What Pulmonary Fibrosis Feels Like

What Pulmonary Fibrosis Feels Like

As a patient living with idiopathic pulmonary fibrosis (IPF), I can’t count the number of times that close friends and family members have asked me to describe what this disease feels like. While I do my best to share my experience with IPF, I’ve been unsatisfied with the explanations I’ve given them. I have a hard time putting into words the physical challenges of IPF and the panic I experience when I’m breathless.

If you’ve ever felt short of breath from participating in a physical activity you hadn’t trained for, or from a respiratory virus, you can relate to how distressing it is. However, there is one significant difference between this type of breathlessness and that experienced while living with IPF. In the previous example, people know their breathlessness will subside and breathing will return to normal. Unfortunately, those of us living with IPF cannot take comfort in knowing that our breathlessness will be short-lived, and many of us live in a constant state of fear as a result.

In addition to the mental anguish of having IPF, the physical challenges of this disease are not for the faint of heart. IPF requires pain management, especially toward the end of one’s life, as has been discussed recently in the Pulmonary Fibrosis News Forums. However, describing what that pain feels like to someone who has never lived with a lung disease is difficult.

Recently, in honor of Cystic Fibrosis Awareness Month, I watched an advocacy video in which healthy people were asked to participate in an activity that resembled what breathing was like for those living with cystic fibrosis (CF). While I don’t know what it’s like to have CF, I wondered if people would have a similar reaction to a simulation of breathing with lungs filled with fibrotic tissue.

A few days later, a close friend asked me, “What does it feel like (physically) to have IPF?” Since then, I’ve been thinking of a response. Following are some examples I came up with:

  • Burning chest: Have you ever tried to participate in a physical activity you hadn’t trained for, leaving your chest and lungs on fire afterward? Unfortunately, this is a familiar feeling for those of us living with IPF. I assume that this burning sensation is due to the fibrosis in our lung tissue that inhibits adequate oxygenation. Unlike with healthy lungs, this feeling doesn’t go away with rest or medication.
  • Upper back pain: This pain can be centralized in one area or widespread across the upper back. It’s typically caused by frequent coughing that makes the surrounding muscles, particularly between the shoulder blades, extremely sore. I’ve heard this described as “rib cramping” because sometimes the pain can extend beyond the back area and travel around to the front of the chest cavity.
  • Frequent headaches: Unfortunately, I have regular headaches that are likely due to chronic under-oxygenation. When I put on my supplemental oxygen, I often feel better, but headaches are a common symptom of IPF that I can’t avoid.
  • Physical discomfort when lying down: Many of us turn to the comfort of our beds when we need to rest. Unfortunately, for those living with IPF, lying flat can be a considerable source of anxiety due to the inability to inhale deeply in this position. Lying on my back causes a bout of coughing that doesn’t subside until I sit up. This situation isn’t optimal for getting a good night’s sleep. My inability to properly inhale causes me both pain and frustration. Additionally, while lying flat on my back, I feel pressure on my chest.
  • Exhaustion: Many people experience fatigue during their lifetime. However, I think IPF-related fatigue is a little different — not worse, but different — because our bodies are forced to rest or we risk our fatigue becoming a crisis. The inability to breathe freely and the constant coughing are physically and mentally exhausting. Our bodies can’t use oxygen as freely as healthy bodies can, which means our organs are deprived of what they need. This forces them to work harder, which leads to further fatigue.

How would you describe living with IPF/PF? Please share in the comments below.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!

22 comments

  1. Cynthia says:

    Well said, Charlene. I would add the feeling that you’re not on top of your game mentally. I guess you’d call it brain fog, but it’s often coupled with dizziness. When it’s bad I feel I can’t bring much to a conversation or a meeting.

    • Charlene Marshall says:

      Hi Cynthia,

      Thanks for reading my columns and getting in touch via the comments. As always, it is great to hear from you! I completely agree re: adding the feeling of being mentally drained, or not on top of your gain. This is something I’ve really struggled with, especially in the work place. Our beloved Kim also wrote a column on brain fog, and how it is a very real thing for patients with IPF, in addition to the dizziness. Just horrible! Thanks for sharing you experience this too (although I certainly wish you, and no one else did…) but it makes me feel less alone.
      Hugs to you.
      Charlene.

