Fatigue in IPF

Anyone any tips for allieviating the fatigue caused by IPF please? By the time OH has completed ablutions and presented himself ready for the day ahead he feels ready for a nap! Consultant says only borderline after !st appt....2nd appt booked for end of May. GP said 95% when testing with finger monitor(don't know what it's called) seemed happy with result but didn't say what he was measuring.Have purchased an Ultrabreathe but early days with use of it. Yours in hope AL

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  • Hi AL I have Pulmonary Fibroses and have found daily exercise helps in the long term.

    Even though exercise is tiring in itself it does give you more energy in the long run. I used to sleep 12 to 14 hours a day but now 8 hours is all I need.

    It also clears the lungs of mucus which helps your breathlessness. Its a win win situation.

    Give it a try

    Tony.

  • Hi there, has other half been to pulmonary rehab? If not then he may want to ask about that. Dad went when he was starting to be symptematic of his ipf and he absolutely loved it but he had to be careful compared to the others there as exercising when having ipf can be very difficult. The nurses monitored him carefully and he was given less to do. By the time the time the course ended and he started the second one the ipf had progressed quickly and he simply couldnt manage it. His consultant at the time told him he needs to conserve his energy for the things that he really wants to do.

    But at home dad would still walk when he could even if it was just to the kitchen and back, resting in between. To try and keep the strength in his legs you know. It depends at what stage you are at really and what he feels he is able to do. Has he tried energy drinks, lucozade etc? The key with ipf, I feel is to take things slowly and rest in between and accepting that lack of energy and tiredness is a part of ipf, depending on the progression.

    Positivity is key I also believe and laughing as much as you can and with lots of little uns around you both I am sure it is in abundance!

  • I can only reinforce what dall05 said. I do a 40 minute walk most days, a 1 hour cardiac rehab course, and I go ballroom dancing 2 or 3 times every week. The important thing to do is to monitor the SpO2 levels using a pulse oximeter which can be bought on the internet for about £30. If that dips below 90 then you should ideally rest until it recovers to your normal levels. If it regularly dips below 90 then you should talk to your consultant or clinic. They will then assess you for Oxygen therapy.

    This will not stop you getting breathless or tired but it is very important to keep the exercise going as long as possible. It is not wrong to get breathless.

  • I second what everyone above has said. If your diagnosis of IPF is confirmed I would also suggest asking to be seen by one of the specialist hospitals e.g. Royal Brompton or Papworth because they are aware of all the newest treatments that can perhaps slow down disease progression.

    Meanwhile tell your OH that ironing is a very good form of exercise - haha - and above all keep smiling. :-) X

  • Many thanks to all who have posted replies to my question, yes we are being positive,( some days positively manic! ) having a quirky sense of humour has always been an asset,and now having loads of new 'friends' on this network has put the prognosis into perspective

    . Maypal, OH says I can go run and jump or words to that effect if I expect him to do the ironing!

    Thnx also to HB for info on Oximeter I did wonder what the GP was doing they are all very techno-fied theses days

    Perhaps I'll get OH to build the next Ark.. now there's a thought..... tickets anyone???? AL

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