joints did not

come til later for me. If there's any doubt about what you have and the Dr

has some ideas to test for them, by all means do it! I'm afraid you'll find

that everyone's different in how Still's presents itself. Including the

severity, duration and even the bits and pieces. Maybe as they find out more

about Still's, they'll find different diseases within the disease. Good

luck!

[Guest guest]

Darv,

Right now I am on 15mg. of methotrexate once a week  and 15 mg of prednisone

every day   plus other pills for other problems...At first  I lost 28 lbs with

this disease but it is slowly coming back   thanks to the prednisone...i am

starting to watch my salt intake so i dont keep gaining it...we will see.

How much metho and pred. were u on?

Diane  42

It's been hard to know what to believe. I know I have severe pain.

Especially in my legs. I do get fevers but they are rare only occurring

about once a year. They put me on prednisone and methotrexate. Neither

of which alleviated any of the pain though the fevers did go away almost

immediately. The prednisone caused me to gain 35 lbs in just a few weeks

so I stopped taking it. I've since been taking Norco and Valium for sleep

but recently tapered off the Valium. The Norco just doesn't cut it any

longer and work is becoming increasingly harder and harder to do. I wake

up in the AM with very stiff muscles and joints which turns in to pain

almost immediately. It takes hot towels and a couple of Norco and about 2

hours just to get ready to leave the house and it's getting worse. My

docs have not been very helpful. I'm not willing to go back on

prednisone or methotrexate but am not sure what else there is to try.

Thanks for the feedback. I guess I realize that I don't have to have the

rashes or the swollen joints to have the disease but it sure seems odd being

on this list and hearing about them so much.

Regards,

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Bouldin

Sent: Thursday, January 03, 2008 3:23 AM

To: Stillsdisease

Subject: Re: Still's or not Still's?

Hi Darv, I've had the rash since the git go...but the swollen joints did not

come til later for me. If there's any doubt about what you have and the Dr

has some ideas to test for them, by all means do it! I'm afraid you'll find

that everyone's different in how Still's presents itself. Including the

severity, duration and even the bits and pieces. Maybe as they find out more

about Still's, they'll find different diseases within the disease. Good

luck!

[Guest guest]

Hi Darv, I too am in the middle of the debate of does she or doesnt she have

Stills.

My onset happened quickly over a 2 day period.

Fever 102F

ESR-117

WBC-18,000

My entire body was swollen like the Pilsbury Dough Boy's sister and I could not

move anything.

I was in the hospital a week on 1200mg of steroids. The hospital did not know

what the problem was.

I linked up with a infectious disease doc who felt I had Stills but now says

that I wouldnt be able to get off the prednisone if it were Stills. Im down to 2

mg of prednisone now. This doc also found my ferritin levels were very high.

The Rumy never did think it was Stills

This is 6 months later and all my blood work is normal. Im trying another

specialist soon.

Its been a nightmare of a ride and my heart goes out to everyone here.

Blessings and taake care, Donna

Still's or not Still's?

I have to admit I am really confused about my illness.

I have had four rheumatologist tell me I had stills but the most recent one

sort of changed her mind after seeing me the last time and said she thought

I probably didn't have Still's. But if not Still's then what?

I do not, nor have ever had the following:

Rash

Swollen Joints

Any severe pain above my waist

What I have had:

Fevers of up to 103F mostly occurring in the evenings that come and go.

Pain in my legs from my ankles to my lower back. The worst being my

muscles but there is also joint pain.

High WBC and ESR. The sed rate has at times been approaching 200.

Is there anyone else on the list that has Still's and does not have a rash

or swollen joint?

Thanks

Darv

[Guest guest]

Donna,

Those labs look an awful like an awful lot of ours. Ferritin being

high is apparently something new that doctor's are considering a

marker.

And BTW, i am NOT on prednisone. I can't handle it. And I am doing

fairly okay with my other meds. So yes, you can be off the pred and

tackle Stills. I may not ever go into remission, and i may never get

quick relief by upping pred, but slow and steady has helped me at

least maintain the race.

Doctor's...what do they know?!

Houston

[Guest guest]

Sounds very similar but I had no swelling anywhere and never have. My

fever reached a peak of 104 but hung mostly around 102 to 103. Sed rate

has varied greatly from a low of 17 to a high of I think 190 or there about.

