Pain and IPF: What’s the Deal?

Pain and IPF: What’s the Deal?

younger than 30

I am sure there is some underlying rule that a patient will have some type of pain when diagnosed with a chronic illness. Either that pain will come from the disease itself, or it will be a secondary symptom of it, such as inflammation, sore muscles, etc.

Until recently, I haven’t had pain since my diagnosis of idiopathic pulmonary fibrosis (IPF). But that seems to have quickly changed. Perhaps my pain is not associated at all with my lung disease, although that’s doubtful. What’s hard for me is that I cannot think of anything I have done physically that would have caused this type of pain. So, by process of elimination, I think it must be my IPF.

When the body is chronically under-oxygenated, the muscles, tendons and joints are fed less of what they need, which is oxygen-rich blood. According to my massage therapist, even bones can become weakened.

I’m sharing some of the painful symptoms I have had over the past few months, without really knowing why I’m in pain. I’m curious to hear if others living with IPF have had similar experiences. I also have included what I have done to alleviate that pain temporarily so readers can seek medical advice and try these things, too, if needed.

  • Lower back pain that shoots down into my legs. This is a new symptom that is extremely annoying. It stops me in my tracks when I lean forward to pick up something, and it hurts in my pelvis when I cough or sneeze. The main source of relief I have found for this is taking a painkiller that addresses inflammation, specifically, and applying cool packs on the primary source of the pain. I have also sought out massage therapy, as I am not a big fan of taking excess pain medication. Upon examination of the pain, my registered massage therapist discovered that I have stressed the muscle in my lower back that is responsible for twisting, bending and lifting. That is also the muscle that is the “connection hub” for my hip flexors and my glutes. Is it any wonder that I am having pain throughout my lower back and legs? She recommended an acute period of having massages regularly, so I am scheduled to see her every week for a few weeks. She also suggested I perform a pelvic tilt when things are really sore. This exercise should stretch out the muscle that is inflamed and sore, and it is something I should also be doing before I complete a movement that causes pain such as bending down or reaching to the floor. These are two methods of relief I hope will address this new pain I am experiencing.
  • Swelling and fluid retention in my feet. My physician says this is likely because of medications and not the disease itself. Nevertheless, it still causes pain and discomfort when I try to be mobile. The first attempt to alleviate this has been to put me on diuretic medication to help lose some of that built-up water. She has also recommended elevating my feet above my heart frequently for short periods. This will help alleviate the build-up of fluid in my feet, and by elevating them for only a short period of time, it won’t disperse the fluid too quickly to other regions of my body. I have also had a fluid tap in my feet where a needle is inserted to drain excess fluid. This is uncomfortable, but it is the quickest form of relief. Lastly, another medical professional suggested any of the topical icy/cold rubs, which will reduce swelling and inflammation, and hopefully alleviate pain.
  • Tight chest and back muscles from coughing. Unfortunately, a constant dry cough is a symptom of IPF,  and I don’t anticipate it will go away anytime soon. This regular motion of coughing and repeated use of these muscles is causing pain and discomfort from overuse. The only recommendation from a professional I have to alleviate this is to be mindful of my posture and where I am carrying stress in my body. We tend to carry stress in our shoulders, which then tugs the muscles of our upper back and chest upward, contributing to their soreness. When I am sitting or standing for long periods of time, I consciously try to be aware of how I hold my upper body so that these muscles that are sore from coughing can feel relaxed and open to receiving as much oxygen as possible.

Do you have any additional tips to share?


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.


  1. Al Clark says:

    Pain shooting down the legs can be caused by compressed nerve, usually near lumbar #4 or #5. I had this issue before I was diagnosed for IPF and had microdiscectomy surgery that cured it instantly.

    It recurred several years later and another surgery cured it (by this time I had already been diagnosed with IPF).

    However, I now have a pain; not shooting down the legs but right above right knee joint at back of knee and it only happens when I start walking. I don’t know if that is back related or oxygen related. I notice that walk tests for the lungs always ask if your legs hurt after the walk test.

  2. Jorgen Piene says:


    I have read your note with interest as I havn’t had any pains so far, now 1.5 years after firm diagnosis. So I wonder what oxylevel you usually have at rest and activity. and if you are on oxytherapy.

    The only discomfort I am experiencing is when I am running low on O2, it is bad but I know after some time it is back to 85+ and things start to normalize.

