Sleep and IPF: What’s the Problem?

Sleep and IPF: What’s the Problem?

younger than 30

After reading other columns on this site, I’ve come to realize I’m not the only person with a lung disease dealing with sleep issues. After being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, I don’t recall sleep ever having been a problem until recently, in the last couple of months.

It has become nearly impossible for me to sleep through the night, and I can’t figure out why. It is really frustrating, and I know this frustration is not contributing to solving the problem. I often think about why I can’t sleep while I am trying to fall asleep. I don’t know if others reading this column have tips to share about what helps to get a good night’s sleep and feel rested, but if you do, I’d love to hear from you.

The challenges with sleep lately are not a result of my breathing, contrary to what you might think for a patient living with IPF. Of course, there are nights when I struggle to catch my breath when my pillows are not set up properly and I am laying too flat. There are also nights when my cannula falls off and I wake with a sudden jolt because I am not receiving enough supplemental oxygen, or when I find myself lying on my oxygen lines, restricting the flow.

These things tend to wake me in a panic, and my heart often feels like it is beating through my chest. So I need to do some self-talking to calm myself down enough to fall back asleep. However, the real challenges I find with my sleep lately are:

  • Bad dreams: I don’t know if this is a side effect of a medication I am on, or if it is something going on with my psyche. There have been some really scary ups and downs throughout this process, including some major medical interventions. So, some friends and I theorize that my body and brain may be responding to those times. What is startling about these dreams, which I would call nightmares, is that they are so vivid and, sadly, very violent. They are usually about someone forcing me to do something violent or someone violent coming after me and I can’t get away. When I wake up startled or upset, this does not help my shortness of breath. It bothers me that these dreams happen every night, or every other night, and I wake up very upset.
  • Body temperature changes: I can go from freezing cold to dripping with sweat in a matter of minutes. Usually this is enough to wake me up. Even though I have air conditioning, when I wake up really warm it takes me awhile to fall back asleep. Often I will get up and move to another space before I cool off enough to go back to bed.
  • Pain in muscles and joints: For other IPF sufferers out there, this likely won’t surprise you. From my dry cough or struggle to get a deep breath, I often have sore muscles throughout my back and chest. I’ve grown accustomed to this. However, the pain that often wakes me up at night is in my hips, knees, and legs. It may be restless leg syndrome or fluid retention in my lower extremities. Regardless of the cause, this pain is very unpleasant when it wakes me in the middle of the night.
  • Anxiety: Sadly, I think I am becoming more and more anxious as my disease progresses. I wrote a column last month about IPF-related anxiety, and while this doesn’t always manifest in physical symptoms, my brain feels like it is constantly running at full speed, and it takes a while to slow down. With the added things to remember since being diagnosed with IPF (medications, oxygen needs, etc.), I often find that I have to make lists and write everything down. It is not uncommon to wake out of a sound sleep, grab my phone, and add something that I suddenly remember to an electronic to-do list I have going.

To other IPF sufferers out there, do any of these things disturb your sleep on a regular basis? If so, I’d love to hear from you — we’re all in this together!

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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. Gary Ford says:

    Charlene:
    I experienced those things as well but the one thing that really helped me was being referred for a sleep apnea assessment…not fun…trying to sleep with that many electrodes on your head is impossible…but the specialist (who was a respirologist) said I didn’t have sleep apnea but wondered why I was not on any heartburn medication…so I started to take Nexium, which reduced my cough at least by 80% so I could get to sleep…my transplant team also recommended taking Zopiclone for sleeping, which I am currently weaning myself off of…and did you know that each type of organ transplant patient have their own worries/anxieties…for example lung transplant patients are anxious – always worried about choking, not being able to get your breath…whereas kidney/pancreas are angry at the world…since they are in so much pain…so relax, you are normal.
    Warmest regards and best wishes,
    Gary

    • William N Beauvais says:

      Sleep Apnea was a thorn for me,but when I learned that I have IPF my cpak became my best friend. I couple cpak and oxygen and sleep like a baby. I have sleep problems once in awhile. I also had pillow high and low problem. My wife came home with a my pillow and this has helped. When at times when I lay down I start to Cough and I take a cough syrup and quites the coughing and I sleep quite well. The Cpak does dry my nose in the am. and I drink a little lemon and water and this helps wet the tung. And spray nose with saliene water. This works for me. In the morning I do cough a lot to get the nasty mugus up. I use a simple flutter and this help a lot. My days are a lot better. A good night sleep is worth it’s weight in gold. I have at this for 4 plus years. Bill B

  2. Carolyn Lee says:

    I am 67 years old and was diagnosed in January of this year with IPF. I have been having sleeping problems and anxiety lately. Things you mentioned are familiar to me. Some days I’m up and other days down. My most troubling symptom is fatigue …..now I have all these other things popping up. Praying for you and all others dealing with this disease and for a cure!

