This topic has 15 replies, 5 voices, and was last updated 1 year, 9 months ago by Charlene Marshall.

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    • #10999

      Hi Everyone,

      Dealing with fatigue is inevitable for PF patients since we are chronically under-oxygenated, so I know this should be expected or anticipated as the disease progresses. I wanted to ask this forum: how do you combat the fatigue? Do you have any tips that are particularly helpful for you? While naps are likely the most important way to address fatigue, they aren’t always realistic, especially with a career still intact. I have also heard of daytime napping needs to be only a certain length of time for them to be beneficial vs. harmful (harmful meaning, they could impact your sleep at night). Also, naps are helpful in alleviating physical fatigue but there is also mental and emotional fatigue as well that comes with PF. I have written about some of the different types of fatigue that I am feeling lately in my column here:

      Does anyone have any tips to share on dealing with the many ways a PF patient might feel fatigued?

      Thanks in advance.

    • #11008

      Other than resting, what helps me are breathing exercises I learned while attending Mindfulness classes.  If nothing else, it calms me and that in of itself helps breathing.



      • #11017

        Thanks Gil, I also find deep breathing and mindfulness exercises helpful. Do you still attend the mindfulness classes? Are they offered through your treatment center?

        The other thing that often helps alleviate my fatigue is massage therapy. It sounds strange, because getting a massage makes me even more tired but when I go to sleep after a massage, I actually wake up feeling more rested and alert. Therefore, I can only get a massage at the end of the day or on a weekend where I can just crawl into bed after, but for some reason I do sleep a lot better after a massage and feel less fatigued when I awake in the morning. Have you ever considered massage therapy for rest and relaxation, Gil?


    • #11022


      Yes! I had someone who was great, she moved, but one of these days I’ll find someone who not only gives a great massage but will come to my apartment and give me one before I go to sleep.  Yes, after a massage I just want to sleep and having to get up and go home is the only thing I don’t like.  I just added a home massage to my would-like-maybe Bucket List.

      As for fatigue, the best is preventive medicine such as walks and other exercises.  Sometimes, the only cure is to rest.  Last Wednesday  night, Jan 31,  we returned from watching the Lunar Eclipse, it was a 500 mile trip and it took four days to recover, I am still recovering and it would have been worse if I had been the driver.  So getting a friend who is willing to drive will also help inhibit fatigue.

      I often take short trip, 20 miles or so, but since I am photographing fowl and birds, the trip will last hours. I have learned that if I take frequent breaks then I will be less tired when I get home.

      One of my doctors recommended C0Q10, it seems to help or at least it gives the illusion of more energy.  A Native American Indian  recommended prickly pear juice and that sure seems to help reduce overall fatigue, besides, it has other health properties.  When I am gun ho I will also prepare cactus for salad or for a juice blend, once in while I may prepare  it as part of a meal.

      My most frequent remedy is resting.

      • #11046

        Hi Gil,

        Oh that is one way to increase my level of comfort following a massage – to have my RMT come to me. That is a great idea! She is lovely and I am confident she would do this. I agree, I dislike getting up and dressed, and going in the cold to go home after a massage. I do find massages so relaxing that I often fall asleep on the table and as I mentioned, definitely sleep better at night where I wake up the next morning feeling much less fatigued.

        Thanks for sharing your experience of your road trip from watching the Lunar Eclipse as well, as this is one of my biggest fears: taking such a long time to recover from a trip. I used to bounce from one thing to the next so quickly, and now I find I need time in between to rest and recoup. I’m currently planning a trip to the UK in the fall and don’t want to build in ‘rest time’ as there will be so much to see in only two weeks but I am thinking that it is inevitable that I’ll have to do this.

        What is C0Q10? Is it a supplement? I have been incorporating a lot of juicing into my diet as I got a juicer for Christmas and I find fresh orange, pineapple, mango or any citrus juice really helps get me going in the morning. I’ve never heard of prickly pear juice! Sounds like something you’d find on the Disney movie The Jungle Book 🙂 … would like to try that sometime.

        Thanks, as always for sharing Gil!

    • #11023
       Dick Logan

      My best remedy continues to be controlled napping.  Being retired I have that added luxury.  I do try and either walk or do a recumbent bike most days.

