I'm back

[Guest guest]

Hi all my fellow stilligans. I've been gone for a

while. I've tried to read all the emails, but I just

can't keep up right now. I think about everyone so

often...., Brent, Sue #1 and #2 , Dennis and

and all of you...I know I've left some out.

For you women out there...I know this has been talked

about before but I would really appreciate any

additional feedback you ladies can give me. I have

only had Still's for a short time and I'm beginning to

notice a pattern. Each month, the week before my

cycle starts, I have a flare and it lasts through my

period. Then, I get better until the next month

before my cycle. I don't know how to stop this from

happening. Does anyone have ANY suggestions. My

flares are clearly related!!! I have tried getting

more rest, but that doesn't seem to help. I see Dr.

Cush Sept. 26th. I'm hoping for some answers from him

as well and I'll be sure to share them with everyone.

Another question...I have pain in my shoulders,

elbows, hips, knees, feet, hands, and back. I've had

them all x-rayed and nothing shows up except in my

back where the pain IS THE WORST! How is it that I

have so much pain in these other joints but nothing

shows up in a xray. My onset was just in April and my

disease has been mostly systemic until June and this

month, July, when I've started to notice MUCH MORE

JOINT PAIN. There is so much I don't understand about

this disease. I've research and researched and what

I've found is that every case is different...and mine

is no exception. It can be so frustrating because I

want to know what to expect in the and that's not

anything anyone can tell me. I mostly want to know

what to expect in the future so that I can prevent

it....this disease doesn't seem to work that way or

maybe I don't understand enough and need to get more

help from my Rheumy. I'm looking forward to my visit

with Dr. Cush in Sept. I think I'm going to tape it,

if it's ok with him...for the $300 I'm paying to see

him I woul think I should be allowed to He's out

of my insurance " network " so the expense is mine. I'm

rambling now....

Take good care. I love and think about you all!

Kim

- Ann Matera wrote:

> ,

>

> I too have been experiencing a lot of pain in my

> left flank lately, out of

> the clear blue, but could because of a " flare " that

> I am in right now. Keep

> an eye on it, and find the right doctor. Don't fool

> around with that ,

> and hopefully it's not the start of a kidney

> infection or something. Keep me

> posted, because at the same time, I am experiencing

> the same thing. I hope

> by the time you get this, you are feeling a little

> better.

> Love Sue #2

>

>

__________________________________________________

[Guest guest]

Kim-

For what it's worth...When I first started with the symptoms of Stills and

before we knew it was Stills, I used to get monthly fevers, like clock work,

during my cycle when I was ovulating. I went to many physicians who could

not figure it out. The fevers lasted a few days and then disappeared until

the following month. This was just after having my son and the doctors

explained it as " something hormonal! " The fevers were the only Stills

symptoms I had at that time.

Take Care-

Shelby

rsnz@...

[Guest guest]

Dear Kim,

I also experience the exact thing. Believe it or not it took me a long time

to figure out. About a week before my cycle until the end of my cycle my

symptoms definitely worsen.

This is off topic but I find it so strange. For 3 months now a few days

after my cycle I get a Migraine headache. I just started getting the

Migraines. Our hormones definitely seem to affect us in so many ways.

My Doc gave me a med called Hydrochlorot. I haven't used it long enough to

know if it works. My Doc said to take it a few days before my cycle. For

some reason I keep forgetting to take it!

Now for the second question. I think it depends on a few things such as

your disease not being controlled, the intensity of your disease activity

and how long you have had the pain in that particular joint.

I should throw in swelling. I didn't because after having this disease for

so long I only get mild swelling unlike the really bad swelling I use to

get. Even though I have only mild swelling I have developed permanent joint

damage. My pain is just as bad swelling or no swelling.

If you experience persistent pain in the same joint long enough I believe

over time there is definitely the potential for permanent joint damage.

I have permanent joint damage in most of the joints in my feet and in my

hands. I have experienced joint pain in most of my joints. However no

matter what, when my disease is active my feet have always been a problem.

The hands too just not quite as bad.

All of my other joints have been effected but the pain or swelling

eventually moves around to different joints. But like I said the disease

has always hit my feet and usually the hands as well.

I know how you feel about wanting to know what is going to happen. It is

like with these Migraine headaches. I have tried to learn as much as I can

about them. The one thing that I really wanted to know I can't find an

answer to. I wanted to find out about the frequencies of the Migraines.

All I get is everyone is different.

It is nice to hear from you. I hope that your feeling well. It must be

nice to be able to meet Dr. Cush. That came out wrong of course I wish that

you didn't have to see a Dr. but since you are, it must be nice to be able

to see a good one. I agree with you $300 Ouch!

I wish you the best,

jatw@...

[Guest guest]

Sorry I had to leave Friday and didn't get back until late last night. Now

I'm back.

Please disregard the message that my mail program just sent. I thought it

had sent it Friday, but obviously it hadn't, so it got sent now when i

logged on again. But please check your AI PM box in a while Tom, I'll be

sending you an overdue reply there soon.

Inger