May 18, 2018 at 5:17 am #12569
A common symptom of any lung disease is fatigue, and pure exhaustion. This is something that all patients living with pulmonary fibrosis (PF) can relate to, and it is one of the most frustrating things about our disease.
Regardless of having a restful nights sleep, which very few patients with PF get on a regular basis; the chronic under-oxygenation caused by this disease can leave not only our bodies feeling fatigued, but also our minds. It is very difficult to function when you’re left feeling so tired on a regular basis, and some days it seems almost impossible to carry out daily tasks such as working, socializing or running errands.
As a patient living with IPF, I thought I slept relatively well but I still wake up feeling exhausted on a regular basis. As result, I’ve recently begun questioning whether or not I am getting quality rest while I am sleeping, ie. entering the deep sleep (“REM” cycle) each night. I am looking at options to start tracking this more closely, although the only sleep tracker that I am currently aware of is the Fitbit app and I am unsure how accurate this is. I am also looking into ways that might help me improve the quality of sleep I am getting each night.
As a PF patient: do you have any tips & tricks to ensure you’re receiving quality sleep each night? Any routines that make sleeping more comfortable or restful for you? If so, please share with us!
May 18, 2018 at 10:29 am #12593Dale DarlingParticipant
I’m still working, I have had PF for at least 5 1/2 years. My job is where I can set down at a desk quite a bit when needed. I have gotten a little worse over the last 6 mo. and have a oxygen concentrator at home I use in most evening now. But what I wanted to add was that I sleep with the concentrator and usually sleep pretty well most of the time though. My wife says I stop breathing at times and you guessed it, she got me set up for a sleep study next week, can’t wait for that to happen. Anyway, I have gotten use too sleeping with oxygen at night and feel pretty rested since I do. Age 72
May 18, 2018 at 2:42 pm #12594
Thanks so much for contributing your experience to this thread. This is a topic I’d really like to hear from others about, so I appreciate the time you took in responding to me 🙂
I also remain working full-time but unfortunately it is getting to be more difficult for me, especially as I find my fatigue is increasing potentially due to poorer quality sleep. I’m glad your job allows you to sit down at your desk when needed, hopefully this enables you to continue working for a long time to come. I am also very lucky and can sit and do ‘admin’ type work when I am tired, but there are external meetings and family visits involved in my work as well and this is what is starting to tire me out sadly. Do you ever bring your concentrator to work? I lug my portable one back and forth with me each day and try to put it on in the office when I need it.
Glad to hear about the sleep study, will you let me know how it goes? My friend has PH and has recommended that anyone/everyone living with heart and lung conditions should have a sleep study done. Do you keep the oxygen on at night at just a low rate? I sleep with mine on as well, although I don’t think I’m having quality sleep, otherwise I have no idea why I am so tired when I wake up each morning. This week has been particularly bad, so I am hopeful that maybe next week will be better.
Thanks again for sharing, I look forward to hearing more from you Dale.
May 23, 2018 at 8:05 pm #12692Terry MoriartyParticipant
I resisted getting a CPAP since my first sleep study showed very few instances apnea (not sure that’s what it’s called, instances of not breathing). Several years later my pulmonologist insisted that I have the study again. Pretty much the same results, but I was sleeping so poorly, I decided to get the CPAP.
I’ve been using it for 2 years now and my sleep improved for a while. I was waking up about every hour. With the CPAP, I got 3-4 hours sleep at a time. Now I’m at about 2-3 hours sleep session.
But the unexpected result was how well I breathe when using the CPAP.some times, even though I’m awake, I just lay there and breath.
The actual test isn’t fun. They put electronic connectors all over, including your head. You’re supposed to go to sleep, but I couldn’t. They said I never went into REM sleep. The second study was more successful. Once diagnosed, you have to go through the study again to fit you for a mask.
my brother did a home sleep study. Not sure how that worked.
you should seriously consider having the sleep test.
May 24, 2018 at 8:10 pm #12719
Thanks for your reply and contributing your thoughts to this thread!
You’re right – I should actually book a sleep study, which has been suggested to me a couple of times although I just haven’t followed through yet. Not only to track my sleep and breathing patterns, but for my heart rhythms as well. Many patients who have had them say they are informative and worth having done. It is sleep apnea, the instance where you stop breathing in the night and definitely important for patients to obtain more information about.
