Re: Raynaud's Disease & PF

[Guest guest]

I have had Raynauds for 8yrs but the only

symptoms I had were that if I got cold my fingers

would turn blue. My Dr. gave me nephedipine(not sure

of spelling)but I took it for awhile and it didn't

seem to help. I think I have had IPF for several years

as my friends remind me now about how sick I have been

in the past . I was just so sick and tired

and not getting better that I had the VATS done. I

thought I had blastomycosis because my daughters dog

had died from it and humans can get it.It was quite a

shock to learn I had IPF but in Feb. it will be a

year.I do not need oxygen yet, but I have my good and

bad days. I take my pred and nac and hope for the

best.I have noticed that in the last few months my

feet have also started to turn blue so I wear fluffy

socks and gloves to keep them warm as it is cold here

now.I know that other people have some terrible sores

and other problems from it but so far other than

freaking out my family at the color of my fingers it

hasn't outwardly affected anything . I do believe

though it is directly related to the IPF even though

I have no proof.By the way, I crashed your party and

had quite a hangover.

IPF 2/07 Il

--- wrote:

>

> I'm getting seriously CURIOUS about the numbers on

> this list who have

> Reynauds'..It is clearly a part of some diagnosed

> Autoimmune conditions

> like Scleroderma etc but it also seems to be popping

> up for those of us

> with Idiopathic PF!

>

> I'd find it interesting if all people with Reynauds

> add it into their

> profile on the Database & include Dx date.

>

> Reynauds came on very suddenly for me AFTER my

> symptoms of IPF were

> being investigated. I think I've had IPF symptoms

> for many years.

>

> Correct me if I'm wrong but my impression of

> Reynauds' is that it ISN'T

> a common problem in the general population!

>

> in Oz

>

> IPF: Fibrotic NSIP/UIP???

>

> Reynauds'

>

> May 2007

>

>

>

>

________________________________________________________________________________\

____

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[Guest guest]

Hi ....I was diagnosed with Raynaud's Disese in 09/07, but I had symptoms for a year and they couldn't find what was wrong until my circulation stopped in my fingers (it felt like strangulation). Soon after diagnosis of PF symptoms seemed to be getting worse.

Irene PF 03/07 Canada

---- Original Message ----

To: Breathe-Support

Sent: Wed, 12 Dec 2007 6:45 pm

Subject: Raynaud's Disease & PF

I'm getting seriously CURIOUS about the numbers on this list who have Reynauds'..It is clearly a part of some diagnosed Autoimmune conditions like Scleroderma etc but it also seems to be popping up for those of us with Idiopathic PF!

I'd find it interesting if all people with Reynauds add it into their profile on the Database & include Dx date.

Reynauds came on very suddenly for me AFTER my symptoms of IPF were being investigated. I think I've had IPF symptoms for many years.

Correct me if I'm wrong but my impression of Reynauds' is that it ISN'T a common problem in the general population!

in Oz

IPF: Fibrotic NSIP/UIP???

Reynauds'

May 2007

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[Guest guest]

do you wear mittens instead if gloves? nsip raynauds 2002 canto Ohkiki boettin wrote: I have had Raynauds for 8yrs but the onlysymptoms I had were that if I got cold my fingerswould turn blue. My Dr. gave me nephedipine(not sureof spelling)but I took it for awhile and it didn'tseem to help. I think I have had IPF for several yearsas my friends remind me now about how sick I have beenin the past . I was just so sick and tired and not getting better that I had the VATS done.

Ithought I had blastomycosis because my daughters dog had died from it and humans can get it.It was quite ashock to learn I had IPF but in Feb. it will be ayear.I do not need oxygen yet, but I have my good andbad days. I take my pred and nac and hope for thebest.I have noticed that in the last few months myfeet have also started to turn blue so I wear fluffysocks and gloves to keep them warm as it is cold herenow.I know that other people have some terrible soresand other problems from it but so far other thanfreaking out my family at the color of my fingers ithasn't outwardly affected anything . I do believethough it is directly related to the IPF even thoughI have no proof.By the way, I crashed your party andhad quite a hangover. IPF 2/07 Il--- <gina.francisbigpond> wrote:> > I'm getting seriously CURIOUS

about the numbers on> this list who have> Reynauds'..It is clearly a part of some diagnosed> Autoimmune conditions> like Scleroderma etc but it also seems to be popping> up for those of us> with Idiopathic PF!> > I'd find it interesting if all people with Reynauds> add it into their> profile on the Database & include Dx date.> > Reynauds came on very suddenly for me AFTER my> symptoms of IPF were> being investigated. I think I've had IPF symptoms> for many years.> > Correct me if I'm wrong but my impression of> Reynauds' is that it ISN'T> a common problem in the general population!> > in Oz> > IPF: Fibrotic NSIP/UIP???> > Reynauds'> > May 2007> > > > __________________________________________________________Be

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[Guest guest]

I wear gloves. I buy the ones from the dollar

store and I have them in every room if I get cold.

