1. < Lung Health

IPF How To Cope with Sick Feelings

Posted by vaugen @vaugen, Mar 16, 2017

I got a type pneumonia in May 2015 an never felt same. I work in a high stress long hours job and in 2016 could not work 4 hours without resting and napping. I August 2016 I suddenly got out of breath climbing steps, mowing doing anything with my arms. I went to ER extensive heart evaluation was fine BUT my x-ray was not good. Had a CT showed PF did all blood tests in Sep the lung Biopsy end of Sep showed I had IPF. I started taking NAC and my ER visit 2 weeks ago shows no change. NAC maybe working??
BUT I have most days miserable. Get tired easy, the feel sick all over (like bad flu), chest feels full and tight, BP high 190/100 then goes down after sleeping, (I sleep 7 hours solid) muscle aches, weak, dizzy etc. My doc says IPF does not cause that. I do not want to take Esbriet cause I feel bad now.
Anyone experience these feelings?

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ppeschke | @ppeschke | Jan 11, 2018
In reply to @ppeschke "I have a question that is probably silly but I am curious....are there different stages of..." + (show)
@ppeschke

I have a question that is probably silly but I am curious....are there different stages of interstitial lung disease is unspecified interstitial pneumonia?

Jump to this post

I have been diagnosed with interstitial lung disease & unspecified interstitial pneumonitis possibly caused by arthritis is 20 years of bad fibromyalgia.
I guess what I'm asking is that in the last 4 minths my health has really declined and my life changing. I wonder are there stages to these diseases?

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ppeschke | @ppeschke | Jan 13, 2018
In reply to @annabeyta "Thank you, Linda, for your support. My family and friends don't really know what to do..." + (show)
@annabeyta

Thank you, Linda, for your support. My family and friends don't really know what to do with me. I think they notice that I am not the cheerful soul that I was 3 months ago, before the diagnosis. But other than that, I don't think they understand the shock that I am feeling. I was thinking of creating a brief sheet of paper with the topic of IPF for Dummies, only not with those exact words, of course, to share with others. My family doesn't quite understand the "down" days that I have. They think that what I need may be psychological counseling and a quick walk around the block. They think that perhaps my sleepiness and aching joints are all in my mind. It is so comforting to find people on this website who have had my same symptoms and who have not ended up in a mental ward. They have not only survived past the statistical "end" date but are living meaningful lives. Thank you so much for reaching out to me and sharing some of your own stories. I will definitely check out the links that you listed on your reply. Blessings to you and your family. --Ann Abeyta

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Ann you are not alone. I was diagnosed the week of Christmas & I've been on an emotional roller coaster. I fight arthritis & joint pain & terrible fatigue and get short of great just sitting or laying down or talking. I have an appointment at Mayo Clinic in a month and I'm hoping there's something they can do for me.
Keep your chin up

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Linda | @llwortman | Jan 13, 2018
In reply to @annabeyta "Thank you, Linda, for your support. My family and friends don't really know what to do..." + (show)
@annabeyta

Thank you, Linda, for your support. My family and friends don't really know what to do with me. I think they notice that I am not the cheerful soul that I was 3 months ago, before the diagnosis. But other than that, I don't think they understand the shock that I am feeling. I was thinking of creating a brief sheet of paper with the topic of IPF for Dummies, only not with those exact words, of course, to share with others. My family doesn't quite understand the "down" days that I have. They think that what I need may be psychological counseling and a quick walk around the block. They think that perhaps my sleepiness and aching joints are all in my mind. It is so comforting to find people on this website who have had my same symptoms and who have not ended up in a mental ward. They have not only survived past the statistical "end" date but are living meaningful lives. Thank you so much for reaching out to me and sharing some of your own stories. I will definitely check out the links that you listed on your reply. Blessings to you and your family. --Ann Abeyta

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Dear Ann:
I am so grateful to the all amazing Lung Physicians (most respectfully) at Mayo Clinic.
Please keep me posted. I’m here for you on Connect! Have you checked out Dr Amit Sood’s amazing free app yet?
hugs
linda

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boredsilly | @boredsilly | Jan 13, 2018

Yes, pnemonia twice, pacemaker, nebulizer, many inhalers. Last Dr. said to exercise more(?) Next is a stop to the Urologist

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Snookie | @mycatischi | Mar 6, 2018
In reply to @rayhastings "I was diagnosed with IPF going on 6 years ago. I am still around to talk..." + (show)
@rayhastings

I was diagnosed with IPF going on 6 years ago. I am still around to talk about it. There has been a lot of research done over the past several years that may develop into a cure. It is difficult but we need to keep a positive arritude and work toward develope a cure. The government Just contributed 62 million dollars to. Drug company with a promising drug. Try to keep your spirits positive.

