Adjusting to Pain: The Reality of Living with IPF

Adjusting to Pain: The Reality of Living with IPF

younger than 30

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.

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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.

13 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.

  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.

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