IPF 2/07 IL

--- Cain wrote:

> do you wear mittens instead if gloves?

> nsip raynauds 2002 canto Oh

>

> kiki boettin wrote:

> I have had Raynauds for 8yrs but the only

> symptoms I had were that if I got cold my fingers

> would turn blue. My Dr. gave me nephedipine(not sure

> of spelling)but I took it for awhile and it didn't

> seem to help. I think I have had IPF for several

> years

> as my friends remind me now about how sick I have

> been

> in the past . I was just so sick and tired

> and not getting better that I had the VATS done. I

> thought I had blastomycosis because my daughters dog

>

> had died from it and humans can get it.It was quite

> a

> shock to learn I had IPF but in Feb. it will be a

> year.I do not need oxygen yet, but I have my good

> and

> bad days. I take my pred and nac and hope for the

> best.I have noticed that in the last few months my

> feet have also started to turn blue so I wear fluffy

> socks and gloves to keep them warm as it is cold

> here

> now.I know that other people have some terrible

> sores

> and other problems from it but so far other than

> freaking out my family at the color of my fingers it

> hasn't outwardly affected anything . I do believe

> though it is directly related to the IPF even though

> I have no proof.By the way, I crashed your party and

> had quite a hangover.

> IPF 2/07 Il

>

> --- wrote:

>

> >

> > I'm getting seriously CURIOUS about the numbers on

> > this list who have

> > Reynauds'..It is clearly a part of some diagnosed

> > Autoimmune conditions

> > like Scleroderma etc but it also seems to be

> popping

> > up for those of us

> > with Idiopathic PF!

> >

> > I'd find it interesting if all people with

> Reynauds

> > add it into their

> > profile on the Database & include Dx date.

> >

> > Reynauds came on very suddenly for me AFTER my

> > symptoms of IPF were

> > being investigated. I think I've had IPF symptoms

> > for many years.

> >

> > Correct me if I'm wrong but my impression of

> > Reynauds' is that it ISN'T

> > a common problem in the general population!

> >

> > in Oz

> >

> > IPF: Fibrotic NSIP/UIP???

> >

> > Reynauds'

> >

> > May 2007

> >

> >

> >

> >

>

>

__________________________________________________________

> Be a better friend, newshound, and

> know-it-all with Yahoo! Mobile. Try it now.

>

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

>

>

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with

> Yahoo! Mobile. Try it now.

________________________________________________________________________________\

____

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know-it-all with Yahoo! Mobile. Try it now.

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[Guest guest]

, I'm in the rather odd situation in Oz that my HOUSE becomes an ice-box in winter BUT I can take my mittens off when I go outside iafter about 11am 'cos it's all sunny & warm at 22 - 24C. Overnight, we plummet to Zero or just below & my weatherboard house just stays that way. It's the variation in temperature through winter that gets us.

Turning on the air-con is the obvious solution but I'm so used to just rugging up that i have to really go against the 'save-the-environment grain' to do that! (mind you I confess I'm quite willing to turn it on over summer for those really hot, Hot, HOT days!)

Cheers,

in Oz> > > >> > > > >> > > > > I'm getting seriously CURIOUS about the> > numbers on> > > > > this list who have> > > > > Reynauds'..It is clearly a part of some> > diagnosed> > > > > Autoimmune conditions> > > > > like Scleroderma etc but it also seems to be> > > > popping> > > > > up for those of us> > > > > with Idiopathic PF!> > > > >> > > > > I'd find it interesting if all people with> > > > Reynauds> > > > > add it into their> > > > > profile on the Database & include Dx date.> > > > >> > > > > Reynauds came on very suddenly for me AFTER my> > > > > symptoms of IPF were> > > > > being investigated. I think I've had IPF> > symptoms> > > > > for many years.> > > > >> > > > > Correct me if I'm wrong but my impression of> > > > > Reynauds' is that it ISN'T> > > > > a common problem in the general population!> > > > >> > > > > in Oz> > > > >> > > > > IPF: Fibrotic NSIP/UIP???> > > > >> > > > > Reynauds'> > > > >> > > > > May 2007> > > > >> > > > >> > > > >> > > > >> > > >> > > >> > >> >> __________________________________________________________> > > > Be a better friend, newshound, and> > > > know-it-all with Yahoo! Mobile. Try it now.> > > >> > >> >> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > ---------------------------------> > > > Be a better friend, newshound, and know-it-all> > with> > > > Yahoo! Mobile. Try it now.> > >> > >> > >> > >> >> ________________________________________________________________________\> > ____________> > > Be a better friend, newshound, and> > > know-it-all with Yahoo! Mobile. Try it now.> >> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > >> > > > > > > > > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ>

