Bunky

For those with shortness of breath, is it constant?

16 posts in this topic

Hi, as I sit here and try to catch my breath, I would like to ask all that read this that have lung issues if your s.o.b. symptoms are always there, or do they come and go? I don't always have symptoms, sometimes I feel as if I'm perfectly fine, other times I feel fine until I walk up stairs, and still other times it'll start as fatigue and then tightness in the chest, and I know I'm in for a long haul of breathing issues that sometimes lasts a couple of weeks or even months. My pulmonary Dr. says my s.o.b. is probably not related to sclero because it comes and goes, but he says it's not asthma. Does this sound right? I sure would love for it not to be related, but I also don't want to ignore something that could be sclero related. Any input would be appreciated!

 

Thanks!

 

Bunky

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Hi--

 

I started having SOB in August---and for a long time thought I was just out of shape---then I started HOPING it was Asthma. Then I saw a pulmonolgist who did a bunch of tests including a (forgot the name)---something that takes out tissues from your lungs with a tube---which indicated that I had signficant inflamation in my lungs, which they worried would turn into fibrosis....and recommended Cytoxan treatments.

 

After exploring the cytoxan stories and looking for alternative, I decided to go ahead and do it---only to come down with a flu like thing that lasted 3weeks and seemed to have made my breathing worse.

 

It was then recommended that I start using Oxygen. I now carry around a little oxygen back-pack for when I'm walking outside or exerting energy. Scarily, they also found that my sleep oxygen levels were "dangerously" low too and they've recommended that I sleep with Oxygen (which I'm finding hard to do because the machine is so loud)

 

After going through huge denial---I think the oxygen actually helps.

 

So, based on my experience, I'd say have it checked out by a respiratory doctor.

 

hoping for good outcomes,

Debbie

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I have SOB too. Mine is from the scleroderma in my lungs. I have some scarring on them and also my chest wall has tighten up too. Sometimes, they can't hear anything out of the bottom of my right lung. I use a inhaler and it has helped me.

sadie

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Hi Bunky,

 

I have ocasional bouts of SOB. Feels like I just can't catch a good breath no matter how deeply I breathe. I also get the yawns. I do get the tightness in my chest too which coincides with the SOB.

 

It's a feeling hard to describe, not like being out of breath from exercise - with that I recover after a short time (longer now since sclero). The SOB is an annoying feeling that can last for me up to 1/2 day. I noticed mine would increase with stress and anxiety.

 

I have not had SOB for a long time - knock on wood - as soon as I say things like that I am sorry. ;)

 

One time my SOB was making me nuts so I got on the treadmill thinking that a bit of hard breathing would correct it - and it worked! Of course for me, it only took 5 minutes on the thing to get to huffing and puffing mode. By the time my breathing returned to normal my SOB was gone.

 

Take Care,

Barefut


Take care,

Barefut

 

Serena Justis

ISN Blogger

International Scleroderma Network (ISN)

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Bunky,

You need a new doctor.

 

My first doctor said asthma... he was an internal medicine guy and my instincts didn't believe him (I'd be hurtin' and maybe dead if I listened to him), so I self referred to an asthma doctor who said asthma is a problem of getting air out. My problem is getting air in, so the asthma doctor referred me to a fantastic pulmonary doctor who gave me my real diagnosis: Interstitial Lung Disease (ILD) caused by Scleroderma.

 

According to my doctors my lungs sound like rice crispies. I was told there's no real way to treat the fibrosis other than to treat the underlying cause: scleroderma, with immunosuppressant therapies such as cytoxan, cellcept, etc. Yes scleroderma can cause problems in the lungs, ILD being the typical condition.

 

ILD is a build of up inflammation and fibrosis in the lungs and they don't know what percentage of which I have, CT Scan shows it all the same, and fibrosis is permanent damage. By filling the lungs with inflammation and fibrosis there's less room for air and may lead to other conditions. I have mild pulmonary hypertension (PH) because of it. I've also had an awful cough since 2003, which is suppressed with several inhalers and prescription cough syrup.

 

Sigh. It just saddens and aggravates me cause doctors are supposed to help not mislead. Find a good pulmonary doctor who really knows about Scleroderma.

 

Please address this soon. I feel getting your lungs stable is very important. Although most people don't have the "aggressive" kind like I do, mine went down hill fast with ILD. I don't want to scare you but I think I'd consider this rather important.

