Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient

Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient
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Exercising with a chronic lung disease is not for the faint of heart. Recall your most strenuous workout or physical activity: Your heart beats rapidly, you struggle to catch your breath, and sweat beads down your forehead. Now imagine doing that with lungs that feel stiff and painful upon inhalation.

This is the reality of living with idiopathic pulmonary fibrosis (IPF), a life-threatening lung disease characterized by progressive scarring that makes it difficult to breathe.

Since my IPF diagnosis in 2016, I’ve had a love-hate relationship with exercise. I never used to. I was very active, and played hockey, swam, and jogged regularly. However, participating in physical activity with healthy lungs is drastically different than trying to exercise with lungs that are slowly hardening. In addition to the heaviness and pain I feel upon deep inhalations, now that my lung function is drastically less than that of my peers, I also cough with exertion.

Despite no longer enjoying exercise, I know physical activity is important for patients with IPF, so I try to find ways to make it easier. There is an abundance of literature that affirms the many benefits of physical exercise for patients with lung diseases. However, doing this safely is also important.

According to the Canadian Pulmonary Fibrosis Foundation, exercise may not improve your condition, but it will strengthen your muscles and increase their ability to use oxygen. Because IPF decreases oxygenation, any activity that helps maintain oxygen levels and strengthen muscles is important.

Muscle deconditioning can also occur in patients with IPF due to immobility. Following various medical setbacks over the past year, I spent weeks in a hospital bed hardly mobile. Beginning to exercise after that was painful, embarrassing, and exhausting. I couldn’t believe how difficult it was to complete simple tasks such as walking or bending.

After that experience, I made a deal with myself that, if I could, I’d keep my muscles as strong as possible through regular exercise. But that doesn’t mean I enjoy it!

Following are tips I use to make exercise a little easier. Please note that these are tips I’ve found effective for me as a patient with IPF, and they have not been verified by a medical professional. Please consult your healthcare team before starting a new exercise regimen.

Alternate areas of the body you’re exercising

Physical activity can be painful for those with IPF. I notice my muscles are much sorer now from exercising than they ever were before IPF, particularly the next day. This is likely due to under-oxygenation, and it makes it difficult to exercise multiple days in a row.

As a result, I intentionally try to alternate the areas of the body I work on and rotate them over various days. Focusing on different areas of the body, such as legs, core, or upper body, on different days allows the muscles to rest in between.

Use an oximeter to measure oxygen

Ensuring your body gets adequate oxygen while exercising is critical. It is always recommended that you are assessed by a physician before starting a new workout regimen. Not only does a pulse oximeter help me ensure my oxygen levels remain adequate, but also visualizing the number on the device is mentally reassuring when I start to feel out of breath while exercising. It lets me know I am safe to continue.

Drink lots of water

Staying hydrated is important for anyone working out, but drinking water while exercising also helps suppress my IPF cough. Over the last few months, I’ve noticed my dry cough really flares upon exertion. This can make exercise difficult, because I have to balance rapid breathing with coughing.

Alternate positions to maintain energy reserves

I am exhausted after a workout, and my stamina for enduring lengthy periods of exercise isn’t what it used to be. Therefore, to preserve my energy while exercising, I try to alternate my positions and give different parts of my body a break.

For example, sometimes I focus on working my upper body with resistance bands, but I do this while sitting, because I have to do the leg exercises standing. Alternating positions helps me maintain my energy levels for a longer workout.

Distract yourself

I’ve recently discovered how much easier it is to walk on the treadmill while I’m watching something on TV using my AirPods. If I am distracted, I tend not to focus on how difficult the exercise is, which makes for a longer workout session.

Do you have any additional tips for making exercise easier with IPF/PF? Please share 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.

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!
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8 comments

  1. Alan Nicholson says:

    Thans for sharing. I am a 76yo male recently diagnosed with IPF. Iam in a trial for IPF meds and have good days and not so good. I know I need to exercise but my cough makes it a bit harder. I lurk on the forum..must introduce myself. Forget Australia..visit New Zealand where I live 😉
    Alan

    • Charlene Marshall says:

      Hi Alan,

      Thank you so much for reading my columns and reaching out via the comments. Sorry to hear of your recent IPF diagnosis, but I’m glad to hear you’re in a trial for the meds (this always gives me hope!) and have some good days. If you have access to a pulmonary rehabilitation program or specialist to advise you on exercise at home, there are ways to help suppress the cough. It is to everyone’s comfort though, in terms of how much they want/are able to do this. I find biking (recumbent) the easiest form of exercise to keep my cough under control.

      Do introduce yourself to the forums, we love our community there! Thanks for writing and …. I definitely want to visit New Zealand! Don’t have to ask me twice 😉 I’ll connect when I can plan a trip there!
      Char.

  2. Joseph O'Hanlon says:

    Hi Charlene and Alan,
    Like Alan, I also lurk on the forum. Both your comments are so valid. Letting us all know that it is essential to work on muscle tone to maintain respiration and O2 levels. I am 78 and had a preliminary diagnosis 7 years ago. Prior to that I had been a regular runner dropping to jogging over time. I was obliged to end my training routine last year, 15 months ago, as I could no longer give my training partner (of some 30 years) a reasonable work out.
    I then became aware that by not exercising regularly my breathing was becoming shallower. As you point out Charlene, exercise is no longer fun. Now my wife drags me out each evening for a walk around our small the town, about 2 to 3.5 miles taking 40 mins to the hour, depending on the routes we choose, and stopping to check out things of interest.
    Also, I used to do a bit of singing, visiting a local folk club on an irregular basis, and participating in the, sing around, doing a couple or three songs. Singing also a great exercise, breath control etc. All that stopped due to the arrival of the virus.
    We have been in self protection mode since February. However, we have been fortunate on the Isle of Man. Being surrounded by water, and to an extent, self governing, the restrictions applied on travel have limited the risks. Usually, one person at a time is picked up with people returning from England, or ‘essential workers’comming in.
    I will end by saying, ‘keep moving, keep optimistic, and do your best to keep smiling’. Regards, Joe O’H.

