Adjusting to Pain: The Reality of Living with IPF

Adjusting to Pain: The Reality of Living with IPF
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As I sit down to write this column, I am consciously aware of, and thinking specifically about, where I feel pain in my body. Right now, both of my calves are sore. They feel as if the muscles are wound tightly around one another. My right forearm is aching, my hips are a bit sore, and I have both stiffness and muscular pain throughout my lower to upper back, throughout my shoulders, and across the front of my chest. I also have a slight headache behind my eyes, and my stomach is pretty upset from a new antibiotic I am on as a result of a bacterial infection.

For those of you reading this who are also living with idiopathic pulmonary fibrosis (IPF), the idea of living with pain every day and adjusting to how it impacts your daily life will not be new to you, I’m sure.

Many people don’t understand how a lung disease, such as IPF, can manifest into pain for the people living with it. I have to admit, at first I was one of those people. About six months after my diagnosis, my doctor offered me regular pain medications and I politely declined, which seemed to surprise her. At that time however, I wasn’t in pain regularly and usually just felt discomfort or pain when I caught a cold and was coughing more than normal.

Since then, things have changed dramatically for me. I regularly have pain now, often in the form of muscle pain, joint discomfort, or a sore back and chest from my dry cough. I recently had a cold and pulled muscles in my back from coughing so hard while trying to clear my throat and get enough oxygen.

The pain I am feeling now likely is a result of that. But I frequently feel pain in my back and chest. I know from speaking with others that they can relate to this as well. I try to alleviate the pain by using natural products or with gentle exercise. I really don’t want to take additional medications for pain, although sometimes I have to in order to get some relief.

If you’re an IPF patient, do you have any gentle, noninvasive techniques or exercises that have helped alleviate your pain?

In addition to being a giant pain in the butt (pun intended), pain has also been a nuisance in my life for many other reasons. Some of these include:

  • Everyone jokes with me now that I am the family or workplace weather woman! This is because I have paid close attention to the weather since my IPF began to worsen. Specifically, I look at the temperatures and whether the day is expected to be hot or cold. Both of these impact my breathing. If my breathing is rapid because it’s too cold, I often find my chest is tight and become wheezy with a more intense dry cough. That cough then leads to using my pulmonary muscles more, and I become sore throughout my back and chest. If it’s too hot, I find I struggle to get a deep breath in, and trying to gasp deeper also creates a cough and overuses the muscles in my chest. It is important for me to gauge my daily activities based on the weather. I also check to see if rain is in the forecast. I have yet to really confirm this, but it seems that soppy, wet, or damp conditions cause me additional muscular and joint discomfort. These weather conditions are all important factors for me to consider when I am thinking about and preparing for my day.
  • Canceling plans if my pain is too difficult to manage with regular pain medications. Often if my pain is really bad, I have prescribed medication to help alleviate it, and when I take these pills, there are certain things I cannot do safely. If part of my evening includes driving to spend time with friends, and I need my prescribed pain medication to cope with the discomfort, then I can’t operate a motor vehicle safely and often our plans need to be changed or canceled.
  • Pain can certainly interfere with pulmonary rehabilitation goals! This one is pretty easy to understand: You can’t exercise well if you’re in pain. My exercise is often hindered or changed if I’m having muscular pain or joint discomfort and it impacts my overall goal, including the length of time to achieve that goal for my pulmonary rehabilitation.

If you are a caregiver or friend of someone living with IPF, please don’t underestimate the pain your loved one can be in. Adjusting to the pain just seems part of our lives now, and we appreciate all the patience we can get when trying to cope with painful days.

***

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.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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40 comments

  1. Kathey says:

    I have had pain in my chest and back for about 2 yrs prior to my diagnosis , could that have and and is it related to the IPF ?
    I do not have a cough as of yet but I have poor diffusion capacity .
    Thanks
    Kathey

  2. Marion Van Winkle says:

    I have an in-house massage weekly, which helps alleviate pain, especially in the muscles. It keeps me more flexible, too. I do some yoga positions for the same reason. It all helps, because I sit too much.

  3. katherine broach says:

    i regularly use tylenol 650 mgs and take 2 once or twice a day for joint pain from arthritis which is worse with IPF. Damp days are as if I have a built in barometer. A hot soak would help but at 79, i’m confined to a seat in the shower.

