Wrestling With the Painful, Chronic Cough of Pulmonary Fibrosis
This common symptom hurts the neck, back, shoulders, chest, and throat
One of the most common symptoms of idiopathic pulmonary fibrosis (IPF) is the chronic cough. While patients may have other characteristics of a cough, such as bringing up phlegm, most of the ones I know living with this cruel and life-threatening lung disease have a cough that is dry and persistent.
Oddly enough, when I was diagnosed with IPF in April 2016, my cough wasn’t the most prevalent symptom I had to deal with. I had it sporadically throughout the 13 months it took to receive my diagnosis, which is why everyone initially thought I was dealing with a stubborn virus. During those 13 months, the most troubling symptom I dealt with was dyspnea, or shortness of breath, which was completely unexplainable for someone of my age and fitness level.
Following my diagnosis, my doctor told me I’d likely develop a chronic cough, which would worsen as my disease progressed. As a result of him saying that, I measured my disease progression against my cough throughout the years, which hasn’t been particularly helpful or accurate. Certain environmental triggers worsen my cough, such as extreme temperatures and a bacterial or viral infection. However, my cough is a lot more prevalent now than it’s ever been.
Although my cough wasn’t persistent in the early months of my IPF diagnosis, I was clearing my throat a lot, which I feared would easily annoy others around me. I still have that fear because my disease has progressed enough that I now experience coughing attacks, which are hard to stop without medical intervention.
Throughout the pandemic, I often spoke with friends in the chronic illness community, many of whom are respiratory disease patients and also deal with a chronic cough. We all shared that deep-rooted fear of coughing in public because of the looks we’d receive from others who assumed we had COVID-19. After all, supplemental oxygen use has made many respiratory illnesses invisible.
Fear of how others perceive my cough is one of the psychological worries of having a chronic respiratory condition; however, as we know, many physical issues accompany IPF as well. Others have asked me what the IPF cough feels like because they’re trying to liken their experience of having asthma or bronchitis to IPF. It’s hard to describe exactly what the chronic cough feels like, but did you know it’s painful?
Following are some ways the chronic cough can cause pain to IPF patients.
Back discomfort
As I write this column, I’m struggling to settle down the muscles in my back, which are having spasms as a result of my coughing so hard.
For me, sometimes the fibrosis in my lungs feels like an itch you can’t scratch, and the only way to alleviate that itch is to cough. This means I often have to keep coughing just to get some relief for my lungs. Unfortunately, I did that a lot today and have no doubt that I pulled a muscle in my back, despite not having a physician confirm that.
Sleep disruptions
Most of us can attest to the fact that without adequate rest and sleep, everything feels increasingly difficult. Lying flat in bed triggers a cough, so I often have to keep myself propped up at night if I want to ensure I have a decent rest. But sometimes this doesn’t work, and my cough ensues anyway.
When this happens, my sleep is disrupted, and I’m both mentally and physically exhausted and uncomfortable the following day.
Dry throat
As in my early days of living with IPF, I still have the urge to clear my throat a lot. This has become second nature to me, and I often don’t realize I’m doing it — until it’s occurring excessively, and my throat becomes dry and scratchy.
Sore neck and shoulder muscles
We use our neck, shoulders, and chest muscles when we cough, so understandably, these parts of our body can become sore and achy with overuse. Compared with coughs I had before having IPF, due to things like an infection or virus, I’d describe the IPF cough as coming from a lot deeper in your chest, which means you’re using your neck, chest, and shoulder muscles more.
It’s rare that I don’t have discomfort in my shoulders as a result of the IPF cough. It’s just become something I’ve learned to live with.
What’s your experience with the IPF chronic cough? How do you alleviate the pain and discomfort it causes? Please let us know in the comments below.
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, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Ehud Kaplan
I have had the very same experience-- the violent coughing that IPF often causes certainly hurt my muscles-- in the back, stomach, and chest. Sometimes there isn't enough time between the attacks for the muscle pain to subside, so the pain accumulates and increases. In my case, the various treatments I have tried (codeine, inhalers, etc.) have all failed, although it SEEMS that a large dose of Prednisone have reduced the severity and frequency of the couch.