I had a high WBC but I don't recall the range. My ferritin levels were

always normal. Mine illness came on slowly and started with pain in my

right ankle. Eventually both ankles started hurting and from there is

progressed upwards to my calves, knees, thighs at which point I developed

the daily fevers at about 3Pm each day. My boss was very critical at my

leaving early each day feeling sick but seemingly well the next morning.

Spring time seems to be when I flare the worst up until recently. Recently

the pain has just been getting worse and worse and I have been taking more

and more Norco to be able to work.

I mentioned it to my boss that my arthritis had gotten bad again. He

commented that he has a lot of aches and pains but unlike me is unwilling to

take any pain medication for it and thinks I should follow suit. I really

don't think he understands just how bad this is and I felt like he was

putting me down or saying I was somehow faking. He even recommend a book

called the Mind Body Prescription so I bought it. It basically states that

I am sick because I think I am sick and if I simply think I am well, I will

be. I fear I may lose my job at some point given his belief that this is

somehow my fault.

Thanks for the feedback. It helps to know this isn't just in my head.

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Thad Raczkowski

Sent: Friday, January 04, 2008 9:19 AM

To: Stillsdisease

Subject: Re: Still's or not Still's?

Hi Darv, I too am in the middle of the debate of does she or doesnt she have

Stills.

My onset happened quickly over a 2 day period.

Fever 102F

ESR-117

WBC-18,000

My entire body was swollen like the Pilsbury Dough Boy's sister and I could

not move anything.

I was in the hospital a week on 1200mg of steroids. The hospital did not

know what the problem was.

I linked up with a infectious disease doc who felt I had Stills but now says

that I wouldnt be able to get off the prednisone if it were Stills. Im down

to 2 mg of prednisone now. This doc also found my ferritin levels were very

high.

The Rumy never did think it was Stills

This is 6 months later and all my blood work is normal. Im trying another

specialist soon.

Its been a nightmare of a ride and my heart goes out to everyone here.

Blessings and taake care, Donna

[Guest guest]

 It basically states that

I am sick because I think I am sick and if I simply think I am well, I will

be.

I hate that when people say that...''just 'will it out''   My dad, mom and

recently my brother passed away from cancer and I remember people saying that

attitude is a big factor and if they want to get rid of it they can...B.S.!!! Do

you really thinl people want cancer and to die and leave wife/kids behind????  

 GRRRRRR that makes me mad!

 I fear I may lose my job at some point given his belief that this is

somehow my fault.  

Then I would sue the b- - - - - -!!  

Thanks for the feedback. It helps to know this isn't just in my head.  

No it is NOT!!

Diane  42

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Thad Raczkowski

Sent: Friday, January 04, 2008 9:19 AM

To: Stillsdisease

Subject: Re: Still's or not Still's?

Hi Darv, I too am in the middle of the debate of does she or doesnt she have

Stills.

My onset happened quickly over a 2 day period.

Fever 102F

ESR-117

WBC-18,000

My entire body was swollen like the Pilsbury Dough Boy's sister and I could

not move anything.

I was in the hospital a week on 1200mg of steroids. The hospital did not

know what the problem was.

I linked up with a infectious disease doc who felt I had Stills but now says

that I wouldnt be able to get off the prednisone if it were Stills. Im down

to 2 mg of prednisone now. This doc also found my ferritin levels were very

high.

The Rumy never did think it was Stills

This is 6 months later and all my blood work is normal. Im trying another

specialist soon.

Its been a nightmare of a ride and my heart goes out to everyone here.

Blessings and taake care, Donna

[Guest guest]

Diane,

I can’t recall for sure. I think it was around 20mg of Prednisone at the

high point and as for the methotrexate I can only remember that I was at 7 pills

on one day each week. I’d take the 7 pills all at once then not take it

again for a week. The three days following the dosage were horrible and I

barely had any strength at all. I remember trying to walk around the block one

or two times and not making it. I was exhausted and I have a sit down job.

I told the doc I had to stop the drugs. He put me on Trilisate which kept the

fevers in check but didn’t do much for the pain. Nothing seemed to help the

pain except Vicodin at the time. I became concerned about the amount of

Tylenol so I asked my doc for Norco.

