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Nina

Lung Problems

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Last night I woke up feeling like I couldn't get air. I do have a little stuffy nose, but this was different. Even if I breath in through my mouth, it still feels like I'm not getting enough air. I think this feeling comes and goes, because once I was up and about I didn't feel that bad. Now that I'm getting ready to go to bed, I'm feeling it again. Just wondering if it is my nerves/stress. I live with unavoidable stress, much more than most people. My circumstances put me in a position where I just can't avoid stress. I've been practicing meditation and that does help some. Funny thing is my rheumatologist just ordered some tests (PFTs with DLCO) ~ whatever that is... I know it has to do with lung capacity because she asked me if I had ever had this test before. Wondering if anyone else has experienced this problem and if this is possibly connected to sclero. I like to know what's coming next ~

Thanks and much love to all ~

Nina (DE)

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Nina,

 

I'm glad to see that your rheumatologist has ordered pft. It's a relatively easy test, noninvasive and provide quite a bit of information as to the condition of your lungs and where or not more tests are needed. If you want to learn a little about a PFT, please visit our section on pulmonary tests.

 

One of my earliest symptoms (before diagnosis) was the difficultly breathing when laying down. It came on gradually rather than suddenly. Breathing got harder and harder. I was finally diagnosed with polymyositis (PM) as well as sclero. The PM was causing a weak diaphragm and chest muscles; therefore, gravity was too much for them when I laid down so breathing was difficult. My pft was relatively normal at the time. This condition can be due to many things, so please discuss it with your doctor. Obviously something that needs to be addressed quickly.

 

Please keep us informed.


Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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Janey ~ Thanks so much for taking the time to post. I was almost ready to go to the emergency room last night. I had to get up and try to meditate at 4 a.m. and that's NOT like me. Anyway, I will be making another appointment witht my PC tomorrow and will discuss it then. Even though I don't have all the confidence in the world with my PC. I see my rheumatologist in 2 wks. but will go for the tests this week; depending on how early I can get out of work, I may do it tomorrow. I was told, no appointment necessary at the hospital. Not sure how true that is.

Well, I need to try to get some rest and hope that tonight is a little better than last night. Thanks again for the line also...

Much love,

Nina (DE)

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Hi Nina,

 

Your Rheumatologist sounds like he/she is right on top of things.

 

It is an uneasy feeling not being able to take a breath correctly. I developed difficulty breathing this past March. It was the first time I had ever experienced shortness of breath. Luckily I found out quickly that I could breath if I stayed calm. I called my Rheumatologists to let her know and she saw me right away and gave me a shot of Solumedrol. My arthritis had also flared. After the PFTS were done the pulmonologist said that my larynx was not openning when I took a deep breath. She increased my protonix for the esophageal reflux problem and ordered echocardiograms, regular and a stress echo. My Rheumatologist wasn't satisfied and had a cat scan done of my chest which showed pulmonary nodules and inflamation. We are all so different that anything may show up. Best to get things checked out.

 

Your Rheumatologist might want to know this especially if she has ordered pfts already.

 

Take care of yourself,

 

Judy


A happy heart is good medicine.

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Nina

 

I started noticing that I would get out of breath "sometimes". A couple of times it was after I had eaten or was doing something around the house. Once it was at the library and again at the grocery store. I talked to my Rheumatologist about it at my appointment a week ago. She said she thought it sounded like anxiety and increased the medication I take for it (buspirone). It has made a big difference. I'm still going to make an appointment with the Pulmonary doctor though.

 

Take care,

Christy


Love makes the world go around!

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Hi Nina,

 

I have experienced the exact thing you are talking about. The last time it was really bad was last October. I went to bed and couldn't breathe, I was up all night and it didn't stop. It went on for four days before I called my doctor. They promptly admitted me to make sure nothing was really wrong. I was diagnosed with ILD a few years back. It could be anxiety or a number of different things.

 

When you get your PFT done ask for a copy of the results for your records. Let us know how it goes!


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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I'm so sorry you are having to deal with this scary new problem. I know exactly how you feel. With me it would be bad when I would walk or come up the stairs. I had 2 different PFT's done and they were worse from the one I had done a year earlier. I'm glad you're going to have this test done as it will be a good indication of what's going on. I'm also glad that you are moving it up as there's no sense in your suffering and worrying on what's going on. There are so many things they can do to help if something is happening and you need to stay on top of it. Please let us know what you find out and good luck. I hope you are able to get some rest and that the mediation helps.

 

Warm hugs,

 

Peggy

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Nina,

 

I'm sorry you are having such a time with your breathing. I have not exerienced this problem with the sclero, but being an asthmatic I understand what it's like. I got a bad cold not too long ago and I was unable to breath through my nose and it felt like my lungs weren't working at capacity either. It's not a good feeling. Here's hoping that you feel better soon.


I may have Scleroderma, but Scleroderma doesn't have me!

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Judy, Christy, Lisa, Peggy, smac ~ Thank you all so much for your responses. I do think my rheumatologist is very good, after the tests come back I will let everyone know the results.

 

I am still not feeling up to par, but couldn't get an appointment for the PFTs until next week. My meditating has helped a lot, I just have to stay calm when I get the feeling of not getting air.

 

This disease is so draining ~ and no one, but no one understands. That is unless you have the disease, then you understand all too well.

 

Thanks again everyone ~

 

Much love,

 

Nina (DE)

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Nina,

 

I had the same problem you described in my first year of having scleroderma. It lasted a short time (about one week) and was very scary for me. When I would lay down, I could not breath, it felt like there was compression on my chest and I would feel better after I stood up. At the time I had skin tightening on my face, neck and upper chest.

 

My first doctor didn't have me tested for this symptom but I just realized in my case, it sounds like I had polymyositis. Thankfully it lasted a short time. I hope your condition improves so you can feel better soon.

 

Gentle hugs,

Razz

 

:D


Live well, Laugh often, Love much

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