      • #11047

        Hi Dick,

        Thanks so much for sharing and joining us in this discussion topic! I hear many people still find the best remedy for fatigue is napping, and I do think I need to work harder in building this in whenever I can (ie. on weekends when I am not working).  Do you find doing your exercises easier first thing in the morning or at night, before bed, or do you have a preference? I try to walk on my treadmill as often as I can and try to watch an episode of my favourite show while walking. I just haven’t figured out when in my day is the most optimal in terms of not being too tired to want to do this, it is a work in progress for me 🙂

    • #11025

      Coffee helps, fresh ground, strong and sweet with cream.   I suppose it’s one of those guilty pleasures that will coax me to get out of bed 🙂

      Lots of times I force myself out of bed because I know once I get moving I’ll be OK.  I pray, I self-talk, and sometimes it takes a while but I manage.  Often times once I get up I’m good.

      But yeah, some of dealing with this is realizing fatigue is one of the things we live with.   Exercise, eating right, taking meds will only go so far and as Dick Logan said a good remedy is often a nap.

      • #11048

        I also am a coffee lover Alex, and I think this is what gets me out of bed in the morning too! It is definitely a guilty pleasure 🙂

        Have you ever been told by your Doctor about whether or not caffeine impacts this disease in any way? I don’t drink any soda, haven’t really ever, so the only type of caffeine I really get is in my coffee and usually I just have 1 per day, but sometimes I’ll have two.

        Another thing that a patient I know from the treatment facility where my medical team is, has said that increasing her water intake has actually helped her feel less tired too. She said it not only helps with her physical fatigue (especially keeping her joints from feeling stiff and sore), but she said it also helps with her mental clarity, so she doesn’t feel as ‘foggy’ or fatigued mentally with an increase in water intake. Something easy enough to try, so I think I’m going to see if this helps.


    • #11029


      “Lots of times I force myself out of bed because I know once I get moving I’ll be OK.”

      Yep, that’s me too.

    • #11124
       Lisa Neal

      I also bave the luxury of napping. My sleep at night is not good. I am up and down all night. I really like the idea of getting a massage. Someone had suggested that to me a while back. We also have a place that you go and workout with toning tables. They actually do the work for you but it does stretch and work out your body and I have been told to try that also. I am trying to consume more water as well. I rarely drive because I have passing out episodes when transitioning  from sitting straight to standing up. It is much better and I have not passed out in months. If I stand still for a few minutes and let the sensation leave then I am good. It usually only happens if I have been riding in a car more than 30 minutes. At the moment I need the buddy system just in case I get that sensation. Months of steroids is the reason for my problem but as I said I am much better and my mind is wanting to get moving with exercise or something because I know that will help me sleep better at night. Thanks for letting me join in your discussion.

      • #11285


        Your question:

        Have you ever been told by your Doctor about whether or not caffeine impacts this disease in any way?

        Yes.  As you may know GERD is often found in people with PF, usually the GERD develops first.  I’ve had GERD since my 30’s.  One theory I’ve heard is that acid reflux finds it’s way into the lungs causing damage/irritation and after a while causes PF.  That is just a theory, and the pulmonologist that I initially saw for my PF didn’t accept it as scientific fact he thought it was a good idea to suppress/treat GERD very aggressively.  Much of the treatment for GERD is accomplished with meds but diet plays a role, some of the suggested foods to avoid:  chocolate, caffeine, spicy food, citrus – especially juices, alcohol,  and tomatoes.  I gave up caffeinated coffee for 3-4 months.  Horrible, just horrible.  I still enjoy 1 nice large cup of coffee every morning and that’s as good as I’m going to get in the “avoid” caffeine department.

        • #11292

          Hi Alex,

          Thanks so much for your reply and sharing your thoughts with us.