My previous recently prescribed me Morphine Sulfate which worked GREAT. I

didn’t get the high feeling and the pain was gone. I thought it was great

till 4 days in to taking it I had severe abdominal pain and ended up in the ER

where they had to sedate me. So I went back on Norco. My new PCP said I was

taking too much Norco (6 to 8 pills a day) and prescribed me Methadone but I

have been too afraid to take it just yet. I see a pain management doctor on

the 14th and will talk to them then. Morphine shots made me very nauseous and

it sounds like Methadone will do the same so I am not too hip on taking them.

I’ve read about patches and that seems like a good way to avoid the stomach

pain but I don’t know if my docs will go along with it. Even the norco

bothers me these days.

Thanks

Darv

From: Stillsdisease [mailto:Stillsdisease ] On

Behalf Of tototoo42@...

Sent: Thursday, January 03, 2008 9:50 PM

To: Stillsdisease

Subject: Re: Still's or not Still's?

Darv,

Right now I am on 15mg. of methotrexate once a week and 15 mg of prednisone

every day plus other pills for other problems...At first I lost 28 lbs with

this disease but it is slowly coming back thanks to the prednisone...i am

starting to watch my salt intake so i dont keep gaining it...we will see.

How much metho and pred. were u on?

Diane 42

[Guest guest]

Hi Darv, Elly here. I just read your post about your boss being suspicious about

you being sick.Sounds exactly like my original story.I decided to take a summer

off to get to as many Dr's as I could and find out what was wrong with me.My

boss called me at the beginning of August and everyone was tired of doing my job

and I had til Monday to decide if I still wanted my job! I knew I had lots of

appts. coming up and likely wouldn't be given the days off,so I had to quit,it

broke my heart,but I couldn't control the pain all day.Have you gotten any

brochures yet from Bob?You could try giving your boss one and see if that makes

any difference.I wish you luck, I know it's hard.

Elly

Darv wrote:

Sounds very similar but I had no swelling anywhere and never have. My

fever reached a peak of 104 but hung mostly around 102 to 103. Sed rate

has varied greatly from a low of 17 to a high of I think 190 or there about.

I had a high WBC but I don't recall the range. My ferritin levels were

always normal. Mine illness came on slowly and started with pain in my

right ankle. Eventually both ankles started hurting and from there is

progressed upwards to my calves, knees, thighs at which point I developed

the daily fevers at about 3Pm each day. My boss was very critical at my

leaving early each day feeling sick but seemingly well the next morning.

Spring time seems to be when I flare the worst up until recently. Recently

the pain has just been getting worse and worse and I have been taking more

and more Norco to be able to work.

I mentioned it to my boss that my arthritis had gotten bad again. He

commented that he has a lot of aches and pains but unlike me is unwilling to

take any pain medication for it and thinks I should follow suit. I really

don't think he understands just how bad this is and I felt like he was

putting me down or saying I was somehow faking. He even recommend a book

called the Mind Body Prescription so I bought it. It basically states that

I am sick because I think I am sick and if I simply think I am well, I will

be. I fear I may lose my job at some point given his belief that this is

somehow my fault.

Thanks for the feedback. It helps to know this isn't just in my head.

Darv

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Thad Raczkowski

Sent: Friday, January 04, 2008 9:19 AM

To: Stillsdisease

Subject: Re: Still's or not Still's?

Hi Darv, I too am in the middle of the debate of does she or doesnt she have

Stills.

My onset happened quickly over a 2 day period.

Fever 102F

ESR-117

WBC-18,000

My entire body was swollen like the Pilsbury Dough Boy's sister and I could

not move anything.

I was in the hospital a week on 1200mg of steroids. The hospital did not

know what the problem was.

I linked up with a infectious disease doc who felt I had Stills but now says

that I wouldnt be able to get off the prednisone if it were Stills. Im down

to 2 mg of prednisone now. This doc also found my ferritin levels were very

high.

The Rumy never did think it was Stills

This is 6 months later and all my blood work is normal. Im trying another

specialist soon.

Its been a nightmare of a ride and my heart goes out to everyone here.

Blessings and taake care, Donna

[Guest guest]

Darv, Diane,

The pain patches are a great way to go, but you still use break through pain

meds.

If you are having stomach pain because of constipation, my doc gives me a rx

of Miralex (even though you can get it over the counter) it's cheaper to get

a rx of it. It works great and I haven't had any problems with it. You

just mix it up with juice in the morning.

