Pulmonary fibrosis is a respiratory illness in which a thick and stiff tissue develops on the lungs which is later accompanied by scarring. Pulmonary fibrosis (PF) can develop as a secondary disease associated with pneumonia, tuberculosis, systemic lupus erythematosus, sarcoidosis or rheumatoid arthritis. External causes include exposure to industrial asbestos fibers, silica dust, animal droppings and chemotherapy and radiation treatment. Most patients develop pulmonary fibrosis for unknown reasons, which is called idiopathic pulmonary fibrosis (IPF).
Pulmonary fibrosis isn’t always associated with pain, although it almost always causes uncomfortable shortness of breath and a severe cough. Because PF can be a secondary disease associated with other painful conditions, some people diagnosed with PF can experience pain from those sources.
The most common symptoms of PF are shortness of breath and a dry, hacking cough due to the scarring of the lungs. It can also cause muscle aches and sore joints. People with pulmonary fibrosis who experience pain are often suffering from another problem like an injury to the rib cage or back from severe coughing, or from other parts of the body due to a lack of oxygenated blood flow. Additional symptoms of PF include severe fatigue, weight loss and clubbing of the fingertips.
Common Pulmonary Fibrosis Symptoms
Pulmonary fibrosis starts out causing problems with the lungs. One of the first things that people start to notice is a shortness of breath that develops when they exert themselves. Some people even experience constant shortness of breath. The next symptom that typically develops is a cough that won’t go away. This cough is usually accompanied with the constant feeling of being very tired. Some people who develop PF get fevers, lose weight and their muscles and joints start to become sore.
As the disease progresses and damage builds in the lungs, the lungs become unable to oxygenate the blood, causing a lack of oxygen to the organs and bodily tissues. This lack of oxygen often leads to aching muscles and joints.
Another effect of pulmonary fibrosis that can be painful to some people is clubbed fingers and toes. Not everyone experiences this symptom, but it is a common complaint for those with PF. Clubbed fingers and toes are caused by the chronic under-oxygenation of the extremities. It is often associated with a cold sensation which is also bothersome for many patients with PF. A less common symptom of pulmonary fibrosis that can cause pain is muscle and nerve damage. While not a symptom of the disease itself, it can happen due to a lack of oxygen in the blood.
Many patients with pulmonary fibrosis report chest and back pain. Severe coughing is hard on the pulmonary muscles that surround your lungs and are responsible for respiration. They often become sore and can be pulled or strained. People with pulmonary fibrosis can also feel soreness in these muscles during the expansion and contraction of the thoracic cavity. It is an unpleasant, painful symptom that leaves patients feeling uncomfortable.
How to Treat Pain Associated with Pulmonary Fibrosis
If you or a loved one is suffering from symptoms of PF that cause pain, there are some treatment options that are aimed at improving your quality of life. Palliative care can provide relief from the painful symptoms and stress that goes along with having a chronic illness like pulmonary fibrosis. Palliative care treatments include things like medications and enzyme supplements that may provide symptom relief for shortness of breath and oxygen therapy. Other techniques and medications can help relieve depression, calm nervousness and manage pain.
It can be shocking to be diagnosed with pulmonary fibrosis–for both the patient and their family. It’s important to ask your doctor for a referral for palliative care because those specialists are the best at treating and reducing the symptoms of pulmonary fibrosis that can be painful.
Living with pain associated with a chronic illness is unpleasant. But there are ways to avoid and manage pain. Things like the way we live and what we eat affect our nervous system and our perception of pain. While pain can significantly impact our lives, understanding the pain and learning to deal with it in a more positive way through a healthy lifestyle can significantly improve quality of life for those living with diseases like pulmonary fibrosis.
Never disregard professional medical advice or delay in seeking it because of any information received from us.
nancy criswellPosted on August 6, 2019 at 3:55 am
Why no mention that there is no cure? I was diagnosed over a year ago and that’s the first thing I was told. Also, meds MAY slow progress but no guarantee. 3-5 yr life expectancy once diagnosed.
Bonnie MillerPosted on November 16, 2019 at 9:18 pm
I have a form of pulmonary fibrosis called UIP or Usual Interstitial pnemonia. I was diagnosed in2015 and everything I read said I had3-5years to live. I asked my doctor what he thought and giving me an honest answer(which is what I wanted) said I probably had 2 years. I started out taking a medicine to slow the progress down but had to switch to Ofev and have taken it ever since.
I was on oxygen 24/7 but now only use it occasionally. I truly believe my faith and trust in God has gotten me through.