  4. Adjusting to the pain is a strange one that I think some medical professionals don’t take as seriously as others. Accepting the diagnosis in itself is a huge task but having to find ways in which to manage everyday pain is a momentous hurdle. I’m glad you’ve found ways in which to monitor your pain, and I remember all too well how changes in weather conditions can have a huge ramification on how well a person can breathe when they have lung damage. I also found using essential oils as a sensory aversion helped, particularly lavender oils when feeling unsettled and in discomfort xx

  5. I have constant dry cough burning, swollen forearms legs and joints. Breathless minimum activity, chest pains and back. Upset tummy and cld& hot fevers.even travelling short distance cause chest pains and tight chest. Was diagnosed in 2014 with IPF and resistant lupes. Feeling very frustrated.

    • Charlene Marshall says:

      Hi Dulecia,

      Thank you for reading my columns, and I am so sorry to hear about your pain and discomfort. The dry cough and sore joints is certainly something that resonates with me. It is so scary to feel like you cannot breathe, even when you are doing minimal activity or travelling short distances, as you say. Do you use supplemental oxygen yet? This might help you significantly, but I know your doctor will inform you when you need the oxygen. Hang in there, feeling frustrated is very normal although I wish none of us felt this way. Channel that frustration into the initiation of your support group of yours, and know that you are doing such a good thing!

      Warm regards,
      Charlene.

  6. gcvoon says:

    I would suggest to have an early and evening walk in the park to improve your lung disease of lung fibrosis. Pain killer and antibiotic would be able to improve the situation but to deteriorate your health. My father having the same problem which I see from his chest xray and his symptom most likely to suffer from this lung disease. His healthcare doctor just keep on prescribe various pain killer and antibiotic, both heavy dose,500mg in addition to the beta blocker medicine. My father didn’t inform his health problem to me but to cry to me at the last moment. I try all my best I can do to save his life but he still passed away last year at age 81. It seems most of his organs been damaged by the medication he took. He passed away in June last year and I am still very sad today. Avoid medication if that is possible.

    • gcvoon says:

      Sorry for the typing error, it should be the pain killer and antibiotic WOULD NOT BE able to improve the situation….

    • Charlene Marshall says:

      Hi Gcvoon,

      Thank you for sharing your experience with us and I am very sorry to hear of your Dad’s passing. What a difficult situation for you!
      I know each person has a unique experience with traditional (medications) vs. non-traditional (more natural remedies) ways to treat this disease, and I am sorry the medication route couldn’t save your Dad. Some people find it very beneficial, but it never hurts to remind folks about the non-traditional options too such as walks and maintaing good health. Thanks for sharing your experience and wishing you and your Dad some peace.
      Kind regards,
      Charlene.

  7. Brian Burgess says:

    Good to hear your thoughts and comments. Since being told I had early IPF the aftercare ( even psychological ) support has been zero. I was not even given the result if a lung function test! Just a no hope life ending desease and no advice.

    • Charlene Marshall says:

      Hi Brian,

      Thanks for reading my columns, and for getting in touch, although I am so sorry to hear of your IPF diagnosis. This is such a cruel disease isn’t it? Hopefully your friends and family will step up to help you with the psychological support as this is such an important part of coping with this disease. It can be so overwhelming at times! Can you call your primary physician or pulmonologist to find out information about your lung function test results? This is really important to establish a baseline in terms of how your IPF progresses. Sometimes they forget to call us, and we have to call them. Hang in there, and feel free to join our online forums at: https://pulmonaryfibrosisnews.com/forums/ … this is a free website, and it is filled with lots of wonderful people who truly “get it” when living with IPF. Best wishes to you!

      Kind regards,
      Charlene.

    • Maria says:

      Brian, this disease is so hard to go through. I too have no really support either. I was diagnosed last yrs and my dr never mentioned forms of treatment. My pain & muscle soreness just started getting bad about 3wks ago. Have an appointment in 2 days so will mention pain meds & other treatments. God bless you sir.😧

  8. Rita Skinner says:

    Dear Charlene:

    It is a cruel disease isn’t it? It truly has no mercy. Once the barometer goes up, you know you’re in trouble. A beautiful dry 70 degree day is the best for me. I live in PA and whether changes quickly. A few years ago, I decided to alleviate all DAIRY from my diet. Dairy promotes inflammation, which in turn affects your joints, etc.

