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?

@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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In my case, I have never smoked except for one puff at age15, It hurt! I was a 105 MM Field Artillery safety officer ffight out of college from 27 Sept 1964 for about 1 year, then Assistent Clun Offocer for aniother year and 2 months. Plus p9oi2 2-week mmer camps afgain as artillery safety officer.. We were using repackaged ammunition left over from WWII. I was with the
Second of the 32nd Field Artillery Battalion. I was stationed at Fort Sill, Oklahoma. We fired all day long 5-6 days per week. Although I did not rotate to Viet Nam, I am sure the frequency of firing in Nam there was far less than at Sill;. Every day, at the end of the day, due to gun smoke bloeint towards us, my brass belt buckle was corroded, and had to be polished in preparation for the next day. We were given no heariing or breathing protection. We usually had a 3/4 ton pick up truck filled to the top of the bed with unused powder to burn at the end of the day on a range road. Now the VA hospital says my IPF and my high pitch hearing loss have nothing to do with my Military service. Too many years ago. My lung doctor just says IPF and does not have the brass to link it to my service. After mustering out, I was a restaurant assistant manager for about 1 year and since I have been an insurance agent for 47 years. I guess inhaling ball pen fluid for so many years caused my problems. Can you suggest anything for me to get assistance from the VA?

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I have been diagnosed with IPF also and have that the flu lately that gave me the symptoms you describe. I’m feeling better now but seem to get out of puff without much exertion. I’m pressing on and taking OFEV in place of Esbriet because of the restrictions associated with it. Anyone pursued stem cell therapy with positive results? I’ve been considering this but can’t seem to get enough positive vibes to pursue this treatment.

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Omg!! This is me. I have had pneumonia 2 times since sept. I also went through many test and procedures & after a lung biopsy was finally dignoaed with ILP & HIP & dyspnea. My fatigue is so, so bad. I also feel achey very badly probably 70%of the time. I also get very nauseous often & have a hard time with diood

Liked by robertjr

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

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@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?

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@ppeschke, I’m not sure I understand your question. Interstitial lung disease is a general category that includes many different lung conditions. Nonspecific interstitial pneumonitis is an interstitial lung disease that’s often present with autoimmune conditions (such as rheumatoid arthritis or scleroderma). Are you asking whether nonspecific interstitial pneumonitis has stages like pulmonary fibrosis?

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@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?

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

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@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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@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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Anytime we can understand better we have less fear.

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@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?

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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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@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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@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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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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