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    • #14954
      Marta Ribeiro
      Keymaster

      There are many symptoms associated with pulmonary fibrosis (PF), but fatigue is often cited as one of the most difficult to deal with by those living with the disease.

      Fatigue in pulmonary fibrosis goes much further than simply being tired and often can’t be remedied by a good night’s sleep. Fatigue can be so debilitating that it affects daily life, where even the simplest chores, such as getting dressed or preparing dinner, zap your energy.

      While the exact reason for fatigue in autoimmune diseases like pulmonary fibrosis is unclear, many experts feel that a lack of oxygen may contribute to the symptom, coupled with the fact that many people living with PF struggle to get quality sleep.

      Treating fatigue itself is difficult, so doctors usually try to treat what they believe to be the root cause. Often people living with pulmonary fibrosis find they have better energy levels once they begin oxygen therapy. Find out more about fatigue in pulmonary fibrosis here.

    • #15023
      Piet Potgieter
      Participant

      Next week I am going for a third sleep test in the past month and they repeat the test every time because they do not seem to be able to find out why I cannot sleep more than four hours at a time and why I am always tired. I told them I have IPF, but they insist they want to do a third test. I am not sure if their test also measures the amount of oxygen in your blood throughout the test period. On exertion my o2 levels fall to about 87%, but returns to 93 when I relax.

      • #15056

        Hi Piet,

        Thanks for sharing with us about the sleep test, although so sorry to hear you’re struggling with a good night’s sleep. I can’t imagine how tired you are after only sleeping for 4 hours at a time. That must be so frustrating for you! Was anything revealed in the first two sleep tests for you? Sometimes I wonder if this should be part of the treatment plan for IPF, as so many of us struggle with sleep for unknown reasons (aside from the pesky cough). Did they mention specifically what they’re looking for in the 3rd sleep test? Hopefully it reveals something that is helpful. My doctor put me on a very low (lowest actually) dose of a medication that is really helpful for me to fall asleep… it is Amitriptyline 10 mg. It also helps with my restless legs, although I learnt it is for depressive disorders which I don’t have. Not sure if this would help you?

        Hang in there!
        Charlene.

    • #15027
      Tom Ripke
      Participant

      I was diagnosed with IPF 2 years ago.  One of the first things my doctor did is send me in for a sleep test.  The test showed mild sleep apnea- basically only when I slept on my back.  He was insistent that I go on a CPAP machine.  It takes awhile to get used to the machine blowing air into your lungs and all the headgear holding the mask in place, but I did it and I have to say I sleep well and feel rested in the morning.  I know my breathing gets shallow and my oxygen level goes down as I sleep, but with the help of the CPAP I seem to get plenty of air.  I think I am proof that you don’t have to have a high level of apnea in order to benefit from a CPAP machine.  My doctor seems to have the attitude that a CPAP is an automatic with IPF.  I do experience fatigue as my day progresses, but not as much as before I started using the CPAP.

       

      • #15059

        Hi Tom,

        Thanks so much for sharing your experience with sleep troubles/fatigue and IPF. Interesting that your doctor immediately sent you for a sleep study to look for sleep apnea, this is good news. It’d be nice if this was something a bit more standard, as I know other patients who have fought for sleep studies being done. Glad the CPAP is working well for you, and that you wake feeling rested in the morning. Physically this must make such a difference for you! I think I will bring this up with my doctor next time I meet with him to discuss this further as I’ve never been investigated for sleep or had a sleep study done. I am on a medication that seems to help with restless legs and solid sleep through the night, however, medication isn’t always my first choice to help with things since I am on so many other meds already.

        So glad your doctor has been on top of this for you!

        Charlene.

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