    It have made a big difference in my diet, plus I needed to drop as much weight as possible to be within range for the transplant list. I have lost 70 lbs and still have about 30 more to go. The back and chest pain will be there no matter what from coughing. And it is so unbearable at times. My husband gives me back rubs which really helps calm the coughing. I don’t want to take pills if I don’t have to. I do take some Alieve if I feel really bad, but thats it. Hope this helps.

    Rita

    • Charlene Marshall says:

      Hi Rita,

      Thank you so much for writing and for your kind words after reading my column. It sure is a cruel disease, very unfair and shows no mercy based on age, class, etc. So many other factors also contribute to its ‘acting up’, including weather (as you say), humidity, air quality, etc…. so much that is out of our control!

      Wow, kudos to you for making such a change in your health which clearly is paying off. 70lbs is amazing, and you must feel like a completely different person! I’ll maybe give this a dry, the dropping dairy, although I absolutely love cheese. That said, I know there are dairy free cheese options too so that shouldn’t be an excuse, should it? 😉

      Thanks so much for sharing this with me, it indeed is helpful!
      Warm regards,
      Charlene.

  9. Frances says:

    My lower back is so bad I feel like someone brook it.my breathing has gotten worse oxygen does not help any more when ever I walk my oxygen drops down to 70 I know there is nothing they can do for IPF but pray 🙏

    • Charlene Marshall says:

      Hi Frances,

      Thank you for reading my columns and getting in touch via the comments. That said, so sorry to hear you’re dealing with pain! It is awful, and exhausting isn’t it? I do hope praying remains a source of comfort for you throughout this terrible journey. I also hope you’re open to exploring pain medications if they are offered to you, hopefully to reduce your pain a little bit. Thinking of you and hoping you can find some comfort soon.

      Regards,
      Charlene.

  10. Lisbeth says:

    Hello, my dad has IPF and it definitely has taken a toll on him. My heart goes out to anyone with this horrible disease. Has anyone had pain in the shoulder blade and neck with ipf? The doctor prescribed Valium and I am not sure if this really helps him. I do not like him on these meds because it makes him sleepy.

    • Charlene Marshall says:

      Hi Lisbeth,

      Thank you for reading my columns and reaching out via the comments. So sorry to hear of your Dad’s IPF diagnosis – this disease sure is unfair and cruel, isn’t it? Sometimes I get pain in my upper shoulders and neck from coughing, or when I feel like my muscles are tight and breathing is tough. Does your Dad have it sporadically or is it usually in response to something? Sorry to hear the Valium is making him so sleepy. Maybe his physician can either change the drug itself, or the dose to help eliminate that unpleasant side effect? Hang in there and feel free to write anytime.
      Warm regards,
      Charlene.

    • Johnnie says:

      I have had a terrible dry cough for about 8 years, but never was told anything except I was told I may be allergic to things brought in on barges in the bay area I have just been told by a pulmonary doctor that I probably have pulmonary fibrosis. I have always been healthy, never smoked or drink alcohol. He is running amass of test to see what the underlying cause may be.NO CURE. I too have extreme back pain in my upper back and especially in my left shoulder blade. It is so distressing. My husband was diagnosed with RA about 3 years ago, and I hated so bad to let him know of my diagnosis. I have known for about 2 weeks but didn’t share it
      He was very upset that I didn’t tell him and more so just I have the disease. We are very close and share a truly loving relationship. When God said you become one when you are married. We truly are. At night we sleep what I was told is spoon fashion. We ate always in a position of being together. I appreciate finding your web site and thank you so very much for sharing, because I had no idea why all of a sudden I am having so much pain in my upper back neck, and especially in my left shoulder blade. We ate trusting that God will give all of us a healing, including my husband. God is here for us and can do what no other can

      • Charlene Marshall says:

        Hi Johnnie,

        Thanks so much for reading my columns and getting in touch via the comments. I’m so sorry you’re enduring the testing to know if you have PF or not. While it is very scary – know that many of us are here to support you if you do that this disease. Feel free to reach out any time as your tests emerge what you are dealing with, and I will be thinking of you. I am so glad you have your husband there! Loving, supportive care is what all of us need. Connect anytime.
        Charlene.