    • Charlene Marshall says:

      Hi Joe,

      So nice to hear from you! As always, thanks for reading my columns and reaching out via the comments. It’s awful to have a lung disease force us to stop doing something we enjoy, isn’t it? For you that sounds like running/jogging and for me, that was playing hockey. I still have a lot of resentment towards my body for this, but alas, that is unfortunately wasted energy. Like you, I’m noticing that without exercise my breathing is worsening so I continue to try and be active but it is hard, and not fun. Another forum member also wrote that it isn’t motivating to exercise if you don’t see tangible benefits, which is how I’m feeling these days. I continue to walk my dog, which is my motivator and I’m grateful for that. Are you able to do some swimming Joe, with being surrounded by water? I recently swam in the Pacific ocean and it was helpful to my mind, body and spirit I think!

      Take care, and thanks for writing … stay safe, and you’re right: keep moving, keep optimistic and do your best to keep moving! 🙂
      Char.

  3. Hi Charlene.

    One of the tough things about exercising when you have a progressive disease is that it can be hard to feel tangible benefits.
    I used to exercise regularly when I first felt the effects of my Fibrosis but I just wouldn’t feel any fitter. And that made it hard to be motivated.
    I was much stronger that I would have been if I wasn’t training but it felt like I was running to keep still.
    So sometimes you have to dig deep to find that motivation.

    I’m now a little over one year after my double lung transplant, and exercise is something I actually enjoy and look forward to. This has never been something I could ever imagine, even before my diagnosis. But it so amazing to exercise and then to actually feel fitter and stronger, it becomes something you crave after so long always getting worse.

    And it makes me appreciate more how tough it is to keep working out if you can’t see much in the way of progress. You might be slowing or stopping the decline but that isn’t something you can really feel in yourself, in the same way another person might feel their body strengthen or their fitness improve.

    Also, I’m sure you know that, if you are able to have a transplant in the future, being as fit as you can be at the time of surgery will make the recovery after the transplant much easier. I wasn’t very fit, I had been confined to bed for a couple of months beforehand and was only about 110lbs (I’m 6ft1in!). So recovery was a bit of a journey. I did make it, now I go running three times a week! But it might have been an easier recovery if I’d been able to be fitter going in.

    So keep going!

    If you might have a transplant in your future and you want to ask any questions about it – I’m sure you have lots of resources about the process, but I’d be happy to give you any insights if they might ever be helpful.

    All the best

    Tim

    • Charlene Marshall says:

      Hi Tim,

      Thank you so much for writing and sharing your experience with me, it means a lot! While I have access to tons of doctors and allied health care professionals to seek support from for my IPF and exercise, there is nothing like hearing from another patient. First: congratulations on your transplant! This is wonderful news, and I’m so happy to hear you are enjoying exercise again. Is there any particular form of exercise you now enjoy, Tim?

      Your words about not really feeling the tangible benefits of exercise resonate with me a lot! This is how I feel, so like you mentioned, it is hard to be motivated, especially when exercising is so exhausting with a lung disease. I really appreciate hearing from you and how its been so beneficial pre and post lung transplant to focus on exercise and nutrition! Thanks for writing and I will keep in mind your offer to reach out as transplant approaches, thank you.

      Take care and all the best with your donated gift!
      Charlene.

  4. Marice Purser says:

    Hi I am 75 years old and was diagnosed with IPF here in Australia, in March 2012. In 2013 I had a bad time with sciatica and tried many methods of trying to rectify the problem. After trying remedial massage, chiropractic treatments and physiotherapy treatments, nothing worked. Eventually I tried hydrotherapy, and wow, after about 4 pool sessions, I could feel a difference. I was given specific exercises to do, and boy what a difference it all made. I have been doing these exercises twice per week since then, and it has changed my life in many ways. It has finally dawned on me that this is probably why I am still alive. My lung capacity is now 45%, and was recently told that by this time next year I will be dependant upon oxygen. I believe that being able to exercise in water is much easier for the lungs to continue to survive and the blood circulation throughout the body to stay strong. If I am walking outside, I can last for about 10 minutes and then need about 5 minutes break to regain my breath. In the pool I very rarely loose my breath. Apart from walking in the pool both forwards and backwards, I have several other exercises to do and usually spend around 45 mins to 1 hour each time. I now feel that because I have been doing this, it has helped my lungs through this difficult time. I do hope that this information might also help others with this condition. It is worth looking into and maybe trying. One other thing which I like to share is my favourite saying. “Every little bit helps, said the old lady as she wet into the ocean”. Meanwhile good luck to everybody, and enjoy every moment of your special lives. Every little bit does help someone, somewhere, somehow.

    • Charlene Marshall says:

      Hi Marice,

      Thank you so much for reading my columns and reaching out via the comments. I hope to be back to visit your beautiful country in the next 1-2 years, I love Australia! Glad you’re finding such relief and exercise success in the water, that is wonderful. The ocean does wonders for us, and finding an ability to exercise without feeling short of breath is great. Thanks for sharing this, I would imagine it will help other readers looking for ways to get more active as well! 🙂

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