I saying all this to give you hope. Try to stay positive and trust.
charles relationPosted on January 28, 2020 at 11:18 pm
is this bonnie miller in escondido calif. i to have ipf really bad .but i have been with it for 4 yrs or so. i am in a lot of pain all day long and get no medications for it. i have arthritis,stint,pacemaker,clubbing in toes and fingers. muscle and joint pain through out my body.i do physical therapy but it makes my body hurt worse.it does help with my breathing once ive been doing for awhile.
Bonnie MillerPosted on May 17, 2020 at 2:00 pm
No I am from Ohio….it has now been going on four years since I was diagnosed…no oxygen and not much discomfort except pain occasionally. I am blessed to be as healthy as I am. Doctor says my lungs sound good. To God be the glory!
Charleen WilliamsPosted on May 11, 2022 at 12:58 pm
I was told that I have IPF May of 2020 I am on Ofev no oxygen as of the end of 2021. But the Nausea and Diarrhea is really getting annoying it is there’s something better to eat than that will maybe settle my stomach and stop the diarrhea I know there’s no cure for this but I’m 59 years old I’ll be 60 in November and I have a lot to live for getting a new grand baby and all I just want somebody to help me figure this all out. That has this sickness.
Elle MartinsPosted on August 20, 2021 at 9:59 pm
I am going through the same thing you are, and let me just say, I had to ask my doctor for pain meds which without them , I wouldn’t be able to get out of my bed. You shouldn’t go on going on with the pain because , I am sure when the coughing starts oh my God the pain becomes unbearable. Then, I start getting pain down my legs. it’s too much to bear. It’s bad enough having pulmonary fibrosis so the doctor should make you at least feel comfortable.
AngelaPosted on November 13, 2022 at 1:48 pm
Hi how are you? I too have the disease. It was encouraging to read your comments….your attitude and expression of faith. As a Christian I look forward to a time when there will be no sickness, no pain or death on this earth (revelation 21:3,4) and for man\woman to live forever amongst family and friends (psalm 37:10,11,29) very soon. I pray this brief message gives you some comfort…and hope…x
Yolanda HinojosaPosted on August 6, 2019 at 6:09 am
I was diagnosed withi idiopathic pulmonary fibrosis 3/2018. I have all o fthe symptoms describe. The last 2 weeks I have had had pain in my ribs especially at nite need to go to dr? I can hardly eat, my breathing is bad. I tire easly, cannot sleep,,I have lost 50 lbs and I am 75 yrs oldd
Kimberly ScottPosted on September 3, 2019 at 12:22 pm
I’ve been living with pulmonary fibrosis for a few years now. My condition is slowly getting worse. I call my chest pain flares. To all the sufferers out there try to stay calm.. stress makes my pain worse.
Marilyn BurtonPosted on November 11, 2019 at 4:11 am
Are chest pains flairs? They are awful and I can hardly walk, do steps, shop, go out. I just stay home. Easier for everyone. Awful disease. Nothing helps too much . On 8 prednisone a day right now. A wonderful doctor, but nothing helps too much for quality of life. I have almost gave up.
JenniferPosted on December 4, 2019 at 2:52 pm
Does anyone suffer a pain like pleurisy with there PF
PF NOWPosted on December 11, 2019 at 1:56 am
Pleurisy is a type of chest pain that generally happens due to an infection. It is a sharp stabbing pain that is felt every time a person who is affected inhales deeply, coughs, laughs or sneezes. It could be due to a bacterial infection such as pneumonia, or a virus such as the flu or even possibly a fungal infection. Usually, once the infection is treated, the pain goes away. Autoimmune diseases such as lupus or rheumatoid arthritis can also cause pleurisy. These diseases are associated with pulmonary fibrosis in some people. Thus, it is possible for people with PF to suffer from pleurisy.
PF NOWPosted on December 11, 2019 at 1:59 am
It would be very useful to our readers if any of our members who have had pleurisy can share their experiences on this forum.
Sarah KempPosted on January 1, 2020 at 5:37 pm
My partner had pleurisy this time last year (Jan 2019) and also had an empyema (lung cavity abscess). He has been left with “lesions” and scarring in his lungs, and is in almost constant pain and is breathless. The hospital has signed him off as there’s nothing they can do apparently. He is just taking amitriptalyene for the pain, but it isn’t doing much. He has been on codeine, oromorph and other concoctions too. Anyone else had similar issues?
