I have recently gotten my EM diagnosis, and am wondering if it would be safe to travel by plane. I used to fly frequently, but haven't since before the flares began. Do any of you fly much? And if so, have you experienced any physical issues with air travel?
I did just get blood tests back that showed mostly normal results (only slightly low C3 and platelet counts), so I can be reasonably sure that I don't have a clotting-related disorder like polycythemia.
Hello LibbyK,
There was a short discussion about Flying last year between Kay and myself. It was her discussion entitled ‘Flying’ so if you go through her page you will find it. Put simply! I replied that I had flown from UK to Tasmania via Dubai and Melbourne, a very long journey which I had been completely dreading. It wasn’t anything like the ordeal I expected and although I wouldn’t recommend such a long journey to someone with EM it turned out to be do-able. If you can’t find the ‘Flying’ discussion I will write in greater detail.
Looking forward to hearing back from you
Nel
I have somewhat a bad case of EM. My feet are almost always flaring. When flying I take a cold water bag thru TSA and onto the plane. TSA has to test the water bag with theey swab and confirm it is not bad stuff. I have never had trouble getting my water bag thru security. And I take a bag that has a large opening so I can put ice (somewhat) easily into the bag. I can get ice from a flight attendant, from a self service beverage dispenser in the airport, from a bar. Everyone is quite helpful. I always reserve a wheelchair. The more I walk the more my feet flare so I try to minimize on this flight day. In November I flew to Bogota, Colombia South America. Back to St. Louis MO after Christmas. Flew to Alaska for a week mid January. I too used to fly lots but not so much any more. It takes lots out of me. AND I do take Oxycodone on those flight days as I know I am going to lose the battle and have a large glowing flare. Good luck.
My husband (he is the patient) and I flew to Brazil from Australia via Argentina, another very long flight. I think the biggest issue here is not whether it is safe more how comfortable you are with your condition on a plane when you have no access to cooling and being stuck in an uncomfortable seat. Like Jim said the flight attendants are usually very helpfull.
Thanks for your replies, guys. Nel, your comment did work and helped me find your other post! Thank you for doing that.
I figure the discomfort is a given and the possibility of flaring is to be expected... I really just want to make sure that flying hasn't caused any actual medical complication (beyond one's everyday EM experiences) for any of you.
I get terrible anxiety these days, so I'm very nervous about the prospect of getting on a plane now that I'm not the carefree, "invincible" wildchild I was a few years ago. I worry that I'll do something that will make the EM get permanently worse (like how one mild sunburn made it spread to my face - Oh, how I'd love to take that one sunny day back).
Your anxiety is so understandable LibbyK. Dare I say that the EM was probably going to spread to your face and perhaps that sunny day just hastened it. I had ear and nose flares but it was after eating a hot curry that I had my first devastating facial flare. A lesson learnt. Now I can’t put a scarf round my neck after about mid-afternoon without my face flaring but I guess it was likely to happen sooner or later with or without that curry.
I was a mess before that long flight, actually in tears of fright! I was lucky in that the only very overheated plane was the third one, after 21 hours flying, just a bearable 90 minute hop over the sea to Tasmania. I didn’t have more flares than I would at home, I avoided the sun as I do at home and was no worse than usual while I was away and after I got back. Flights are always uncomfortable and tiring but I am not worried about doing it again one day.
Nel
LibbyK said:
Thanks for your replies, guys. Nel, your comment did work and helped me find your other post! Thank you for doing that.
I figure the discomfort is a given and the possibility of flaring is to be expected... I really just want to make sure that flying hasn't caused any actual medical complication (beyond one's everyday EM experiences) for any of you.
I get terrible anxiety these days, so I'm very nervous about the prospect of getting on a plane now that I'm not the carefree, "invincible" wildchild I was a few years ago. I worry that I'll do something that will make the EM get permanently worse (like how one mild sunburn made it spread to my face - Oh, how I'd love to take that one sunny day back).
LibbyK, Have you tried/do you take aspirin? I attributed some of the relative ease of my marathon journey to taking aspirin to avoid a DVT and have taken a small aspirin every day since.
Nel
Hi Nel, no I haven't tried aspirin. My understanding was that aspirin only helps those with myeloproliferative issues, but maybe that's not the case? My blood tests actually came back with slightly low platelet count and low-end-of-normal hematocrit, so my blood may be a bit thin if anything. I will definitely ask my doc if it is OK/a good idea for me to try. Do you mind my asking if you have had those blood tests? (Obviously, totally understand if you don't want to say.) Thanks!
That was my understanding too from medical reports I read and for two years it didn’t occur to me that aspirin could help. When I realised that I had a major improvement I spoke to my neurologist and he sent me to Haematology. Blood tests showed nothing but they did a bone marrow biopsy to be absolutely sure and that would seem to say that not only do I not have a MPD but I am not likely to be cooking one up either!
My daughter has EM and is also helped by aspirin. We don’t have inherited EM so that goes against everything I have read too. She is a week off having her first baby and had to come off aspirin for this last month and the EM which had been in remission the whole of her pregnancy is causing her feet to redden and swell again.