  3. Sandy says:

    Tips I learned from 31 days in rehab for my back. (I’ve had multiple fractures). When bending, always, always bend your legs! Go to google and ask for exercises for lower back. I have a bunch for upper and lower body with weights (mostly all while sitting) with 2 upper and 2.5 lbs lower. Also, when standing, hold in your core and when standing starts to bother you or before, sway back and forth. These all work for me and I hope you too!

  4. Sandra Bereza says:

    I have found that otc lidocain patches help with the muscle and nerve pain in the lower back and down the leg. There are several different brands but I have found the Aspercreme works quite well for me.

  5. Peg O says:

    I found that doing heel raises while seated (just raising your heel, leaving your toes on the floor) took care of foot and ankle swelling. It engages the Soleus muscles, called a “second heart.”

  6. Andre says:

    I do chi qong and Tai chi Evert day,i took a different diet,and my coughing went down 85 procent.iam 64years old from Holland and sorry About my english .and for pain medication for me THC

  7. Patty Nickolaus says:

    I’m wondering if anyone else experiences severe headaches if awakened suddenly, like by an alarm clock or sudden noise? It’s been happening to me for almost 30 years, before I was on oxygen, and doctors have no clue. If I can go back to sleep and wake up on my own, the headache is usually gone. I’ts been suggested that it may have something to do with breathing shallower when asleep, causing low oxygen and the buildup of of CO2. I’ve been on full time oxygen for several years now, but it still happens.

  8. katherine broach says:

    I used pain patches sucessfully for a few years and soon the adhesive gave me terrible rashes so I quit using them. I am 79 with many years of arthritis which i manage with tylenol arthritis. However, my 5th year since diagnosis begins soon and the pain is almost unbearable at times. I do get relief in my recliner or bed. I shared before that I have outlived the terrible cough. I hope this brings hope to someone out there. My fatigue has lessened and my air has increased amazingly since I no longer take the beta blocker Metatoprol/Toprol. I have remained at the well spectrum since diagnosis 4 years ago. I don’t take any of the IPF meds yet or require oxygen. I am blessed to be retired with grown children. My heart goes out to the young victims of this disease. God bless.

  9. Robert B. Dunlap says:

    I have been diagnosed with IPF and have been on OFEV for several months . also I have reduced my use of oxygen significantly. My heels knees and hips have been hurting. Any ideas?Thank You.

    • betty says:

      Hello Robert – I was diagnosed ipf in April 2016 – my heels hurt when I walk and I am suffering clubbing in my fingers and toes – my specialist has put me on no medication except to aid my lack of sleep – best wishes

  10. Patty says:

    I was diagnosed 6 yrs ago. Was put on oxygen 4 yrs ago during exertion and sleep and I’ve been taking OFEV now for 2 yrs. I have a lot of GI issues with nausea at times, but it decreased my coughing and I can still lead sing at my church, which I am very grateful for.
    I feel positive thoughts is what keeps me going as well as I am.

  11. Phil Callaghan says:

    Phil C,
    I am into my fifth year since the diagnosis and am on Esbriet.Over these years,I have had a variety of what I try to describe as muscle spasms,contractions,which can stop me and hold me disabled for several moments(usually in the rib cage area,back or chest.I recently talked to my respirologist about this and he put me on a drug called apo-gabapentin.I have only been on this a few days and will not know it’s effectiveness for a while,It can help in seizure like events.I will see.
    The comment section is interesting for me.Thanks.

  12. Brian says:

    Hi I’m 57 and have had an initial diagnosis 3 days ago by CT scan of IPF. Am waiting to see a specialist. I think 57 is quite young, I don’t know. I’m pretty fit and have never smoked in my life. Feeling pretty bad at the moment.

    Thanks for this website

  13. DontTakeGoodHealth4Granted says:

    I am typing this at 27 the day after my birthday. I am depressed, angry, scared and most of all in pain. Silicosis is what has potentially crippled me and by proxy PF. I dealt with fiberglass daily 24/7 in an exposed home without any mask or understanding of the dangers I could have been in. I type this to let everyone out there to make actions protect themselves from further injury, even if they never have been diagnosed or feel no pain symptoms. Had I been more informed I would have been able to make better choices, but being a youthful fool who was ignorant of what particles and scarring to the lungs can cause has made me feel the most regret in my entire short life. PROTECT YOURSELF FROM THE DANGERS OF DOING DAMAGE TO YOUR LUNGS. DO NOT END UP LIKE ME. Reach me at [email protected] if you’d like to talk. I don’t want anyone else to jeopardize their health due to ignorance. Stay safe…

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