      • Johnnie says:

        Hi Charlene, I got my bloodwork testing back and my RA Factor is very high. It is 104.3. My doctor wants me to see a Rheumatologist. The report also says I have Moderate suppleural honeycombing is pres in predominantly a basal distribution. Associated traction bronchiectasisis present. The finding have progressed since the lung base images of the CT of 2/11/2016. It says the finding are consistent with moderate usual interstitial pneumonia. This is so hard to believe, buy I know others also ha e difficulty believing things they too have had to confront. It was such a shock to me and my husband that I too have RA. I read you can get this from exposure to mold. Of course there are other thing that can cause it. Thank you so much for being there for all of us to share our sorrows and pain. We are not giving up however, we know God has the final say. I will keep praying for all who are suffering and myself also. May God bless and be with each and everyone of you

        • Charlene Marshall says:

          Hi Johnnie,

          Thanks so much for reading my columns and connecting via the comments. So sorry to hear this update – you’re very right, the shock value and upset when being newly diagnosed can be really overwhelming. Be gentle with yourself and rely on your faith as that sounds like it really helps you. As hard as it is, try not to read too much online and only look at credible sources of information. A friend’s Mom was actually diagnosed with UIP two years ago, declined really quickly and was told to get her affairs in order. She saw the transplant team here but made an incredible “recovery” – I use quotes because she isn’t free of the illness but she is off oxygen and living a much more quality-focused life. Hang in there, and feel free to reach out any time… we are here for you! I’d also recommend joining the PF News forums, there are some wonderful people on that site as well. I hope your appointment goes well with the Rheumatologist. Keep us posted on how you’re doing. Thinking of you!
          Charlene

          • Charlene Marshall says:

            Hi Carol,

            Thanks for reading my column and reaching out via the comments. Are you seeking information on what I’m doing, just for clarity? Let me know if so and I’ll happily respond. I’m not free of pain but can say I’ve learnt some strategies to help manage it.
            Sincerely,
            Char.

          • Carol says:

            Hi Char I was actually referring to this statement
            friend’s Mom was actually diagnosed with UIP two years ago, declined really quickly and was told to get her affairs in order. She saw the transplant team here but made an incredible “recovery” – I use quotes because she isn’t free of the illness but she is off oxygen and living a much more quality-focused life.
            I was wondering what she was taking or doing for such an incredible turnaround

          • Charlene Marshall says:

            Hi Carol,

            Oh! Really great question – so sorry I’d lose the correspondence thread on that comment. I know exactly the person you’re referring to, it is my friend’s Mom. I can connect with her for an update if you’d like? I’m not sure if they actually had the diagnosis of UIP wrong in the end, or whether it was triggered by a virus/infection to make it flare up. She was really sick a few years back and now is off 02 and doing very well. I haven’t followed up with her in awhile but still have contact with her on social media so I can ask. It sounds like her disease might have just stabilized, or was triggered by some inflammatory response. Let me know and I’d be happy to ask my friend’s Mom and copy/paste her reply verbatim if you’d like. She’s a lovely woman and a very knowledgeable retired nurse!
            Char.

    • Sharon Smith says:

      I was told I have IPF February 2019. I also have recent pain in my shoulder blade. I did not know it was connected to IPF. I take Tylonal and ice pack. I am in a lung study with new medicine with no side effects. First breathing test was at 53% next went up to 65% but the third test went back to 60%. I had been sick with a lot of acid reflux. I have read that 90% of people with IPF also have GERD/acid reflux. Lots of info on these pages. Thank you all.

      • Charlene Marshall says:

        Hi Sharon,

        Thank you for reading my column and reaching out via the comments. Sorry to hear of your IPF diagnosis last year, and the subsequent pain you’re dealing with. It feels so unfair to be facing IPF and also having to deal with pain; although, I find the connections are hard to make sometimes. I hope the Tylenol and ice packs are helping, along with the new medicine from the study. Is it a pain medicine or one to help lung function? It sounds like the latter, as I am happy to hear your function has ultimately gone up. Take good care, and thanks for connecting. Charlene.

