Re: breathing and weakness

January 26, 2009

rudy joyce

you are not making anything up

the nature of this disease is that when we are resting, sitting, etc, we feel fine, as soon as we exert ourselves, the O2 level goes down and we get SOB or tired or whatever, we need to stop and rest.--at least that is true for me and many others on this site

COPD is a different disease -- it is obstructive, ours is restrictive

while at pulmonary rehab, when they explained how COPD works, i sort of ignored it, i was more interested in learning about pulmonary fibrosis

i think they can use the same liters per minute for longer periods of time, and i think their O2 SAT, doesn't change with exertion

I could be wrong, but someone else on the board with give you more accurate info

or you could look it up on line if you are really curious

Pink Joyce IPF 3/06 Pennsylvania

Donate Life

Subject: breathing and weaknessTo: "Breathe-Support" <Breathe-Support >Date: Saturday, January 24, 2009, 12:58 PM

Hi all, I feel so lucky and feel kind of stupid asking these things. There are so many here that are so sick and so far I just feel better having oxygen.

I am having such a hard time keeping my nose open to breathe. I am using an AYR nasel spay and it just doesn't do it. I just finished using some Nasonex and that has been helpful but the saline solution doesn't help at all. Any other ideas?

Also, I have noticed something strange. I think I have plenty of oxygen but I seem to be getting weaker. I don't understand it since I exercise vigorously 4 days a week for an hour each day. My portable seems almost too heavy to hold where last month it didn't and I am having a difficult time doing things. Is this part of IPF? I don't know if I should tell my doctor or if it is all in my mind and I want to shirk doing things. I am completely baffeled. I should be getting stronger but I have been getting weaker. Confused.

I have been busy and active and my spirits are high and I'm doing things like baking bread and having fun with my friends and my animals. Also do any of you know about COPD? I have a friend who has severe COPD but her doctor says oxygen won't help her it may make her more comfortable but it won't help her yet she doesn't lose her breath like I do going from the living room to the kitchen and I have a small house! I think my IPF is mild at the moment and don't understand why my symptoms seem to be worse then hers and she is severe. Am I just making this up in my mind that I get breathless if I don't have oxygen with such minimal exertion? I feel like I am a fraud and should just throw my oxygen out and get on with life. Also when doing tasks I seem to have to rest in between. I just can't zip thru my kitchen cleaning it. I take the dishes out of the dishwasher and then I need to rest. Then I rinse some dishes off and need to rest. Am I making this

up?

Blue Flyer Joyce 63 AZ IPF 11-08

January 26, 2009

Pink

Actually you're quite right in your statements on COPD. They may have

some difference at exertion but typically nothing like we have. Now,

these are just generalizations about both diseases. But, the COPD

patient normally stays on low flows for a long period of time. They have

to be careful not to use too much oxygen as well. I had an uncle was on

2 lpm for most of his 30 years of COPD, 24/7 exertion or not.

The differences are always something to be aware of and for any of those

here who have COPD in addition to PF they need to be very careful not to

listen to some of the things we say. Many times too you'll encounter

respiratory rehab people or oxygen suppliers or even nurses in doctors

office who are so use to COPD they will give a PF patient wrong

information. There are many misdiagnoses made on COPD vs. PF although

with a proper high resolution CT the diagnosis is typically fairly

straighforward not as to the specific fibrosis but as to whether there

is fibrosis.

>

> From: JOYCE RUDY greycharlie@...

> Subject: breathing and weakness

> To: " Breathe-Support " Breathe-Support

> Date: Saturday, January 24, 2009, 12:58 PM

>

> Hi all, I feel so lucky and feel kind of stupid asking these things.

There are so many here that are so sick and so far I just feel better

having oxygen.

>

> I am having such a hard time keeping my nose open to breathe. I am

using an AYR nasel spay and it just doesn't do it. I just finished using

some Nasonex and that has been helpful but the saline solution doesn't

help at all. Any other ideas?

>

> Also, I have noticed something strange. I think I have plenty of

oxygen but I seem to be getting weaker. I don't understand it since I

exercise vigorously 4 days a week for an hour each day. My portable

seems almost too heavy to hold where last month it didn't and I am

having a difficult time doing things. Is this part of IPF? I don't know

if I should tell my doctor or if it is all in my mind and I want to

shirk doing things. I am completely baffeled. I should be getting

stronger but I have been getting weaker. Confused.

>

> I have been busy and active and my spirits are high and I'm doing

things like baking bread and having fun with my friends and my animals.

Also do any of you know about COPD? I have a friend who has severe COPD

but her doctor says oxygen won't help her it may make her more

comfortable but it won't help her yet she doesn't lose her breath like I

do going from the living room to the kitchen and I have a small house! I

think my IPF is mild at the moment and don't understand why my symptoms

seem to be worse then hers and she is severe. Am I just making this up

in my mind that I get breathless if I don't have oxygen with such

minimal exertion? I feel like I am a fraud and should just throw my

oxygen out and get on with life. Also when doing tasks I seem to have to

rest in between. I just can't zip thru my kitchen cleaning it. I take

the dishes out of the dishwasher and then I need to rest. Then I rinse

some dishes off and need to rest. Am I making this up?

>

> Blue Flyer Joyce 63 AZ IPF 11-08

>

January 26, 2009

MB/Joyce

Actually, oxygen is quite addicting. We were all addicted to it nine

months before we were born and have been ever since....lol

Now I wasn't just being funny in saying that because when you think of

it like that it makes more sense. You have always needed oxygen just as

you do now. The difference is that now you need supplemental oxygen to

get the right amount into your system. So, all you are doing is

switching the means of supplying it. All just to get your saturation to

where it was and should be.

There is nothing addicting about supplemental oxygen. If you were on it

for a recovery from a surgery or something, you might be on it

temporarily. Those of us here who are on it for PF so will always need

it and over time need more.

I hear people refer to addictions for a lot of medications that we might

be on for life. Am I addicted to a thyroid medication because I will

always need it to supplement the underproduction by my body? Am I

addicted to Nexium because I'll always need it for GERD? Am I addicted

to my sleep med because I'll always need it or another for sleep? Am I

addicted to Neurontin because I will always need it for restless limbs

and peripheral neuropathy? Am I addicted to eyeglasses because I'll

always need them to see?

Many here fear becoming addicted to an anti-anxiety med or to a pain

killer. Addiction is abuse. But if I had a pain that was helped by a

pain med and I'd need the rest of my life, I would gladly take the pain

med rather than suffer the pain.

Oh, by the way, in addition to oxygen, I'm also addicted to food and

water.....

Oxygen is your friend. Use it as directed and when needed.

>

> From: JOYCE RUDY

> Subject: breathing and weakness

> To: " Breathe-Support "