[Guest guest]

I'd agree with that in fact one's HEAD is the most important bit of all..on our highest mountain in Oz the Rangers are there even in summertime to check that walkers have appropriate headgear on...they don't care if folk are in summer shorts but they MUST have a good beanie in case the weather turns foul. A warm head saves lives!!!! No beanie, no walk around one particular track!

Soooooo I look like the proverbial IGLOO woman in my winter house!!!!!!!

Cheers,

in Upside down Land> > > >> > > > >> > > > > I'm getting seriously CURIOUS about the> > numbers on> > > > > this list who have> > > > > Reynauds'..It is clearly a part of some> > diagnosed> > > > > Autoimmune conditions> > > > > like Scleroderma etc but it also seems to be> > > > popping> > > > > up for those of us> > > > > with Idiopathic PF!> > > > >> > > > > I'd find it interesting if all people with> > > > Reynauds> > > > > add it into their> > > > > profile on the Database & include Dx date.> > > > >> > > > > Reynauds came on very suddenly for me AFTER my> > > > > symptoms of IPF were> > > > > being investigated. I think I've had IPF> > symptoms> > > > > for many years.> > > > >> > > > > Correct me if I'm wrong but my impression of> > > > > Reynauds' is that it ISN'T> > > > > a common problem in the general population!> > > > >> > > > > in Oz> > > > >> > > > > IPF: Fibrotic NSIP/UIP???> > > > >> > > > > Reynauds'> > > > >> > > > > May 2007> > > > >> > > > >> > > > >> > > > >> > > >> > > >> > >> >> __________________________________________________________> > > > Be a better friend, newshound, and> > > > know-it-all with Yahoo! Mobile. Try it now.> > > >> > >> >> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > ---------------------------------> > > > Be a better friend, newshound, and know-it-all> > with> > > > Yahoo! Mobile. Try it now.> > >> > >> > >> > >> >> __________________________________________________________\> > ____________> > > Be a better friend, newshound, and> > > know-it-all with Yahoo! Mobile. Try it now.> >> http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> > >> > > > > > > > __________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ > > > > > > > ---------------------------------> Looking for last minute shopping deals? Find them fast with Yahoo! Search.>

[Guest guest]

Sher,

Until THe Reynaud's cropped up I LOVED my ice-box house in winter ...I love wearing Ugg Boots & being able to put on the woolly jumpers & warm trousers....open fire at night....feather doona on my bed instead of just a sheet...who needs warm air conditioning in Oz....

Mmmmmm now winter's will be a bit different!

in her sarong & thongs!

>> /....pardon me for jumping in here for a minute. , did you send me an email and it was returned? I think you had the address wrong. It's bofus@...> Did you receive the Genie Mattress yet?> ...how do you tolerate an ice-box in the winter? Do you mean every day?> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>

[Guest guest]

Funny you should say that Sher it is often described as 'THE LUCKY COUNTRY'...

As a kid I remember riding my bicycle home from school & womdering how on earth i got to be born HERE ( & how SAFE it felt to be in THIS country rather than anywhere else)...I think that was the root of my interest in tracing my genetic heritage back to wherever it came from. (Where would I come from if all my ancestors had stayed put in their OWN communities)

ANZACS (Australians & New Zealanders) were so removed from the horrors that seem to be going on in the rest of the world...the Cold War was a BLIGHT on my childhood but at least it was UP THERE! If there was a Nuclear bomb then we'd be the last to get it was the innocent thought of my childish mind!

We have a tradition of sending our men off to get involved in everyone else's affairs but mostly the trouble is BEYOND our shores!

'Scilly' in Oz

>> ...sounds like a fairy land to me. All the things you describe are so foreign to me. I think you aussies are lucky.> Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!>