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?

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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My wife have traveled a lot over the past two years. It’s not easy but it is easier than sitting around waiting to die.

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I’m trying my husband of 10 years decided he did not want to take care of a sick wife last year when I was diagnosed I found out he has been cheating on me also besides the emotional abuse this last year I’m filing for divorce the cheating was the last straw I have not dealt with being sick well at all I’m in therapy for that as well as my marriage ending I’m hoping for a better life now that I will be away from a very stressful relationship thanks for the supporting

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It is good to hear that you have taken the bull by the horns and that you are getting rid of old trash around your house. I have only just begun checking out information on this site, but I see a lot of support and caring. It sounds like your life is going to be one of great change. I hope that you can make those changes create a better life for you. I wish you the very best. — Ann

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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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Ray, I hope that you are a good caregiver for your wife. It is so hard and so very important, especially when traveling. I feel guilty having my husband lug all of our baggage and carry my tanks and other heavy essentials. He doesn’t ever complain so I must say that I am very lucky.
I don’t want to sit around feeling sorry for myself. I need to get moving and push myself harder. Where have you traveled to? Have you found some places easier than others? What have you found to be helpful, as in wheelchair, or walker, portable oxygen concentrator? It would be nice to hear some traveling tips. I am lucky to have a wonderful husband, but we have yelled, screamed, and cried at each other more over the past 3 months, since my diagnosis, than ever throughout our marriage. It seems so easy to take out our frustrations on those we love. I need to stop showing my frustrations towards him and I need to stop playing the counterpart when he is angry Not easy to do. –Ann

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Vaugen, I have been diagnosed with IPF but do not have the symptoms you describe. I do get tired easier than I used to but I’m also now 79 and I’m not sure how much of not being able to do as much as I have done in the past or how much of the tired feeling is just age. I have no nausea or flu like symptoms. I started taking OFEV instead of Esbriet back in June. I don’t know how much this is helping, I still have the dry cough and it seems to be worse when out in the colder weather or when I have had moderate exertion. Earl

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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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Ray,
What is the drug you are talking about. I have been diagnosed with IPF earlier this year. What do you think about the stem cell therapy that is out there. Have you considered that at all?

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Yes I’m achy and have pain in all my joints everyday since being diagnosed in May 2015 . I get no help from the doctors and I have read on many articles that muscle and joint pain is caused by IPF which to me and I’m not a doctor if your oxygen goes low like mine does up and down all day because of no activity to move around – your body supports your organs with oxygen first then your limbs I have said this non stop for two years I get no help and am in pain every day I’ve read many articles about lung function etc and they say exactly what I’ve been telling the doctors so yes you doing get muscle and joint pain they just don’t know anything I’ve come to believe about IPF period so I guess we just suffer the pain fatigue and pain to breathe until we die ? I’m disgusted needless to say I’ve just about decided to not even go to the doctor it’s so frustrating and they have not helped me at all the prednisone, cellcept, Imuran made me sick and did nothing but cause cataracts, bone loss, pre diabetes or I pray for all of us for a doctor to listen . Good luck

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@kturchin

Yes I’m achy and have pain in all my joints everyday since being diagnosed in May 2015 . I get no help from the doctors and I have read on many articles that muscle and joint pain is caused by IPF which to me and I’m not a doctor if your oxygen goes low like mine does up and down all day because of no activity to move around – your body supports your organs with oxygen first then your limbs I have said this non stop for two years I get no help and am in pain every day I’ve read many articles about lung function etc and they say exactly what I’ve been telling the doctors so yes you doing get muscle and joint pain they just don’t know anything I’ve come to believe about IPF period so I guess we just suffer the pain fatigue and pain to breathe until we die ? I’m disgusted needless to say I’ve just about decided to not even go to the doctor it’s so frustrating and they have not helped me at all the prednisone, cellcept, Imuran made me sick and did nothing but cause cataracts, bone loss, pre diabetes or I pray for all of us for a doctor to listen . Good luck

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Oh man, Kturchin I hear your frustration loud and clear. You’re certainly not alone in experiencing joint pain associated with IPF. I thought you might appreciate this article from Pulmonary Fibrosis News:
– Adjusting to Pain: The Reality of Living with IPF https://pulmonaryfibrosisnews.com/2017/10/12/ipf-reality-of-living-by-adjusting-to-pain/

Have any gentle exercises or rehab techniques helped to ease pain for you? What tips might you share?

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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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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

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