  3. Lynne Collett says:

    The only thing I do not have in this colum is the bad dreams. But I am not going n any Medes yet except for Spiriva.

  4. Nancy says:

    I so enjoyed your light overview of your sleepless nights. I must tell you I have similar problems while catching a cat nap. ( centered prayer practice has helped rid me of my lists ) I laughed at the sight of wrapped 02 tube, pillow and me, cough cough. What a card we are given with IPF. Keep writing.

  5. MichaelBA says:

    Strange dreams I get but for the most part not bad except when ya wake n can’t seem to catch a breath. Anxiety is one biggest issues and for me zanax helps and sometimes just Good dark beer will work.The noise I make exhaling keeps me awake more than coughing does and the volume it takes to mask that internal breath most times would keep me awake as well. Laugh @ the nitemare and i’ll scream at my noise.

  6. Lorena says:

    Begore being dx with pulmonary fibrosis in August of 2017 I have been living with Rheumatoid Arthritis and side effects of cancer treatment in my 30s. I’m now 57. It’s a long story which i shll spare you except to say i have something called Lynch Syndrome which is a genetic mutation that predisposes one to several cancers. I’ve had endometrial, colon and ovarian. I’ve spent many sleepless nights over the years experiencing what you describe. My therapist ginally put me on Trazadone. It’s an antidepressant that is used for sleep. It’s an excellent drug because you take as needed, the dose can be titrated and it’s less sedating than actual sleeping pills. Sleep is so important! So just wanted to share what has worked for me. Goodluck. Lorena

  7. Sandy says:

    I have Xanax for anxiety and zolpadim for sleeping. However since I’ve had this nasty disease for two years, I’m handling the anxiety better so I haven’t taken one in a long time. The zolpadim just if I’ve had a few sleepless nights, but it seems to have regulated me into sleeping better. But when I wake up during the night, I just get up and pee and then right back to bed. No lights and no thinking helps me to go right back to sleep.

  8. Christopher Brooks says:

    I’ve had IPF for 16 months. Lately I’ve experienced dreams that highlight this malady. One featured a character I saw in Big Trouble in Little China–he could inflate himself to incredible size. He was in my car, crowded with three others, and inflated himself until I could not expand my chest at all. I woke from that and put on my bedside oximeter: 87. I accessed my cannula immediately. Another night I attended a sumo wrestling match and display. I was selected from the audience, in spite of my protestations about my fibrosis, to come to the stage. Of course, a large wrestler ended up sitting on me. I could not expand my chest at all once again. I woke and checked my oximeter: 85. Back to supplemental oxygen. I never had such dreams until recently, when my “mild case of IPF” became a “moderate, moving to serious” case of IPF. I guess such dreams will become commonplace for me.

  9. I’m 59 yrs old, and I was diagnosed with IPF in 2006. I did not follow up on any treatment for it at that time. slowly, as the yrs went by, I begin to feel the effects of my disease. December 21, 2013, I was put on oxygen. Within a month, I became totally dependant on it. Between 2013 of December and July 12,2014(when I received my Bi-lateral Lung transplant) I experienced most of the same thing as yourself. I remember waking up one night, and realizing my electricity was off, and my Concentrator alarm was going off. I also became afraid of being left alone, I feared getting panic attacks at that time. It’s been 3 1/2 yrs now, and so far, I’m tolerating my meds very well. No longer need oxygen and workout 3 times a week. O2 level is 98 at rest, 94 when working out. My advice is to do all you can to maintain what strength you have left. God bless, a former ipf patient and lung transplant survivor.

  10. Al Clark says:

    I am 58 year old male diagnosed 2009. I immediately started working out, lost a lot of weight and held off the effects of IPF until this year. coughing ramped up and I failed a walk test so am now on Oxygen when sleeping and trying to exercise. When I first was diagnosed I had anxiety (I watched my mother die of this in 1986 and am still stunned how little progress has been made on this disease since then). Since I did not go downhill until recently my anxiety level has not been high; I guess I became acclimated to the situation. Sleeping now is difficult, between the noise of the oxygen machine and almost choking myself on the tubes while I sleep I seldom get a good nights sleep. I also wake up feeling very hot; and I can almost set my watch to it at a usual 3AM wake up.

    It is encouraging to see Andrew’s success. I am on OFEV but that does not seem to help. I am currently considering stem cell treatment.

  11. Ellen Hays says:

    I was diagnosed with IPF over 7 years ago. Probably because of my lifetime of taking what life gives you and dealing with it, I continue to cope, trying to figure out what keeps me most comfortable. I, too, continue to deal with interrupted sleep for unknown causes but have found I sleep best in a cold room, with a good electric blanket on at a low setting to keep my upper body warm, and an extra blanket over my lower body. From my rear to toes I always get cold. There are times when I don’t feel my legs are cold, but throw that extra blanket over them and soon go to sleep. It’s worth a try. I have had the “sleep test” with no apnea problem and insomnia diagnosis.

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