Kathie Epeneter
I appreciate Prednisone too! Although the first chest pain occurred only 3 months ago, I do not yet have a pulmonologist referral. The primary care doc has prescribed 2 5 day courses of Prednisone (20) but it fails when ended. He is reluctant to prescribe it further. Dang!
Catherine
Me: "It's not COVID, it's a lung disease." And sweetly so, I'm often offered water or a cough drop from a stranger. I always carry water - EVERYWHERE, as that soothes my throat.
Heart/Chest pain, and extreme (gotta sit down) weakness due to decreased O2 after a severe coughing bout. And, yes, everything else you (Charlene) mentioned in your post; what you didn't mention, and maybe it's because you're young is bladder havoc. I now always wear panty-liners as I have very limited bladder control.
Question for you and readers: Have you noticed that coughing bouts occur 30 minutes or so after eating? We've already determined positional changes will stir the coughing demon, but eating? Talking?
Curious.
William Mattila
All who have this this disease have the same symptoms basically. Terrible way to go in life I have had this for almost twenty yrs. I have all kinds of issues. But all I have is today. That's all of us isn't it. Take it one day at a time..... William Mattila
Marylou
I have had this disease for four years. I have found a Chinese herb to help with the cough. I steep the herb Gus Lou Shi in water and make a thickish liquid. I have sips and stops the cough. There are still a few of the spastic coughing that nothing stops those. But my herbs slows it way down.
Jan Zacharias
Yes, the COUGH! I have been coughing for around five years or so. I had pneumonia or bronchitis with a cough, and the cough never left me. I'm prone to coughing fits at any time of day, although after meals it seems worse. (I also have GERD). At times the coughing chokes me, and I feel like I'm going to vomit. I also have back , neck and rib pain. My cough was dry for a long time, but now I have a constant sticky mucus in my nose and throat, and I have to spit it out or swallow it sometimes. We recently moved to a more hot, humid climate. Some days I cough much less than others. When I go to bed in my propped up bed with all my pillows, I used to always have a cough drop slowly dissolving in my mouth, and this relieved the cough enough to get to sleep. Now, with the sticky mucus mixed with cough drop, I have to get up and spit in the sink several times as I continue to cough. I still carry cough drops in my pocket so if I have an attack at the doc's or while they try to give me a PFT, I can function. I also have tried various teas, codeine cough syrup, medications, saltwater -- nothing has done any good. Distraction helps a little. So this article was particularly interesting to me. Thank you for sharing.
Clive Lugmayer
I know every word you have said Charlene. I had the cough late in 2016 and had the diagnosis May 2017. How can it be described??? 5 years into this and it seems to never end. The coughing fits have lasted 20 minutes or more and my wife can only sit by and offer anything she thinks can comfort me. And as you know there is none. Dry throat, check that box and what makes it worse is I get it sometime in the night as the oxygen (2 to 3 ltrs/hour) tends to dry out my throat. My pulmonologist told me last week that I have gone through all the medicines that might work... none of them have. Pain is ever present now, muscular and skeletal. My ribs feel broken, my muscles around my chest ache non-stop. I do get a break from the muscle pain with good dosages of naproxen sodium. I take it with the rest of my evening regiment of pills including OFEV which causes a whole set of other reactions.... trying to inhale and coughing and feeling like i can't catch my breath. I am at the point of coughing up mouthfuls of phlegm most of the time. It used to be dry, and I wish I had dry coughing again. My doctor told me I will get to a point where a tube may have to be introduced to clear the stuff. And I was given some interesting news. My left ventricle is producing 42% less pressure then it did 5 years ago. I was told it is due to the extra workload the IPF has caused. I do understand the mess my lungs are in and what they are doing to other parts of my system. All I can do is not give in to it voluntarily. Good luck you you.
