IPF How To Cope with Sick Feelings

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

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

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?

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

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?

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?

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.

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

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

@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?