I have joined other EM groups in my determination to find out everything I can about this confounded disease and I know that there are a lot of people on aspirin therapy, some taking very big doses, and convinced it is helping. Definitely worth asking your doctor.
Good luck
Nel
I used to be a flight attendant and I managed to work for a few months with EM before I had to leave my job. As a working flight attendant it was horrifically painful. I wore a wet cooling vest all of the time and poured water in my shoes. Ice down my shirt and Chilli Pads around my neck. It was still terrible but I was up and moving around instead of resting under the cool air. I never suffered from any complications other than the pain which is to be expected being physically active as I was.
I too am nervous a bit because I am going to have to fly this coming Monday because of a family emergency. It isn't the airplane travel that has me nervous as much as just being out of my home and not having the control of my environment. I have ordered a wheel chair to help me through the airport so at least I won't have to walk and while I am waiting at the gate I am assured a seat so I don't have to try to stand.
I think you will do OK with bringing cooling things like chilli pads and fans plus the support of a wheelchair I think should do the trick. That is what I am counting on anyway.
I hope your travels go well and you don't hurt too bad.
Thanks for sharing, Alina. This is all really helpful for me, reading about first-hand experiences - although what you went through trying to work that job with EM sounds truly awful. I expect that I will have extra flares just from stressing about traveling, on top of whatever flares are caused by the differing physical conditions themselves! I always carry a tiny misting/spray bottle of water in my purse when I leave home, since Chilly Pads can be so awkward to try to apply to the feet.
I hope that your flight on Monday is as comfortable as can be, and would very much appreciate hearing about your travel experiences when you have a chance to update. Best of luck, and I hope all turns out well for your family!
Alina Delp said:
Hello LibbyK.
I used to be a flight attendant and I managed to work for a few months with EM before I had to leave my job. As a working flight attendant it was horrifically painful. I wore a wet cooling vest all of the time and poured water in my shoes. Ice down my shirt and Chilli Pads around my neck. It was still terrible but I was up and moving around instead of resting under the cool air. I never suffered from any complications other than the pain which is to be expected being physically active as I was.
I too am nervous a bit because I am going to have to fly this coming Monday because of a family emergency. It isn't the airplane travel that has me nervous as much as just being out of my home and not having the control of my environment. I have ordered a wheel chair to help me through the airport so at least I won't have to walk and while I am waiting at the gate I am assured a seat so I don't have to try to stand.
I think you will do OK with bringing cooling things like chilli pads and fans plus the support of a wheelchair I think should do the trick. That is what I am counting on anyway.
I hope your travels go well and you don't hurt too bad.
Tizzy you are so kind. Such wonderful tips. I have so much to write to you but not the time at the moment because I am getting ready to leave in the morning! I just wanted to thank you quickly then back to work I go!
Thanks again tizzy.
Alina
I made it to my destination! It wasn't very far . I am only an hour and a half flight from home.
Getting through the airport was a breeze. literally!!!! I was whisked away in a wheel chair from the entrance of the airport. Not only did I have an electric fan on me they walked so fast it made a nice cool breeze for me! The wheel chair assistance person helped me with my bags through security so I wasn't left trying o bend over and lift things. I had my father with me as well if I needed help. Everything went well until I got on the airplane.
They didn't have the ground AC running on the plane. Probably because it is winter and it is cold outside. However all of those people squished together do a fine job of creating their own heat!! This was a difficult time as my feet, hands, face, and eyes started flaring. I brought some single use chemical icepacks. You shake them and them pop something inside and it is supposed to make a cold pack. That didn't work so well. It lasted all of 10 minutes before my own body heat warmed it up and it was no longer useful.
I broke out my little fan that helped while in the airport but didn't do much on the plane as it was just too hot!
A nice flight attendant who I am sure thought I was having menopause hot flashes told me of a much better fan at a store called Brookstone so I will be on the look out for that for my trip back. That and chilli pads for the flight home. We had to leave to catch our flight and I couldn't find my Chilli Pads!. I promptly ordered them online for delivery at my destination as I was cooking away on the plane waiting to get going.
After we took off it was not as bad because the AC finally kicked in and it was cool enough that my little fan and the ice water I had was enough. The rest of the trip out of the airport was fine and I am safely in my families home where they are keeping it nice and cool for me.
Over all it wasn't any worse than having to go spend a couple of hours at a doctors visit where they keep it on the warm side. I have suffered much worse for less reward. I hope this brings a little encouragement for those thinking of traveling but understandably a little hesitant.
Excellent news Alina. That’s what I found, no worse than a bad EM day but with greater reward. I guess spending however long it takes with my daughter in an overheated labour ward will be the same!Lol
Good luck with everything and you take care
Nel
Wow, you guys are so good at giving thoughtful replies! I can't tell you how much I appreciate you sharing your experiences, as it has been both comforting and informative. Now when it comes time for me to plan my trip(s), I will be less stressed out and better prepared. Many thanks!
What a helpful thread! I will definitely use these tips when I fly from New Orleans (by the way, Happy Mardi Geas, Y’all!) to Australia for my brother’s wedding next summer. Now who has tips for flying that long with a 3 year old and a 7 year old?