Rita
Im 71 yrs old. I also have severe sjogrens, severe RA & fibromyalgia, GERDS and a whole lot of other health problems. Was officially diagnosed with PF Aug. 2022, but I'm sure I've had it way B4 that. Mine is caused by RA (rheumatoid arthritis), Sjogrens, GERDS & Methotrexate for nearly 40 years.
Since I have VERY dry mouth and nose, I use BIOTENE Gel, especially at night just B4 I get into bed and was also told to use very little K-Y jelly - in the nose (LOL). My friend had cancer, had very dry nose & used oxygen & the oncologist advised her to use K-Y Jelly - Both Biotene Gel in mouth & K-Y Jelly in nose really work well. Apparently, NOT good to use vaseline or any type of oil in nose as they cause some type of pneumonia
I think it would be helpful if people posted their age as well. I'm new to this site.
Steve Dragoo
Hi Charlene,
I can identify with many of your progressive symptoms, especially when I had that lovely acute exacerbation 2 years ago - which took over a year to get to 80% recovered. Didn't eat for weeks, couldn't shave or brush my teeth - too weak, tore rib cartilage - been there with cracked ribs that just added to the fun, though.
I'm just saying this not for attention to me but to ensure you that you are not alone, friend. The 3 sustaining things that have helped me the most are:
1.) my relationship with God (did you see what the James Webb Telescope published a couple of weeks ago - that the big bang is questionable). Gently I added my response to them, it was that millions and millions of people around the planet have known that for a long time. I was the most secular person on earth chasing the dollars enjoying the big life - rental properties, expensive vehicles, 11 different bank/investment accounts - blah, blah, blah...
2.) My wife - she literally worked with our son, borrowing money, frantically touring the city to find anything that could help - larger O2 bottles and eventually a concentrator. I could not sit up in bed without running out of breath. More than once I almost panicked before she could find O2 because I could not breathe, fortunately even in my mental fog I knew if I tried to run away it would get far worse - far worse. Our sister-in-law is a head nurse at a local hospital and helped where she could. Her family loaned us the money and I did all I could to immediately pay it back - took 4 or 5 months.
3.) Supplements - I have mentioned them before so I am very hesitant to say much here but that they have helped - significantly.
Since I am in sales and frequently on the front lines (I have the slash marks to prove it), I remind myself of this phrase: "What other people think of me is none of my business." There is a second part to that and it is I cannot look backwards at my life through your (anyone's) eyes. May sound a little cynical but you know I love people and am generally never harsh.
Let's talk...
Steve
Kristine E Miller-Pinti
I've had similar experiences. I coughed so much I cracked 7 ribs over 6-8 mos, and then had to grab my side when coughing to control pain. My son asked when I was going to quit coughing and I replied, "when I'm dead". I had a single lung transplant and still cough, but not as much. Pulmonary says it is either from the diseased remaining lung, GERD or postnasal drip from allergies. I have never found any med that was helpful. Cough drops seem to work as well as anything. One study from Australia recently tested a med that patients in the study found helpful for cough and even asked to continue the med after the study, so maybe there will be help down the road.
Alan Jones
I to have a chronic cough with Pulmonary Fibrosis .It is so hard to deal with.
I am taking Prednisone they haven’t really helped .Looks like something you have to put up with .
Elle Martins
Hi Ehud, I have the same symptoms as you do. I remember when I would only get a bad cough attack once a month, then it went to every two weeks, to every week now it's every other day. I literally have to sleep with 6 pillows behind me. So, yes I sleep when I am able to sleep almost sitting down completely. The pain in my back is horrible and when my cough begins which it begins at 3 P.M and will NOT stop until 6 in the morning the next day. But what did help me was promethazine Dm and Tylenol #3 with codeine Inhalers do not work for me anymore and neither does the Nebulizer. So, I basically start crying bc I have completely helpless and hopeless. Prednisone did NOT work for me because I would get rashes and got extremely nauseous I did the Methlyprednisone but that didn't work bc I have high blood pressure. So, obviously, I am not getting any medical care. I tried calling my Insurance multiple times and nobody seems willing to help me..