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KayTee

Shortness of Breath

7 posts in this topic

Hi everyone,

 

It's been a while since I've posted (sorry - grandkiddies keeping me busy).

 

For the past year I've experienced some shortness of breath episodes that are getting more severe and I'd like to know if these sound like anything other people have experienced.

 

My back will start to ache, often there is a nauseous dizzy feeling, and then a distinct feeling that I cannot get enough air. The last episode (sounds so Victorian!) hit suddenly and I suddenly found myself crouching on the floor gasping for breath totally unable to get up for about 15 minutes.

 

My LFT shows 67% DCLO - at least it did last year - and no PAH right now.

 

I've described this to several doctors and they don't seem to know what it is. I'll be seeing my specialist in a few weeks and will let her know.

 

Thanks for any sharing or information.

 

Warm hugs.


Kay Tee

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Hi Kay Tee,

 

Well, normally what we'd tell people with these symptoms is to consult their doctor about it. Since you have already done that, I am really hoping that they have ruled out any serious disease as being the culprit (pulmonary fibrosis, pulmonary hypertension, heart problems, asthmas, etc.) so they are shrugging off the real question, which is: so exactly what is causing this?

 

All I can say -- and bear in mind that I have no medical training at all -- is that it sounds similar to hyperventilation to me. I hyperventilated once after a steroid shot in my neck. And my goodness, what an awful feeling that was. I literally could not catch my breath and it felt in every way that I had too little breath (none at all, actually), and not too much.

 

There is such a thing as hyperventilation syndrome, which is when it happens more frequently. "When a person over breathes, the lungs become overinflated. Without thinking about it, the person might use the chest muscles to expand the rib cage. This extra muscle work will feel like shortness of breath, and the person will have difficulty taking a deep breath."

 

You can read about it there, and see if the shoe fits. If you think it does, here is the oddest thing: you must go to the doctor right away and see if they agree with that diagnosis, or whether you need further testing to be positive that it isn't anything else.

 

The reason for that is, minus a diagnosis of the condition, you *cannot* assume that this is something harmless and you *must* go to an emergency room when it occurs because it could be a life-threatening emergency.

 

If your doctor diagnoses hyperventilation syndrome, then they can give you a instructions for how to practice relaxed breathing and you would begin the exercises as soon as an attack begins. You would *not* breathe into a paper bag, which was the old and now debunked treatment for it.

 

I'm sure others will have more or different ideas. But you are very right in thinking that you must have an answer for this, otherwise, how are you ever going to deal with it?

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hello Kaytee

 

Nice to see you, to see you nice! Of course I have no idea but marvel at Shelley's depth of knowledge that leads to such informed replies.

 

Recently I had a moment of not feeling like I had enough breath and it ain't a nice feeling and it actually frightening. I hope you get an answer as to the cause soon.

 

Take care and stick around for awhile!


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi KayTee,

 

Sorry to hear that you've been having problems with shortness of breath episodes.

 

One of the most noticeable symptoms I experienced was a shortage of breath on exertion; I also developed a dry cough...classic symptoms of interstitial lung disease. However, my symptoms were nothing like the feelings you've been having and as Shelley has said, I hope that your doctor has ruled out pulmonary fibrosis (which mine subsequently turned out to be.)

 

I'm pleased to hear that you're seeing your specialist quite soon and hopefully she may be able to get to the bottom of it for you.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Thank you everyone. I've never heard of hyperventilation so I'll check into it. So far the interstitial stuff has been ruled out and numerous tests have looked at my heart and lungs. But what was last year isn't this year right?


Kay Tee

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Hi everyone:

Just an update:

Although I'm going with the lung function tests etc. two of my doctors think it could have been a heart attack when I described it. So more tests.

I thought I was pretty educated about things but I did not realize pain was not always a symptom.

Perhaps we all try to diagnose ourselves a little too much since we think we know our disease pretty well?

Feeling a little stupid here.

Hugs.


Kay Tee

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Oh dear, KayTee, I am sorry to hear that you could have had a possible heart attack. It is easy to group every health problem together under the blanket of Scleroderma; I've done it myself as I've found it's almost more convenient to blame Scleroderma for everything ( I don't think I like the idea of having any separate issues as well! :unsure: )

 

I do hope that the results of the tests you have will help your doctors to see the whole picture more clearly.

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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