      • Peter Davies says:

        Hi Charlene hope your feelin the best you can , have been following you and Kim for quite a while now am in my seventh yr with this. Now am awaiting my time on transplant list very difficult . I’m very sorry for the loss of Kim she drew you into her life it seemed as you do with your writing I have replied a few times from uk but don’t seem to get thru frustrating tried all avenues but am not a techy hope I get thru now all the best for you Pete D

        • Charlene Marshall says:

          Hi Peter,

          Thank you very much for reading my columns and getting in touch via the comments. Doing as best I can everyday, although I admit that my heart hurts much more than my lungs this week; Kim’s passing has been just devastating for our PF community. I always assumed she would thrive after getting new lungs. Thanks for sharing your thoughts, and writing to me. Sending you the very best for your transplant, and hope you can hang in there until your gift of life comes. I’ll be thinking of you and hope to hear a positive update someday soon!

          Kind regards,
          Charlene.

          • Jojo says:

            Hi Charlene
            I am new to this comment place. Not sure where or how to ask questions, so will do so here. I have had the dry hacking cough for about a year and a half or so thought from a bad cold, but it never went away and had an X-ray just a normal one I kept thinking lung cancer. My Dr advised the radiologist saw a density in my right lung and recommended a CT Thorax scan which I had with an injection by IV. That resulted in him calling me at night a couple days later and advised not cancer but a type of interstitial lung disease called pulmonary fibrosis which he advised was a serious condition, I never heard of this. He said it was in the early mild stage. He was recommending me to a specialist, which he found out could not be done in my area as only one specialist and not taking new patients but they recommended a high resolution C T Scan and full breathing tests which are now booked. I don’t know what difference there is between the ct thorax I had and this type? After reading up on this disease and waiting for these tests which I hope will be more definitive I will ask to travel out of town to Toronto or Ottawa for a specialist appointment as I live in Northwestern On. After having one ct thorax scan isbit possible that they could be wrong or is PF that easy to diagnose, any info will help. Thanks

          • Charlene Marshall says:

            Hi Jojo,

            Thanks so much for reading my columns and for reaching out. I am happy to help answer questions as best I can, although sometimes my knowledge about particular questions falls short. Nonetheless, we’re here for you! So sorry to hear about your cough that triggered all the testing which ultimately revealed pulmonary fibrosis (PF). I’d never heard of PF either, and my one piece of advice is to check out only credible websites for information. Dr. Google is not our friend 🙂 I’m glad your HRCT (high-resolution CT scan) is booked and the breathing tests; this will give you a good baseline for your doctors to start treating you from, or to understand where the disease progression is at. I’m not sure the difference between a HRCT and a thorax CT, although I suspect they may be able to see more about what is in the lung vs. just seeing something in the lung. I can’t be sure though. Toronto and Ottawa are both excellent centers! They will be able to review your tests and confirm/deny the diagnosis, as PF isn’t always easy to detect from what I understand. I don’t want to give false hope of course, but the more tests the doctors do the better they will understand if the interstitial lung disease they saw is PF. Please keep us posted- I’ll be thinking of you!

            Charlene.

          • Jojo says:

            Hi Charlene
            I left a previous post but thought I’d say I am 64 and still working full time but fatigued a lot my first post did not include this info and wonder if a biopsy should be done as well very confused and anxious about all of this. Thanks

          • Charlene Marshall says:

            Hi Jojo,

            Definitely ask your doctor about a biopsy – I didn’t have one, and I know a few folks who did but it was a tough procedure to endure. Sometimes diagnosis can be made without them, but sometimes doctors recommend them too. Your anxiety is valid, just be sure to keep track of all of your questions or concerns so you can bring them up when you see the specialist. I find that helps.

            Charlene.