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@Gray

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Snookie | @mycatischi | Mar 6, 2018
In reply to @rayhastings "I was diagnosed with IPF going on 6 years ago. I am still around to talk..." + (show)
@rayhastings

I was diagnosed with IPF going on 6 years ago. I am still around to talk about it. There has been a lot of research done over the past several years that may develop into a cure. It is difficult but we need to keep a positive arritude and work toward develope a cure. The government Just contributed 62 million dollars to. Drug company with a promising drug. Try to keep your spirits positive.

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Really? this is good news for a change...Congrats on your six yrs. what are you doing to remain healthy....are you exercising? I was diagnosed IPF (I want to say couple yrs but it is looking like it has been much longer. I am going back to Henry Ford for testing Friday, it's where I go for tests & the like & have a great team,I also have a pulmonary specialist near where I live I see.I am not on anything at present.I am so encouraged by your post & if you could give me more info I would be very grateful

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Snookie | @mycatischi | Mar 14, 2018

Anytime we can understand better we have less fear.

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Snookie | @mycatischi | Mar 15, 2018
In reply to @ppeschke "I have a question that is probably silly but I am curious....are there different stages of..." + (show)
@ppeschke

I have a question that is probably silly but I am curious....are there different stages of interstitial lung disease is unspecified interstitial pneumonia?

Jump to this post

I'm just with you & wonder the same thing if there are stages in this disease...Do they (at Mayo) somehow define what stage one is in?. Good Luck & this I know for sure ...sometimes when one is boxed into stages or questions like "What happens next? we set ourselves up for disappointment, hurt & anger. I think it's good to listen & kinda know what is usually next & yet keep a healthy distance from "stages" & of course this is my opinion & how I feel....only. Ciao...Snookie

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rfree1 | @rfree1 | Apr 3, 2018
In reply to @colleenyoung "Welcome to Connect, @vaugen. I'd like to introduce to a few members who also have idiopathic..." + (show)
@colleenyoung

Welcome to Connect, @vaugen.
I'd like to introduce to a few members who also have idiopathic pulmonary fibrosis (IPF). Please meet @tula @steve1948 @rayhastings @oliver22 @loisblo @agullotti @kelloggk @raincrowe @lydoff65 @dfay and @myiokubo.

Vaugen, you mention a number of side effects that you're experiencing. I wonder if they might be a combination of side effects of IPF and/or the medication you're talking: N-acetylcysteine (NAC). According to the following 2 articles IPF can cause your muscles and joints to ache and NAC's side effects include tightness in chest, fever, nausea and more.
- Pulmonary fibrosis symptoms http://mayocl.in/2fPg1ds
- Acetylcysteine (Inhalation Route) side effects http://mayocl.in/2ntl8Tp

I also encourage you to read and take part in this discussion on Connect:
- Pulmonary Fibrosis http://mayocl.in/2ntrBxC

Vaugen, did your symptoms appear once you started NAC? Are you on oxygen?

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I would like to know if there is anyone else in this group with PF caused by AMIODARONE. My husband was diagnosed with PF in 2013. My husband was on Amiodarone for 7+ years with out any testing such as PFT's or HRCT scans. As we search the internet there are very reputable websites that do say that PF can be caused by this heart medication. Before 2013 he was misdiagnosed with COPD which happens alot...being misdiagnosed. My husband is on oxygen 24/7. We do have portable O2 which can go up to 5LPM. For now he is stable but his DLCO keeps going down last PFT the DLCO was 31. Our pulmonologist who treats many PF patients agrees that he got it from the medication. He is going to pulmonary rehab too and uses a nebulizer. Prayers for everyone with this devastating disease...

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Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 4, 2018
In reply to @colleenyoung "Welcome to Connect, @vaugen. I'd like to introduce to a few members who also have idiopathic..." + (show)
@colleenyoung

Welcome to Connect, @vaugen.
I'd like to introduce to a few members who also have idiopathic pulmonary fibrosis (IPF). Please meet @tula @steve1948 @rayhastings @oliver22 @loisblo @agullotti @kelloggk @raincrowe @lydoff65 @dfay and @myiokubo.

Vaugen, you mention a number of side effects that you're experiencing. I wonder if they might be a combination of side effects of IPF and/or the medication you're talking: N-acetylcysteine (NAC). According to the following 2 articles IPF can cause your muscles and joints to ache and NAC's side effects include tightness in chest, fever, nausea and more.
- Pulmonary fibrosis symptoms http://mayocl.in/2fPg1ds
- Acetylcysteine (Inhalation Route) side effects http://mayocl.in/2ntl8Tp

I also encourage you to read and take part in this discussion on Connect:
- Pulmonary Fibrosis http://mayocl.in/2ntrBxC

Vaugen, did your symptoms appear once you started NAC? Are you on oxygen?

Jump to this post

Welcome to Connect, @rfree1. What condition was your husband taking amiodarone for? A-fib or other heart condition? Are any of the PF symptoms reversible now that he's not taking the medication?

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