Re: Re: I have a question for everyone

March 28, 2005

Oh thank you very much Lorie. This stills thing is driving me crazy. I feel

terrible in the summer, I get real tired out and just don't feel like doing

anything at all, and in the winter I love the cold weather, it doesn't really

affect my bones unless it's about 30 degrees out. In the fall or spring I get a

flair. Go figure! I think I should stop trying to figure this thing out and just

find a new Rheumy.

Hugs; Ginger

Lorie wrote:

Ginger, In the beginning I thought mine was triggered by the weather,

and low and behold it is. In the summer, the extreme heat brings out

the lupus symptoms and inflamation, in the fall, the damp weather

causes inflamtion of all the joints...cold winter weather, brings out

the extreme fatigue,which I think is because my body is trying to stay

warm. That's my experience with the weather changes.

Lorie in Seattle

-- In Stillsdisease , Ginger Sunshine <pct777@y...>

wrote:

> Does this disease tend to flair in a certin season? >

> Hugs' Ginger

>

March 28, 2005

Timisha, I know I don't know either if allergy plays a roll in this or not. I

was told that having allergies is what triggers a flair, yet I have allergies

all year round.

Thank you for the help. I know the heat does do me in. I not only get alot of

pain and swelling but I feel real bad too. I can't and don't want to get up and

do anything. The heat takes away my strength and makes me tired and in pain. I

have had my worst flair with high fevers and rash and headache and sore throat

during the summer. Now that's it's spring I have fever, stiffness and pain. And

to make things worst my doctor wont try anything. She says I can't take this and

that and that most of the drugs are for RA and not what I have. Well, what's the

difference between RA and Stills? I know having stills we get alot more things

wrong but gee something has to be out there to try.

I wont go on because with the pain I am having I just get more depressed.

Hugs; Ginger

Timisha wrote:

I have only had one flair back in oct. I think I have had alot of the

symptoms for many years. I often get sick and stuff this time of year

now that I look back. I don't know if it is allerigies, the heat or

what. My doctor told me that tanning beds and the sun would make my

disease worse to stay out of them. I don't know at the times I gotten

sick after getting out of the sun or tanning bed. I don't know if this

will help you or not. Just thought I'd send what I have noticed. Good

luck,

Timisha

---

In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> Does this disease tend to flair in a certin season? It seems like I

get it in the summer or spring. I was just wondering if the seasons had

anything to do with it? Thanks so much!

>

> Hugs' Ginger

>

March 28, 2005

I can't say for sure as I am relatively new to this (15 months) but I started

to go downhill incredibly fast once it got cold out.

Ever since I was hospitalized during Basic Training I have had severe chills

everytime I would go from being warm to cold quickly. Last summer I am lucky I

didn't drown in my pool as it was 90 outside and I got into 75 degree water and

locked up and started to shake like hell. I couldn't move and am grateful my

wife was nearby.

I have always hated the cold anyway as I am an outdoorsman. I used to hike,

like to camp and go fishing every single chance I get with the exception of ice

fishing.

I guess I will learn more about how the seasons affect me as this goes on,

but so far I am leaning towards the cold causing me all kinds of problems.

Kirk

In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> Does this disease tend to flair in a certin season? It seems like I

get it in the summer or spring. I was just wondering if the seasons had

anything to do with it? Thanks so much!

>

> Hugs' Ginger

>

March 28, 2005

Thank you Kirk. So that horrible shaking is part of this too! I hate it when I

do that because I can't move and like you said it's severe chills. I did notice

when it down below the 50's at night I always get those shakes and I shake for a

long time. It gets hard to breathe too when shaking like that. Of course after

or by the time it stops I have tons of blankets on me and can't move to take my

temp. Then when it's time to get up in the morning I can't! I feel so drained.

It takes about half the day to even feel better or good enough to do anything.

Hugs; Ginger

Kirk Bonanny wrote:

I can't say for sure as I am relatively new to this (15 months) but I started

to go downhill incredibly fast once it got cold out.

Ever since I was hospitalized during Basic Training I have had severe chills

everytime I would go from being warm to cold quickly. Last summer I am lucky I

didn't drown in my pool as it was 90 outside and I got into 75 degree water and

locked up and started to shake like hell. I couldn't move and am grateful my

wife was nearby.