I can't imagine your doc won't go for this if he gave you morphine sulf. I

ve used that for breakthrough pain.

Anyway - hang in there

-- Re: Still's or not Still's?

Darv,

Right now I am on 15mg. of methotrexate once a week and 15 mg of prednisone

every day plus other pills for other problems...At first I lost 28 lbs with

this disease but it is slowly coming back thanks to the prednisone...i am

starting to watch my salt intake so i dont keep gaining it...we will see.

How much metho and pred. were u on?

Diane 42

[Guest guest]

Darv - does your employer have Long Term Disability Insurance? Because if

they do, now is the time to do exactly what Elly is saying..

Having been and Executive in the company I was in, the painting is on the

wall... This guy is a creep.. You need to take care of yourself and get Dr

s behind you and say you can't work If you have Long Term Disability, you

might be able to have some income you aren't aware of.

There are Occupation Drs that evaluate how you are doing and will write

reports saying you can or can't work in addition to your own Dr.s I did

this. It nearly killed me because it's like a 7 hr day and then a 3 hr day.

But it was the best spent money because it not only helped proved how sick

I was to my LTD company, but also to win my SSDI case.

If you want to talk offline about this... Email me at allison@...

-- Re: Still's or not Still's?

Hi Darv, I too am in the middle of the debate of does she or doesnt she have

Stills.

My onset happened quickly over a 2 day period.

Fever 102F

ESR-117

WBC-18,000

My entire body was swollen like the Pilsbury Dough Boy's sister and I could

not move anything.

I was in the hospital a week on 1200mg of steroids. The hospital did not

know what the problem was.

I linked up with a infectious disease doc who felt I had Stills but now says

that I wouldnt be able to get off the prednisone if it were Stills. Im down

to 2 mg of prednisone now. This doc also found my ferritin levels were very

high.

The Rumy never did think it was Stills

This is 6 months later and all my blood work is normal. Im trying another

specialist soon.

Its been a nightmare of a ride and my heart goes out to everyone here.

Blessings and taake care, Donna

[Guest guest]

All- Amazing the differences in people (who happen to be bosses).

I have been flaring and was in real pain yesterday by the late

afternoon. After a meeting my boss took me aside and said, " you need

to go home while you can still drive. It is important that you take

care of yourself first. " It helps that she had colon cancer 2 years

ago and still suffers from some after effects. Of course, I have had

creeps for bosses before, pre Stills. Good to have an understanding

one at this time in my life. Also good to be able to have the ability

to telecommute at times.

To hell with the creeps, they will always be among us, I am afraid.

Tom from PA

>

> Darv - does your employer have Long Term Disability Insurance?

Because if

> they do, now is the time to do exactly what Elly is saying..

> Having been and Executive in the company I was in, the painting is on

the

> wall... This guy is a creep.. You need to take care of yourself and

get Dr

> s behind you and say you can't work If you have Long Term

Disability, you

> might be able to have some income you aren't aware of.

>

[Guest guest]

Isn't this the truth - my bosses were great... So patient../ they wanted me

back at any cost - unfortunately, it didn't work out - but they wanted the

best for me -- some bosses though - all they care about is the bottom line,

so you really have to be careful - understand your rights - make sure you

know what benefits they have because you may not even know that they have

these Long Term Disability policies and then you lose out...

-- Re: Still's or not Still's?

All- Amazing the differences in people (who happen to be bosses).

I have been flaring and was in real pain yesterday by the late

afternoon. After a meeting my boss took me aside and said, " you need

to go home while you can still drive. It is important that you take

care of yourself first. " It helps that she had colon cancer 2 years

ago and still suffers from some after effects. Of course, I have had

creeps for bosses before, pre Stills. Good to have an understanding

one at this time in my life. Also good to be able to have the ability

to telecommute at times.

To hell with the creeps, they will always be among us, I am afraid.

Tom from PA

>

> Darv - does your employer have Long Term Disability Insurance?

Because if

> they do, now is the time to do exactly what Elly is saying..

> Having been and Executive in the company I was in, the painting is on

the

> wall... This guy is a creep.. You need to take care of yourself and

get Dr

> s behind you and say you can't work If you have Long Term

Disability, you

> might be able to have some income you aren't aware of.

>