Some Lesser-Known Side Effects of Pulmonary Fibrosis

Some Lesser-Known Side Effects of Pulmonary Fibrosis
5
(1)

younger than 30
It only takes a moment for someone to Google pulmonary fibrosis (PF)  to discover a list of unpleasant symptoms that accompany this disease. Some of the most common symptoms include shortness of breath with exertion, dry cough and fatigue. As you may imagine, there are many other diseases, or even common illnesses, that can mask these symptoms of PF. This makes the diagnosis of PF that much more difficult.

In trying to diagnosis my episodes of dyspnea over 13 months, I was misdiagnosed with asthma, chronic fatigue syndrome, bronchitis and multiple chest infections. I was treated for these accordingly, simply because my symptoms were so common to these other diseases. I don’t blame anyone for misdiagnosing me throughout the year, because who would have thought a disease like idiopathic pulmonary fibrosis (IPF) would have targeted someone at the age of 28? I sure didn’t suspect anything like a diagnosis of IPF. In fact, I consider myself lucky that it only took a little more than one year to receive my diagnosis, since the average time it takes to diagnosis this disease is approximately 26 months.

After outlining these common symptoms, I thought I would write this column about additional symptoms of IPF, and the lesser-known effects of this disease, especially because they often are more difficult to deal with since they are not as common or obvious to others. The following symptoms are my personal experience and observations from living with IPF. A medical professional does not endorse or confirm them in any way, and they do not apply to everyone with this disease.

Inability to sleep: I have yet to determine if this is a physiological or mental consequence of living with IPF. Since my diagnosis, I feel as if my mind is busy all the time, which makes getting a good night’s sleep more difficult. I know that feeling tired and general fatigue is a physiological effect of this disease, but I also wonder if I would feel less tired if I was able to sleep better. I find I wake up in the night either from coughing, feeling short of breath and as a result needing to adjust my pillows, or thinking of an upcoming appointment, test result, etc.

Cold and clubbed fingers and toes: This is one of those symptoms that will appear in the list you Google when looking up PF. Clubbed fingers and toes are a result of chronic under-oxygenation, but of these two effects, feeling cold is a lot more bothersome for me. I always have despised being cold. Now it is not uncommon for me to have to run my hands and feet under warm water to relieve the discomfort of my fingers and toes being constantly chilled.

Muscle and nerve damage: Perhaps this is not a symptom of the disease itself, but during a recent setback and hospitalization, I am now dealing with a significant reduction in muscle tone in my left foot. I was given medication via various IVs, and one was in my left foot, and “popped.” The medication leaked, causing damage to my muscle. It is a work in progress and in time may resolve itself, but it also may not. So, I am left dealing with a droopy left foot due to lack of muscle strength. I also feel as if some of the medications I recently had have caused nerve damage and tingling, although this has not yet been confirmed.

Chest and back pain: I have been told this comes from the pulmonary muscles surrounding your lungs, which are responsible for respiration. These can become sore during the expansion and contraction of the thoracic cavity in patients with IPF. Whatever the reason is, this is an unpleasant symptom of the disease, and often leaves me feeling uncomfortable and sore.

Well, there is my list of the lesser-known side effects of pulmonary fibrosis. In my experience, these symptoms are more of a nuisance than the common ones. It is my hope that this column reminds readers, especially those who love someone with IPF, that the lesser-known effects of this disease can be difficult to deal with.

I hope it also serves as a reminder to all of us living with IPF how resilient and strong each of you are for facing this disease.

***

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!
×
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!
Latest Posts
  • questions
  • questions
  • questions
  • questions

How useful was this post?

Click on a star to rate it!

Average rating 5 / 5. Vote count: 1

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

9 comments

  1. Patty Marquez says:

    Passing thru TSA at the airport my back caught their attention I have to curve line at the base of my lungs (lots of patting) of they found nothing can that be PG

  2. Ron says:

    I find myself being cold or hot depending. I don’t know if it’s the IPF or my medication. I’m on Pirfenidone (esbriet) and I think it disrupts my sleep and
    Thermostat. My mind is also active and I wake up a lot.

    • Charlene Marshall says:

      Hi Ron,

      Thanks for reading my columns and getting in touch via the comments. It is nice to hear from you, although so sorry you’re dealing with difficult temperature regulation! For the feelings of cold, I would suspect this is more likely connected to IPF as oftentimes if we’re under-oxygenated, it is common for us to be cold. However, I don’t know/suspect that case to be the same for when you’re feeling hot. Maybe it is a combination of the IPF and medication? I am on Ofev, so I don’t have any personal experience to compare with Esbriet. Are you opposed to trying a natural sleep aid, like a lavender oil (to see if it helps?) or Melatonin to help with the sleep disruption? I remember having that too and it makes coping with IPF even harder when we’re tired. Something to maybe discuss with your doctor, as our rest is really important. Hang in there and feel free to write anytime!
      Sincerely,
      Charlene.

        • Charlene Marshall says:

          Hi Donald,

          Thanks for writing, although so sorry to hear you’re also plagued with this terrible disease and the side effects that come with it. I hope you’re finding ways to alleviate those symptoms and that they aren’t too bothersome for you. Hang in there and feel free to write any time!
          Kind regards,
          Charlene.

  3. Ellen Miller says:

    Officially diagnosed with Interstial Pulmonary Fibrosis with Honeycombing almost 7 years ago after decreasing breathing during exertion. Scans have indicated little progression which is good although I’m finding it more and more difficult to walk independently and use a walker with seat indoors. No medication thus far.
    I do not share your symptoms. I love cooler weather. With temperatures above 70, with any mild exertion, I sweat from my scalp, down my neck. I have neuropathy which contributes to clumsiness and frequent damage to toes.
    Exercise is water aerobics.

    • Charlene Marshall says:

      Hi Ellen,

      Thanks so much for reading my columns and reaching out via the comments. Glad to hear your disease progression is slow, and I’ll keep my fingers crossed that it remains that way for you. It seems this disease is so different for everyone – I know many others who prefer the cooler weather like you do, and some who do not. Kudos to you for doing water aerobics for your exercise, this is so important for those of us with a lung disease. Best wishes.
      Charlene.

Leave a Comment

Your email address will not be published. Required fields are marked *