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?

@annabeyta

I have just been diagnosed with IPF. As the saying goes, “I’ve got a lot of living to do.” I am not ready to die in 3 to 5 years, as too many of the statistics state. I want to try everything possible to live a few more years. I am willing to try Esbriet, but I need to get on some type of research project or be awarded a grant. With my Medicare and my insurance, I would still need to pay an additional $2,800 a month. Undoable for a retired teacher. I have “down days.” These are days when I am so tired that all I can think about is sleeping, reading, or lying on the couch to watch movies, one after another. Even on good days, I don’t have a lot of energy and I ache in my joints and my muscles. My energy gets spent easily. I do have interests in collecting teddy bears for orphanages in Ukraine, making jewelry, reading. All of these activities are sedentary so I realize that I need to add some exercise to my days. Doing the dishes and sweeping the floor is not what I have in mind as far as physical activities. I also have osteoarthritis in my lower spine so I can stand or walk for up to 15-20 minutes. Past that I’m in too much pain. I want to be the cheerful, optimistic person that I have always been in my life. I used to think nothing of rearranging my livingroom and painting the walls in a weekend. Those days are gone. I need to look forward to more activities in my life. I have a caring caregiver. I am 63 years old. I am generally sad. And… I need to get out of this slump. I hope that by getting on a website like this I can hear from others in similar circumstances. Who knows, maybe I could even help someone else. I hope so. Thank you for reading this, Ann Kathleen

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hi Anna:Live and live long! I say this because I am a 9 year 5 month lung cancer survivor. I was blessed with a second opinion st Mayo Clinic that saved my life. It inspired me to get upAnd move despite the pain and odds! Watch my TedX talk on UTube "Beating The Odds & Summiting Kilimanjaro with One Lung."
Lung cancer diagnosis and surgery became my blessing. Now, I live life to the fullest one day at a time. Oh, I forgot to say, I also had a wedge in my lower lung lobe removed due to PF.We are living in a remarkable time withamazing research happening everyday!
I truly admire your "Love of Life" and your desire to help others, which is an inspiration. This is my passion as well!
I welcome you to Connect where there is a wealth of support and resources. The people are wonderful as well !  You deserve a big cyber hug. linda 

Liked by annkathleen

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@kturchin

I feel the same every day every muscle aches and joints my feet and ankle joints even hurt I’m tired and on 4 liters of oxygen when active and I still will get out of breath and have to stop and do breathing exercises I was in cellcept that shut my kidneys down to 50 percent working and I tried imuran and I was deathly ill throw up unable to eat and barely could keep liquids down for 6 days I won’t take either one again I’m at a loss I’m in so much pain and the doctor does nothing I’m going to keep on hanging in there you too it’s hard

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hi, kturchin i was dx with ipf 6 yrs ago and went thru the usual meds for ipf, imuran, prednisone, with insignificant results,then Esbriet was made available… i have been using for two n half yrs breathing tests are stable… i take NO other meds but use 02 24/7 4ltrs i feel as long as the oxygen is available and i can av9id contracting something else! i wll be around for awhile. i am 80, never smoked! Mayo dz me 2002 with hypersensitive pneumenitis, which cleared up for ten yrs and then ipf. i exercise very little due to fatigue sleep alot and just glad to be here!

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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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@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: Sounds like a great plan !
I also encourage reading Dr Amit Sood’s HAPPINESS book.
I had the honor and pleasure of being involved with Dr Sood’s Paced Breathing Research Study 9 years ago, his teachings helped me accept my lung disease, move beyond the shock and stigma and live!
Let’s stay Connected, ok?
hugs
linda

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Linda, I would love to stay connected with you. I guess I am still in the “shock” stage, but I want to move on to investigation and proactive behavior, rather than to stay in the self-pitying hole that I have fallen into in the recent past. Today my husband and I decided NOT to sell our RV and to go exploring instead! I will read the Sood book that you recommended. Thank you.
I am not afraid of dying, I am just not ready yet. I still have things to do.
A big hug back! Ann (living in Albuquerque)

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@kanaazpereira

Hello @annabeyta,

I’d like to welcome you to Connect, and sincerely thank you for sharing your story and your thoughts; we are so happy that you’ve joined us.

We have a few discussions on IPF and pulmonary fibrosis that might interest you:
Stem cells for Pulmonary Fibrosis: http://mayocl.in/2s0BVfW
Pulmonary Fibrosis: http://mayocl.in/2nbVlMF

And, while we wait for others to join the conversation, I think you might enjoy watching these stories shared about the Harmonica therapy and the Breathless Choir for people with lung disease.
http://mayocl.in/2nsjVuI
@annabeyta, I also want to let you know that you’ve discovered what Connect is all about: a community of incredibly supportive people, many who share your journey, and help each other along the way with their shared experiences, questions, insights, suggestions and tips…just as you have done with your first post.
So do keep talking…we’re listening.

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Thank you for listening. I thought that I had found so much on the internet and you have turned me on to SO much more! Thank you! I am researching! I guess I have more homework to do! — Ann

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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

Liked by kturchin

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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

Liked by kturchin

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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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