Is it safe to fly? Are there any adverse affects or flares during or after flight? I read that there are flare ups after flight. Is that true? If anyone can help I would greatly appreciate it. I haven't flown since my symptoms or diagnosis and am worried.

Hi Kay and sorry it has taken me so long to comment.

I had to make a very long journey last year, a 7 hr flight which turned into 9 hours, half an hour in an airport and then a 14 hour flight, 6 hours in another airport waiting for an hour and a half hour flight followed by a two hour drive. I was sick with worry before I left but it wasn’t anything like as bad as I expected. I didn’t flare more than I would at home and on the long flight I was relieved to discover that compression socks actually helped with the flares. I didn’t sleep much and took to wandering about to cool my feet but I do that at home too. The worst bit was the waiting at airports I did not have any great flares on arrival nor on my return and am looking forward to going again some time.

Hi Nel, thank you so much for the response. Your information is greatly appreciated. Now I know I won't need to worry or cancel a trip. Thank you!

We are all different apart from the burning pain but even if it all goes pear-shaped it is just a matter of hours and you will be able to cope. I kept telling myself before I went that it is just two days (actually a day and a half each way) out of my life and I have already survived so much at age 71 I surely could manage two days of extra trouble. So in the event I was able to ‘enjoy’ the flight because it was so much easier than expected. Good luck with the journey and let us know how you get on.

My iPad won’t let me copy and paste this discussion for the benefit of LibbyK who is asking about the safety of air travel with ME. I hope this comment brings this discussion to the top of the list