MarshaPosted on August 15, 2020 at 11:10 am
Unfortunately, I too suffer from massive scaring due to PF. I have been hospitalized nearly 40 times in 4 years due to pain and pneumonia. I have had to self isolate before Covid 19 required isolation. I have never experienced such pain. I am currently on Dilaudin for pain. I was on steroids until it caused my bones to weakened. This weakness resulted in breaking my back 3 times. I suffer from pain by day and insomnia by night. I wish you well. Without the Lord I would not have survived such dreadful complications. May you too find faith and peace in God’s abiding love and strength. Marsha
Molly McKenziePosted on June 11, 2021 at 8:38 pm
I am Molly. I am 58 and I have had IPF for 4.5 years now. It has been in the last 2-3 months that things have taken a turn. Oh and yes, I agree with your comment as I have RA and get pneumonia like crazy. Even though I have the lifetime shot. Anyway, my situation since the very beginning of April seems to be moving at a very alarming speed. i have lost 19.8 pounds, breathing is so short it’s ridiculous. Even had to stop caring for our last grandson because of shortness of breath. That was a killer since he is only 2! Since cared for all the others until entering school. The fatigue is unreal and I have zero interest in food, still losing weight. Ache everywhere as I also have fibromyalgia and Migranes and Epileptic seizures. But, I guess you’d say all of those don’t EVEN amount to a hill of beans! Not when this IPF rares it’s ugly head. Mine was just coasting along and BAM! I have people telling me its all gonna be ok! Well ya’ll better do some reading. Cause if the statistics are correct and this doesn’t slow back down? I think I’m on my way out before the end of the year!
I would love to stay, but don’t like what is happening right now……
Neha ShahPosted on June 15, 2021 at 9:53 pm
Thank you for sharing. We’re so sorry to hear how alarming and scary it’s gotten since April. It can be extra upsetting when people try to encourage you but don’t truly understand all that you’re going through. Please feel free to connect people with our staff at any point – we are always happy to help educate friends, family, neighbors, or anyone else on the realities of IPF.
More importantly, please know that we are here for you. Though much of the information out there is grim, it’s worth noting that the research we’ve done is promising. Please let us know if you’re interested in reading those publications.
Either way, we hope you’ll consider connecting with others in the community who can relate. Our private Facebook group is a great space to share your story & be heard by other people who already have IPF or PF. The link is here: https://www.facebook.com/groups/1198991686930106. Our virtual support group is another great way to process; the signup form is here: https://docs.google.com/forms/d/e/1FAIpQLSdKO56AaaMZ9fHhwgcztSH5MUdoehsr9RsUdFQoRE1WPfN6uw/viewform.
We’ll be thinking of you and hope you’ll keep us posted on how everything’s going for you.
LeePosted on December 29, 2022 at 12:37 am
Hi my name is Lee i was dignose in oct 2022.im 54 i was a bys driver cross country. Was force to leave my job.
Ice been in hosoital 3 times all 10. Days at atime.
I was put on oxygen 4 liters in october. Then in decwas put on6
My oxygen srops everytime i walk
In on ofev i been very luck no side effects. But i seem to be gwtti g worse. Wgats next you all. What should i expect..
LisbethPosted on December 23, 2019 at 12:18 pm
My father has IPF and it is very hard to see him suffer with this disease and was told he is in the end stage. He coughs and can barely do anything. He struggles breathing every time coming from the bathroom. I do not understand that. Does anyone with IPF struggle coming from the bathroom and if so, what do they do? I feel so bad for him! He is also very tired and on 8 liters of oxygen. He has blacked out 3 times while I have visited him too. Has that also caused anyone with with IPF to blackout? Please any advise would be helpful. I pray for anyone with this disease.Thank you. Lis
PF NOWPosted on December 27, 2019 at 7:59 pm
Hi Lisbeth, I am so sorry to hear about your father’s condition. I know it is heartbreaking to see someone you love, suffer. Here is a link to an article that may help you understand some of the symptoms he may be experiencing and some things you can do to support him:
Please reach out to us if you need any more information.
charles relationPosted on January 28, 2020 at 11:32 pm
i to have the same conditions .i just sit on the toilet and try not to force anything as it just makes it worse.if you need to turn up oxygen to try and get more relief or turn it up when he gets up.i to get dizzy spells.i use to have them really bad.need to get up slower and exercise when possible .it does help but be carful as you still might get dizzy spells.if there bad i would see a doctor.
LizzyPosted on December 26, 2019 at 10:20 am
I lost my granny two week ago to pulmonary fibrosis. She had only been in hospital with it 3 week, before she went in hospital she was managing to look after herself almost independently. All caused by an African grey parrot, if only we would have known what he could cause 🙁
PF NOWPosted on December 27, 2019 at 7:52 pm
I am so sorry for your loss. We, at Pulmonary Fibrosis NOW! are doing everything we can to increase awareness of this lesser known progressive disease. We are also conducting research on treatments, including natural, supplemental and alternative therapies for treating chronic pulmonary fibrosis.