 

take care,

peanut


You can deprive the body but the soul needs chocolate

my HMO makes me wear a helmet...

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Bunky,

I agree with Peanut, you need a new dr! I too have ILD and have for a few years now. My sob is not constant although there will be times when it will last weeks and then will disappear. It has been around now for a few days and I am hoping it goes away soon because it is driving me nuts!!! You can read more on pulmonary fibrosis at the www.sclero.org website. You might want to copy it and give it to your dr!

 

Hugs,

Lisa


Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Thanks Peanut, Barefut, Lisa and everyone so much for the input. I agree I need a new doctor.

I'm so uncomfortable today that work sent me home saying I looked awful. I then called the pharmacy for a new inhaler, and I'm out of refills. (Fortunately, I have a home nebulizer so I'm not entirely without meds) My primary care physician is out of town until March 31 so I can't get a new prescription, I don't want to go back to the pulmonary dr. I saw last year, so I feel out of options until my dr. comes back and I can't get referred to the sclero specialists at UCSF until I see my dr. again.

Oh well. It's really not that bad. I got to spend the afternoon with my husband ( he had an unexpected day off) instead of working until 6 or 7 or 8.

 

I am so grateful for this forum.

 

Thank you to all the volunteers! You are greatly appreciated!

 

Bunky

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Hi, Bunky. You should be able to get a prescription for a routine medication even though your primary care physician is out of town. Find out who is seeing your doctor's patients and call them today.


Warm wishes,

Jefa

 

Carrie Maddoux

(Retired)ISN Sclero Forums Support Specialist

(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

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Here's a question: is PH treated by a cardiologist or a pulmonary dr? I know the diagnosis is an ECHO which would make you think cardio, but it's the lungs really so, which is it? If you're having trouble breathing it would seem logical to go to a pulmonologist. Finding anybody who is familiar with sclero is tough enough, and we see enough specialists on top of it. Just wondering... Mary


Diffuse sclero; diabetes; hypertension; GERD with Barrett's

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I also agree with Peanut - you definitely need a new doctor.

 

I never got a decent diagnosis until I went to a major center that deals with pulmonary hypertension and related issues. You need a full work-up of lung function, probably an echocardiogram and possibly right heart catheterization.

 

This is a subject that is notoriously misdiagnosed - even by pulmonolgists. It's also something that can be dealt with more effectively when diagnosed early.

 

Craig

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Bunky, I am with you on the feelings of not being able to get enough air. Mine comes and goes. I can bend over to put on a pair of shoes and be huffing and puffing and trying to suck in air. I also get where I yawn and can't stop yawning. Not enough oxygen in my system. I get hypertensive and get a type of asthma attack when I try to hurry. Then I have to do the inhale through the nose as if smelling something and exhale quickly as if blowing out candles. This is what was suggested for me to do to strengthen my lung capacity. My doctor gave me a prescription for rescue inhalers used for asmatics. I really don't think I have asthma because of something that happened once or twice. The shortness of breath like I did a ton of exerting things is what I worry most about. If I did have asthma wouldn't I be using something other than a rescue inhaler. Humm! Do we or don't we have asthma? Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Sheryl,

 

That sounds so familiar! Sometimes I can exercise with no problems, but then just walk up the stairs to tuck in my kids, and I feel like I can't catch my breath, or just the actions of climbing into bed at night make me short of breath. Weird!

 

Hang in there!

Bunky

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I have not yet gotten the results of my 6 month lung test. What I have noticed and especially today, is when I was at our worship service I wasn't able to sing along with the others. I couldn't believe it! If I tried to sing more than a couple of words I was out of breath. This has never happened to me and I have been telling my husband that I know my lungs are worse as I get so short of breath. I can't wait until I actually get the results of the tests. I wish I could read the things myself and then I could quit worrying.

 

Warm hugs.

 

Peggy

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Hi Peggy,

I'm sorry you had trouble worshipping. That can be so discouraging.

I've been having trouble singing, too, and I'm in the choir! I just can't seem to keep enough air in my lungs to sustain a note, and if I take an inhaler it just makes me cough. Oh well! I guess it's time for me to listen, which isn't always a bad thing!

 

Take Care,

Bunky

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Hi,

I'm in a similar situation. I quit singing in the choir because of dry mouth, now it seems like singing can be so draining at times.

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