        • Sharon Smith says:

          The meds that I’m taking are for IPF. Recently my primary prescribed muscle relaxers for my shoulder blade pain. I’m waiting for them to arrive now sitting on ice pack which seems to help.

          • Charlene Marshall says:

            Hi Sharon,

            Thanks so much for reading my columns, and for reaching out via the comments. Sorry to hear you’re dealing with pain requiring muscle relaxers, that is never easy. Is the pain from the cough do you think? Glad the ice pack helps, I find cold or hot topical rub helps as well if you wanted to give that a try in the interim. Wishing you free of pain!
            Charlene.

    • Sharon Smith says:

      I have the shoulder pain also. Waiting on muscle relaxer meds to be delivered. I use ice packs and a message. This seems to help.

  11. Dee Mack says:

    Hello Everyone
    I have had a life of autoimmune disease based illness plus IPF and cancer. At 70 I am damned if all of this is going to drag me down. I have purchased an adjustable bed which helps with the muscle and joint pain enormously at night. I also use a Dyson air purifier/fan, walk as much as I can and sit upright – no slouching. Another element managing the whole disaster is keeping a clear mind – prednisone notwithstanding- and do as much educational research as possible. New approaches are being developed all the time from reputable sources. I’ve also become a scientific research buddy in ILD which is stimulating and makes me look beyond myself. All of this deflects from my pain particularly in my lower lungs. Hopefully there will be a cure in our lifetime.
    Carpe diem!
    Cheers
    Dee

    • Charlene Marshall says:

      Hi Dee,

      Many thanks for reading my columns and getting in touch via the comments. So sorry to hear of your experience with autoimmune illnesses, cancer and IPF – that certainly seems unfair, but I am impressed with your positive attitude. Really happy to hear the adjustable bed helps with pain, that is a tip many of us can use I believe. Researching and finding solutions to help ourselves amidst the horror of this disease certainly can be helpful. Really glad you’ve made use of this, and I’m with you: hoping a cure is found in our lifetime!
      Kindest regards,
      Charlene.

  12. Gary christie says:

    Diagnosed 3 years ago although I suspect it has been there quite a bit longer, 65 working man blue collar so no stranger to injuries and pain, getting it now in my lower left ribcage to point of all consuming. Time to see a doc again, I fear this as I guess it’s just the beginning

    • Charlene Marshall says:

      Hi Gary,

      Thanks so much for reading my columns and reaching out via the comments. That said, really sorry to hear you are also dealing with this cruel disease — it often has no mercy. I hope you get some relief and/or answers when you see a doc about pain. If it is sudden, really sharp or intense with no relief, I’d recommend seeing someone soon. This can be an acute issue that needs attention right away. Hang in there!
      Char.

  13. Jackie Kalina says:

    Recently diagnosed with IPF. Have GERD also. Doctor said it was mild and to come back in two months. I am researching on my own. Dr didn’t say much other than 3-5 years before terminal. I am a healthy (or I thought I was) female who walks every day. Now getting chest pains, headaches, sore joints. I am still going through tests, but are most doctors more informative or do I do this on my own? Thanks Jackie

    • Charlene Marshall says:

      Hi Jackie,

      Thanks so much for reading my columns and reaching out via the comments. I’m sorry to hear about your IPF diagnosis, but glad you found this site and hopefully the forums as well (https://pulmonaryfibrosisnews.com/forums/ ) as there are some great people and other patients who can share some of their experience with you too, especially around GERD and IPF. The 3-5 year lifespan is scary, but that research and thus, prognosis is actually outdated and I know many people who are far beyond those years now with this disease (10+). I often say “google is not our friend when it comes to information”, so do make sure you’re checking credible sites like the Pulmonary Fibrosis Foundation (PFF). The headaches and sore joints might be from low oxygen, did the doc do a 6 minute walk test with you? This is important to make sure your body is getting enough 02 so push for that if you can, sometimes that is left out unintentionally. It may also be one of the tests you’re still enduring too. Remember you can always seek out other doctor’s too, check out the Centers of Excellence in PF on the PFF website and see if you can be seen in any of them that are close to where you live. Not sure if this is helpful? Do feel free to write us any time and we’d love to have you join the forums!
      Charlene.

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