LisaPosted on January 30, 2020 at 9:00 pm
New to the group, I went to the hospital for pleurisy and my xray showed pulmonary fibrosis. I go to a pulmonary MD next week. Its very stressful and scary. I am only 48. My anxiety makes it 100 times worse. Any tips?
PF NOWPosted on January 31, 2020 at 7:17 pm
Thank you for reaching out to the group Lisa. A diagnosis of pulmonary fibrosis can be overwhelming and anxiety can definitely contribute to the feeling of breathlessness and uneasyness. I feel that a good way to deal with this is to get as much information and knowledge about this condition prior to your appointment. This will also help you to ask appropriate questions to your pulmonologist at your appointment. I am including some links that may help prepare you for your appointment:
Please reach out to us if you have other specific questions. Hang in there…
Bonnie MillerPosted on May 17, 2020 at 2:15 pm
I don’t know if this helps but I think attitude can play a big part in your progression. So many people don’t even want to think about their own death but reality is thatit is a part of life…just the end here on earth. I try to do anything I can that isn’t harmful but new to me. Yesterday I attended my first ever rally…..at a prison and I am 71 yes.old. Don’t let life pass you by…be positive on a daily basis. Your faith can also help…..get a support system.
Joy HoffmannPosted on October 11, 2020 at 3:12 am
I wish a person who has had ipf for mire than 5 years would describe when they got each symptom.
I was diagnosed in March 2920
On OFEV for all that time.I am lucky to not suffer any side effects from that med.so far feeling good except for some pain that copies a heart condition.
Had all tests .Not heart.
Ear healthy.take my meds….walk 3/4 miles a day..no alcohol..only symptom is a slight shortness of breathe mostly on stairs.
Oh,I am 82. Years old and very healthy until ….IPF diagnosed
My sister died at 72 before OFEV
Thanks to all who share.Sad fir those diagnosed so young
Cure coming in 2023 …so hang on! As soon as clinical trials are complete
PF NOWPosted on October 13, 2020 at 10:33 pm
Hello Joy, glad you are doing so well and thank you for reaching out to us. So sorry to hear about your sister. Would you like to join our facebook group and post your question regarding symptoms on that group? This way more people may see your question and you could get the answers you are looking for. May be you could also write about your sister’s course of disease if you’d like. Can you tell us which clinical trial you are referring to? Thank you very much.
Julie Anne BurtonPosted on June 12, 2021 at 1:00 am
These comments have been great for me to read, I was diagnosed with ipf in 2019. My dad had the disease, he had 2 lung transplants but sadly died 2 months after the second one. Has anyone had a lung transplant, I have just been offered to go for consultation for maybe having one. My name is Julie and I am 66years old.
Neha ShahPosted on June 15, 2021 at 9:50 pm
Thanks for posting. We are so sorry to hear about your father. It sounds like he was quite the fighter and like he’d have a lot of compassion for everything you’ve been through too.
To answer your question: yes, there are definitely people in our community who have had a lung transplant. You can join our online community forum to connect with people & hear their stories here: https://www.facebook.com/groups/1198991686930106.
You can also sign up for our upcoming support group which will be hosted on Zoom: https://docs.google.com/forms/d/e/1FAIpQLSdKO56AaaMZ9fHhwgcztSH5MUdoehsr9RsUdFQoRE1WPfN6uw/viewform.
We do have more information on transplants available at https://pulmonaryfibrosisnow.org/2019/04/18/qualifying-for-a-lung-transplant-everything-you-need-to-know/.
Please let us know if you have any other questions!
ShannonPosted on December 3, 2022 at 1:54 pm
I just picked up my ct scan of abdomen and pelvis. Findings say lungs minimal fibrotic scarring and atelectasis noted within right middle lobe. I looked it up and my world just came crashing down. Ive been having pain in lungs upon breathing but just chalked it up to smoking flavored vapes. I was having the scan not for lungs for Lower left flank pain. I haven’t even see the dr yet my follow up for CT results are next week. I wished I never picked up my results early. I dont know what to do now except think its a mistake can you really get diagnosed this way. By Fluke from an abdomen CT scan. Is this it the pulmonary fibrosis diagnosis or will i need more test to “confirm” . I’m sorry I’m rambling .any advise out there.
ShannonPosted on December 3, 2022 at 2:04 pm
Also i just read COVID could cause PF I had COVID 3 times. :(:(:(
Guess I didn’t beat the virus after all…