I have always hated the cold anyway as I am an outdoorsman. I used to hike,

like to camp and go fishing every single chance I get with the exception of ice

fishing.

I guess I will learn more about how the seasons affect me as this goes on,

but so far I am leaning towards the cold causing me all kinds of problems.

Kirk

In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> Does this disease tend to flair in a certin season? It seems like I

get it in the summer or spring. I was just wondering if the seasons had

anything to do with it? Thanks so much!

>

> Hugs' Ginger

>

March 28, 2005

I have found my temperature goes through the roof whenever I get the

" uncontrollable shaking chills " . It has been as high as 106. Everytime I had a

temperature and had an MRI that would also trigger the chills and fever. Last

year they had my fever down to 101 & it was 105 after the MRI. It took about

8-10 hours before they got my body to settle down. I also get excruciating

headaches when this happens.

Needless to say, I hate the ******* chills!!!

Kirk

Re: Re: I have a question for everyone

Thank you Kirk. So that horrible shaking is part of this too! I hate it when I

do that because I can't move and like you said it's severe chills. I did notice

when it down below the 50's at night I always get those shakes and I shake for a

long time. It gets hard to breathe too when shaking like that. Of course after

or by the time it stops I have tons of blankets on me and can't move to take my

temp. Then when it's time to get up in the morning I can't! I feel so drained.

It takes about half the day to even feel better or good enough to do anything.

Hugs; Ginger

Kirk Bonanny wrote:

I can't say for sure as I am relatively new to this (15 months) but I

started to go downhill incredibly fast once it got cold out.

Ever since I was hospitalized during Basic Training I have had severe

chills everytime I would go from being warm to cold quickly. Last summer I am

lucky I didn't drown in my pool as it was 90 outside and I got into 75 degree

water and locked up and started to shake like hell. I couldn't move and am

grateful my wife was nearby.

I have always hated the cold anyway as I am an outdoorsman. I used to hike,

like to camp and go fishing every single chance I get with the exception of ice

fishing.

I guess I will learn more about how the seasons affect me as this goes on,

but so far I am leaning towards the cold causing me all kinds of problems.

Kirk

In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> Does this disease tend to flair in a certin season? It seems like I

get it in the summer or spring. I was just wondering if the seasons had

anything to do with it? Thanks so much!

>

> Hugs' Ginger

>

March 28, 2005

Timisha,

I am a red head w/ really fair skin. I always flare badly when I get

burned. I tried tanning creme one year and I looked very orange. I

always wanted a tan when I was a teen. I hated my freckles! I have

learned to like my skin more, after the joint pain and burn. Do you tan

w/out burning? Do you think sun exposure depletes something in our

bodies? Hope you are cozy and pain is very low for you!

love, Sharon

xxoo

>

> I have only had one flair back in oct. I think I have had alot of the

> symptoms for many years. I often get sick and stuff this time of year

> now that I look back. I don't know if it is allerigies, the heat or

> what. My doctor told me that tanning beds and the sun would make my

> disease worse to stay out of them. I don't know at the times I gotten

> sick after getting out of the sun or tanning bed. I don't know if

> this

> will help you or not. Just thought I'd send what I have noticed.

> Good

> luck,

>

> Timisha

>

> ---

> In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> > Does this disease tend to flair in a certin season? It seems like I

> get it in the summer or spring. I was just wondering if the seasons

> had

> anything to do with it? Thanks so much!

> >

> > Hugs' Ginger

> >

March 28, 2005

Oh wow. I am sort of glad I can't move to take my temp. I have had my fevers as

high as 106 and went to the ER with it and they said after a blood test I have a

virus running through my blood and gave me penacillen shot and sent me home. The

funny thing is my fever went down to about 101 but after an hour it shot right

back up and the chills came long and hard before it went up. Oh how I pray I am

not doing that again, until I can get me a doctor who may be more helpful.

Hugs Ginger

Kirk Bonanny wrote:

I have found my temperature goes through the roof whenever I get the

" uncontrollable shaking chills " . It has been as high as 106. Everytime I had a

temperature and had an MRI that would also trigger the chills and fever. Last

year they had my fever down to 101 & it was 105 after the MRI. It took about

8-10 hours before they got my body to settle down. I also get excruciating

headaches when this happens.