          This is really interesting re: the caffeine and GERD. I often wondered whether or not caffeine might trigger GERD or heartburn due to the acid in coffee (I think it has a lot in it anyway?), although thankfully this isn’t something I struggle with very often. I have friends that do though, who don’t have PF, and their Doctors have also told them to avoid high acidic foods (like citrus’ as you say) or food with caffeine such as coffee and chocolate. I am not a huge fan of sweets, but occasionally want some chocolate and I’ve changed from milk chocolate to dark chocolate as often as I can to curb the cravings. I am however a big lover of coffee and don’t think I could give that up! I usually have a cup in the morning and one throughout the day – not sure if this is too many – but I really find myself tired mid-afternoon and that second cup helps boost me enough to get through the workday. I don’t think it is what is bothering my sleep, but I suppose it could be? I think it is more anxiety unfortunately. I don’t know exactly what it is I am anxious about, and I am not upset about things (as one would perceive anxiety to cause) but my mind just doesn’t shut off easily at night, even though my body is so physically tired. I am going to talk to my Doctor about this on Feb 28.

          Glad you can continue to enjoy your coffee in the morning. It is definitely one of my morning pleasures!


          Hope you’re having a great week.


    • #11125

      Hi Lisa,

      Thanks so much for joining the forums and for your contribution to this topic! I also am having a hard time sleeping at night, and this is new for me. It really just started in the last 4 months or so, and is mostly difficulty with falling asleep but I seem to stay asleep ok. Is your disrupted sleep more about staying asleep or getting to sleep? Just curious if we share in this same experience. My Rheumatologist actually gave me a medication that was to help settle the pain endings on my nerves, as she felt my body was responding physiologically to numerous stressful experiences I’ve had in the past few months. She said this medication was a sleeping pill, nor was it any type of anti-anxiety or depression meds, but she did say it would likely help me fall asleep and rest better, but unfortunately that isn’t happening. I’m going to talk to him about this on Feb 28.

      I am glad you’re open to the idea of massage! See if you can find an RMT who will travel to your home, and then you will be able to just get up and crawl into bed. As Gil mentioned, that is such a wonderful feeling. I notice such a difference in my body’s ability to rest after a massage, so definitely worth a try. Have you ever had a massage before? I was just thinking that if you haven’t, it is probably a good idea to have the RMT and someone else there with you when you stand up after just in case you have the sensation you mentioned above. Since massage can have so many benefits systemically, especially if they are infrequent for you, your body could respond with the sensation you reference but if someone is there to help you after then hopefully it will be a very relaxing experience for you. If you’re comfortable in sharing, was the steroid use that caused this from Prednisone? I just want to be aware of this if so as I am on high doses of Prednisone.

      I am so glad you’re doing better though and they don’t happen as frequent, they must have been really scary at first! Thanks again for joining us and I look forward to continuing to get to know you Lisa.

      Take care,

    • #11141
       Lisa Neal


      I have trouble staying alseep. I usually wake up 3-4 hours after I fall asleep. Usually I am awake a couple of hours and then I fall back asleep. The steroid I took was Prednisone and I know I will have to be on it again in the future. They thought I had Cushing’s Disease for a while. I really don’t think they know for sure what was going on. I had the passing out issues, moonface, buffalo hump on my back, excessive sweating, large neck and of course weight gain. My blood pressure went from being high but under control to being low. I am not on any blood pressure medicine now. I had been on it for 15 years. This is the really weird thing….. my baby fine and super straight hair all of a sudden turned curly! I have a head full of curls so I am rolling with it! Nice change!

      Have a Blessed Day.


    • #11146

      Hi Lisa,

      Thanks so much for sharing your experience through your reply to all my questions! I’m so sorry to hear of your troubles with staying asleep – it is so frustrating when you wake up in the middle of the night and are unable to get back to sleep. When this happens to me it is a downward spiral of worry, ie. I always think, “if I can’t sleep, I’ll be really tired tomorrow and not be able to get the things done that I need to”. These thoughts cause me a lot of anxiety, and then that worry prevents me from getting back to sleep, so I can certainly relate to you how tough it is to be awake in the night. Is there anything you do that helps you get back to sleep? Some people get up and do things to tire their minds and bodies again, and other people I’ve heard say that they stay in bed and work on quiet projects without a lot of light or stimulation. Are either of these particularly helpful for you?

      I love that you’re rolling with the changes with your hair, that is awesome to hear! Although, I am sorry to hear about all the Prednisone side effects, that is hard. I can relate to you with some of them as well. The other thing that really bothered me with this steroid is wild mood swings. Did you ever experience that?

      When you were diagnosed, did your Doctor suspect you’ve had PF for awhile? Sorry for all the questions but I do appreciate all your answers!


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