What is it specifically about the CPAP that helps, or is different from your oxygen, do you know? I sleep with my supplemental oxygen on and don’t feel as though I wake up in the night but I still feel so unwell and not rested in the morning. CPAP would be something for me to consider if my pulmonologist agrees. I think I’ll ask him this when I am there next week…
I am so glad you’re finding relief, even if it is when you are awake in the night, by being able to breathe with the CPAP. Good suggestion for me to follow up on for sure! It feels as though I’m sleeping but again, maybe my quality of sleep is the problem and if the CPAP will help with this then I am all for giving it a try!
Thanks again for sharing 🙂
May 24, 2018 at 4:57 pm #12710Lauree KellyParticipant
I have been living with PF for about 6 years. For the first 5 years I was on disability because I also have PH, Sarcoidosis and COPD. I went back to work by God’s grace on 12/13/16 and while I do have the ability to sit all day, I am constantly talking as I work with a telecommunications giant. I am so exhausted after 8 hours of talking, then I commute home about 40 minutes and this is all getting up at 5:00am. I am raising my 7-year-old granddaughter and I am blessed to have some help with her, but she sticks to me like glue. I feel awful because I can’t get out there and play with her like I did with her mom. I fall into bed at about 8:30pm and put my non-mechanical ventilator and it does help me breathe better at night but I still toss and turn. I am blessed to have some days that I can get through the whole day without feeling worn out. I think my guilt is one of my issues because I truly do not feel completely rested. I will say that when that baby girl snuggles up with me, I drift right off. She is the right medicine.
- This reply was modified 4 years, 8 months ago by Charlene Marshall. Reason: formatting
May 24, 2018 at 8:36 pm #12727
Thanks so much for contributing to this thread, and welcome again to the PF forums! We’re glad you’re here 🙂
I can’t imagine the exhaustion you feel while living with PH, Sarcoidosis and COPD on top of PF. This must encompass your entirety on some days, so no wonder you’re exhausted after a full work day. I am exhausted, and cannot imagine how you feel. Glad you were able to go back to work in 2016 if this is something you wanted and is meaningful for you, however, I do hope you’re giving yourself some grace around this as well. Oftentimes we’re our most difficult critic, and I think you should be applauded for working full-time with everything on your plate. Speaking of that, your grand daughter sounds so lucky to have you! It says a lot when she sticks to you like glue when you get home, as you say 🙂
Hopefully some of the recent tips on improving quality of sleep might help you, as it certainly can be frustrating to be in bed “sleeping” but also tossing and turning. As a result, you don’t wake up really well rested and this is something we all need, but especially with your busy schedule.
Glad your grand daughter is the best medicine for you – and I am sure it is reciprocal. Hold onto that and know that she does this, and feels the way she does about you because of everything you do for her. Hang in there and please feel free to reach out any time.
May 27, 2018 at 8:06 pm #12773Terry MoriartyParticipant
As I understand it, the CPAP forces air into your lungs. Depending on how many apnea episodes you have a night, the CPAP is set to a higher “pressure”. Mine is pretty low, at 6. At night, I attach my oxygen to the CPAP machine. I don’t bother lowering the lpms, but I undersand that some people do.
I find with the CPAP on and laying down, I can take deeper breaths. I can feel my diaphragm expanding and contracting, which doesn’t happen with my normal, shallower breaths. If I get SOB when I doing my normal activities, I find it very hard to do pursed lip breathing to aid in recovery. It’s more like taking big gulps of breath. So, the breaths I take when wearing my CPAP are deeper and more refreshing. That’s the best way I can describe it. Hope it makes some sense.
May 27, 2018 at 8:42 pm #12779
Thanks for getting back to me, and taking the time to explain CPAP better per your understanding. That makes sense about the gentle ‘forcing’ into your lungs, especially as I visualize the mask of either a CPAP or BiPAP machine. I wondered if they were simliar, as I was put on BiPap a couple times after my exacerbation last year and it felt like forced breathing but it was the only thing that kept my saturations high enough that the doctors were happy with.
I’m so glad the CPAP helps you get a deeper breath when laying down, this would contribute to a bit more restful sleep for you I’d imagine. If your regular breathing is shallow, then it also probably helps keep your muscles strong when your diaphram does expand when the CPAP is on.
It really does make sense, thank you again for taking the time to explain it!
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