Needless to say, I hate the ******* chills!!!

Kirk

Re: Re: I have a question for everyone

Thank you Kirk. So that horrible shaking is part of this too! I hate it when I

do that because I can't move and like you said it's severe chills. I did notice

when it down below the 50's at night I always get those shakes and I shake for a

long time. It gets hard to breathe too when shaking like that. Of course after

or by the time it stops I have tons of blankets on me and can't move to take my

temp. Then when it's time to get up in the morning I can't! I feel so drained.

It takes about half the day to even feel better or good enough to do anything.

Hugs; Ginger

Kirk Bonanny wrote:

I can't say for sure as I am relatively new to this (15 months) but I

started to go downhill incredibly fast once it got cold out.

Ever since I was hospitalized during Basic Training I have had severe

chills everytime I would go from being warm to cold quickly. Last summer I am

lucky I didn't drown in my pool as it was 90 outside and I got into 75 degree

water and locked up and started to shake like hell. I couldn't move and am

grateful my wife was nearby.

I have always hated the cold anyway as I am an outdoorsman. I used to hike,

like to camp and go fishing every single chance I get with the exception of ice

fishing.

I guess I will learn more about how the seasons affect me as this goes on,

but so far I am leaning towards the cold causing me all kinds of problems.

Kirk

In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> Does this disease tend to flair in a certin season? It seems like I

get it in the summer or spring. I was just wondering if the seasons had

anything to do with it? Thanks so much!

>

> Hugs' Ginger

>

March 28, 2005

This email strikes a chord with me in a funny kind of way. Ever since I

was 11 years old and first crossed the Susquehanna River (Mom & Dad would

have killed me if they knew at the time) I have been a die-hard fisherman. I

would get a mild sunburn the first day out every year, but would do nothing

but darken up the rest of the year. I prefer to wear no shirt when fishing,

especially when I am not in my boat as all a shirt does is give the current

more to pull on.

Last April right after I was diagnosed with Stills we had a 75 degree day

and a good friend and I went up to my parents' cottage to do some Bass

fishing. It was the first week that the ice had melted there and I knew

exactly where the Bass would be. To make a long story short, our 2 hour trip

turned into a 9 hour event as the fishing was non stop and incredible. I

took my shirt off for a few hours and the next day looked like a lobster.

The pain was even worse. I figured at least I got my sunburn out of the way

for the year.....but now all I do is burn. I can't go out in the sun without

the strongest sunscreen I can find, and I usually have to apply that a few

times per day.

Amazing how fast life can do a 180!!!

Kirk

Re: Re: I have a question for everyone

Timisha,

I am a red head w/ really fair skin. I always flare badly when I get

burned. I tried tanning creme one year and I looked very orange. I

always wanted a tan when I was a teen. I hated my freckles! I have

learned to like my skin more, after the joint pain and burn. Do you tan

w/out burning? Do you think sun exposure depletes something in our

bodies? Hope you are cozy and pain is very low for you!

love, Sharon

xxoo

>

> I have only had one flair back in oct. I think I have had alot of the

> symptoms for many years. I often get sick and stuff this time of year

> now that I look back. I don't know if it is allerigies, the heat or

> what. My doctor told me that tanning beds and the sun would make my

> disease worse to stay out of them. I don't know at the times I gotten

> sick after getting out of the sun or tanning bed. I don't know if

> this

> will help you or not. Just thought I'd send what I have noticed.

> Good

> luck,

>

> Timisha

>

> ---

> In Stillsdisease , Ginger Sunshine <pct777@y...> wrote:

> > Does this disease tend to flair in a certin season? It seems like I

> get it in the summer or spring. I was just wondering if the seasons

> had

> anything to do with it? Thanks so much!

> >

> > Hugs' Ginger

> >

March 29, 2005

Kirk I am the same way. I was even sent to see a dermathologist for this and she

said I have super sensative skin. I was amazed because I used to only tan and

not anymore. I too use sunscrean. But while taking Mtx. I was told to wear

sunscrean all the time. I wonder if this had anything to do with my whole turn

around? I even got carcennoma of the skin on an ear no less. It's been removed

now but then I never put sunscrean on my ear!!!