  2. Sandra Hackett says:

    Thanks Charlene for sharing I learn a lot from this site about lungs fibrosis from Kim may she Rest in Peace and now you. Charlene I am getting a lot of dizziness and lightheadedness when I stand up. Have a blessed day.

    • Charlene Marshall says:

      Hi Sandra,

      Thanks so much for reading my columns and getting in touch via the comments. So sorry it is this cruel disease that brings us together, but I am thankful for the sharing and learning from one another we’re able to have. I too hope Kim is resting peacefully now and no longer struggling to breathe. Regarding your symptoms Sandra, are you on oxygen yet? I would worry that those symptoms are a side effect of your 02 being too low, something really important to talk to your physician about. Hang in there!

      Charlene.

  3. Christie Patient says:

    Hey Charlene,
    Thanks for this interesting post. Describing physical pain is so hard. My mom described many of the same feelings, but also said that it felt like she had a band around her ribs, almost like corsett. I (without lung disease) have expereinced that sensation, and breathlessness/lightheadedness during anxiety attacks, which makes me about 100 times more sympathetic to what you face. I know the symptoms of IPF tend to cause anxiety, and I imagine they are compounded during attacks. Do you have any tricks to relieve anxiety when you are really struggling? How much does your mental state affect your symptoms? No need to answer here, I know those are big questions.. just food for thought perhaps for a later column. Thinking of you lots as we mourn Kim. I know it’s been especially hard on you, and am sending much love your way.
    Christie

    • Charlene Marshall says:

      Hi Christie,

      Thanks so much for reading my columns and connecting via the comments. I really appreciate your kind words, and I completely agree – it is so hard to describe physical pain! Sometimes I’ve used the same description of your Mom, almost like something tight is wrapped around my torso, squeezing my lungs. It definitely is a very scary feeling, and I was trying to describe it to a friend recently but I don’t think I was doing a god job. I really appreciate having someone closeby when I am struggling with anxiety or breathlessness; it reduces my panic and increases feelings of comfort. I also really focus on pursed-lip breathing. Did your Mom do this? Great ideas for a later column. So glad you’re now writing for us as well Christie, I really appreciate your unique perspective. Thanks for your kind words about Kim, she is missed so much.
      Talk to you soon,
      Charlene.

  4. PAUL DUKOR says:

    I have had some doctors along the way (including some pulmonary) ask me what it feels like not getting enough oxygen while breathing. I stumbled upon an answer when I was walking with a procedure mask (everyday kind) that got wet in the rain before making it home. It became very difficult to breath through and my sats plummeted. So when a doctor asks me, I have them pull on a wet mask in the exam room for a couple of minutes. It is an aha moment for them.

    • Charlene Marshall says:

      Hi Paul,

      Thanks for getting in touch and reading my columns! Interesting that the doctors have asked you this – kudos to them, in an attempt to try and understand a bit more of what this feels like for their patients. Such a good idea to have the doctors do this with a mask, to give them a little glimpse into our daily experiences. Thank you for doing that and for sharing – a great descriptor for those who may be asked this by their doctors in future. Best wishes to you!

      Charlene.

  5. Robert Morrison says:

    Hi Charlene,
    You nailed the feeling of having IPF. Add to your comments those from Cynthia and Sandra and you have me almost completely covered. To date however, I have been fortunate that the coughing has not become a factor in my living with IPF. But having experienced an exacerbation I know that this disease can throw things our way at any time. If I had anything to add it would be difficulty with sleeping. I monitor my sats closely so I don’t think it’s a problem with oxygen, but I am not sure if my inability to get a good night’s sleep is a function of IPF or the medications I take for my IPF. Fortunately because it happens to me every night I have learned to live with it and through it. I still don’t like it but I no longer have the same anxiety I had when I first experienced it. And the silver lining is some nights I get a lot accomplished (bill paying, letter writing, etc.) which frees up more time during the day to do the things I most enjoy like reading and music. Anyway, keep writing. Your comments and those from other IPF club members give me a great deal of information and hope. Bless you all.
    Robert Morrison

    • Charlene Marshall says:

      Hi Robert,

      Thanks for reading my columns and getting in touch via the comments. Really appreciate hearing from you – although, so sorry you’re also dealing with IPF and can relate to what this cruel disease feels like. Glad the coughing isn’t a factor for you, but I completely agree how scary this disease can be in its unpredictability and how it throws us curve balls at any point. I agree about the not sleeping – have you connected with your physician about this? I actually had to start a very small dose of a medication to help me with sleeping because it wasn’t going very well for me either. I either tend not to fall asleep or wake up in the night, and being mentally tired just contributes to the physical difficulties of this disease. Kudos to you for looking at the silver lining! So glad you find our writing and comments beneficial, the PF community is a special one, I just hope some day we can all celebrate together because of a cure. Best wishes to you Robert.

      Kind regards,
      Charlene.

  6. This is different in that I take so many meds for different things that I. Experience. Like my lungs are getting tighter as the disease progresses.
    Some days are better than others. And I forget to pace myself for lack of breath. Will check in more too. But O2 levels are dropping as it progresses.
    As my IPF has been slow to spread but isn’t going to get any better. Ofev
    Seems to really stop the further progress of IPF. I hope this helps people
    Understand the hideous part of the denial you go through, like alcoholism is
    the denial part is there.

    • Charlene Marshall says:

      Hi Bill,

      So nice to hear from you, thanks for reading my columns and getting in touch via the comments. Sometimes I have a hard time deciphering whether it is the medication side effects or the disease itself causing some of the physical difficulties I experience. It’s really tough to have difficult days, isn’t it? I’m really glad the disease is progressing slowly, although I wish none of us were dealing with this cruel disease. I hope you continue to do as well as possible on the Ofev. Thanks for writing!
      Charlene.

  7. Rich lu says:

    Hi everyone. I’ve been back n forth with my symptoms. I have been scanned and pft’d and everything comes back normal. I do experience the burning in my chest numb fingers and minor lower back pain. Does anyone have voice issues? I feel like my voice is really froggy. Another is I have chest pain when urinating. Really struggling with all of this 39 with four kids.

    • Charlene Marshall says:

      Hi Rich,

      Thanks so much for reading my columns and reaching out via the comments. Although, so sorry to hear of your struggles! It doesn’t sound like you’ve been diagnosed with IPF yet, but suspect a lung condition based on the symptoms? Sometimes this disease can be hard to diagnose unfortunately. Would your doctor offer to do a high-resolution CT Scan? Usually this is what reveals the most about the lungs. I don’t have numbness in my fingers (except in the cold months of winter) and my back pain is usually up near my shoulder blades. Definitely worth investigating your symptoms though, I can imagine it to be very distressing with your kids. I don’t have the froggy voice, but others have discussed this in the PF forums, if interested, you can join here: https://pulmonaryfibrosisnews.com/forums/ Please keep us posted on how you’re doing!

      Kind regards,
      Charlene.

  8. Anne Philiben says:

    I have argued with my pulmonologist about pain to no avail. He claims there is no possibility of pain. Fortunately a cardiologist thought I might be having pain from the scar tissue from the pulmonary embolus (pulmonary doc disagrees) any way he ordered Isosorbide which I think diminishes the pain.
    The other thing with IPF is it isn’t hard to breathe like with COPD it is you aren’t getting enough oxygen. Before I was diagnosed I would tell people that I had a severe anemia once. I could tell I wasn’t getting oxygen. IPF felt the same way. No one listened to me anyway. Now I can really tell the difference and know when to check the pulse ox.

    • Charlene Marshall says:

      Hi Anne,

      Thanks for writing and sharing your thoughts with us on this topic. So sorry to hear that you’ve had to argue about pain with your pulmonologist – so disheartening to hear him say that there is no possibility of pain when he doesn’t live with the disease. Did you find the Isosorbide helped you with pain? I agree with you about knowing when we aren’t getting enough oxygen, and how it feels. While the struggle to breath isn’t there, the breathlessness sure is and the striving to get more oxygen. Thanks for helping illuminate what it feels like to have IPF, although sorry you’re going through this and had to argue with your physician. Breaks my heart!
      Charlene.

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