Janey Henderson

This is such an interesting read. I have same problem. When I’m cold nothing seems to warm me up. The hot spells are awful, I take of outer cloths because I am just boiling. The sweat makes my hair wet. It never occurred to me this could be tied in with IPF.

I’m about to start physio for this so very interested to read the responses.

How strange. I too have noticed I’m doing that, particularly first thing in the morning. I use a saline spray in my nostrils which seems to help. If that doesn’t work I have been known to have a bourbon, for medicinal reasons only.

I take 20mg a day of Prednisone. Taking them as made a big difference to my breathing. I was really struggling before but not quite so bad at the moment.

When I was first put on oxygen the 02 team told me the funniest question they’d been asked was “can you overdose on oxygen?” The answer was no.

I too suffer with an incredibly sore mouth. It’s particularly painful where the gum meets the lip, feels as though its been cut. The only thing that helps is soluble painkiller which I then hold in my mouth for as long as possible. It’s so bad that it prevents me from eating at times.

Thank you to everyone contributing to this thread. It answered questions I didn’t even know I had. I have noticed that when I’m super tired my oxygen levels are low.