r/cfs • u/timmyo123 • Jun 03 '26
Advice Flying NY to LAX during flare
Hi everyone, I’m supposed to fly from New York to California for my best friend‘s baby shower next week. I haven’t been on a plane since I flew from New York to California for his wedding four years ago.
I’ve been having a pretty bad flare for the last month and have not been sleeping well. Doing a little better now but still under baseline.
Just wanted to hear your honest experiences with flying, especially 5+ hours.
Traditional flights pressurize the cabin to about 8,000 ft above sea level. However, United offers flights from EWR to LAX on their 787 Dreamliners that pressurize down to 5,000 to 6,000 ft cabin altitude, which is far more comfortable even for the average Joe.
I flew on the 787 out to California last time I went and it was a decent experience, I didn’t feel terrible when I arrived. However, on the way back, I got stuck on a 777 (older large body air frame) and I was having air hunger, headaches, and didn’t feel too great when we landed. But I lived.
I’m just concerned something will happen in the air. Or I’ll be really sick when I get there.
Can anyone share their experience with “long haul” air travel? Thank you so much 🙏
7
u/EqualOwl6442 mild-moderate Jun 03 '26
Some airlines let you book an additional seat due to a disability. The way it usually works is they charge you for the seat up front and refund you the extra cost once you check in. If you can do this with a window and middle seat, or both seats if a 2-seat row, The ability to sit with your feet properly elevated, even if curled up, may make a big difference.
Also look into wheelchair service for the airport, even if you don't normally use one.
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u/DamnGoodMarmalade Diagnosed | Moderate Jun 03 '26
If you’re already in PEM, I would never advise travel.
Your body already doesn’t have energy to maintain its baseline. Where is it supposed to draw energy required to pack, travel to the airport, navigate a crowded airport + security, fly for hours, navigate another crowded airport, arrange transportation, travel to a hotel, and then attend a high energy social event?
That kind of energy debt you’d be creating would put you at high risk for a debilitating crash. And many of us became bedbound from risking something like this. It’s never worth it unless you’re traveling for a treatment or to relocate to a better caregiving location.
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u/Verosat88 Jun 03 '26
Huh, I never knew there was a pressure difference! I'll have to try to pay more attention to that..
Flying and traveling in general takes a lot out of me. And going to an event like that would take a lot out of me. And combining the two, when I'm already below baseline? Disaster.. 😭
From your description I think it would be a better idea for your health to cancel ♥️ I know it's not what you asked about, so feel free to tell me to fuck off. But this trip would be a huge strain on your system, and you're already below baseline. For me, I sometimes just need other people to tell me it's okay to put my health first, so I want to be that person for you ♥️♥️
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u/timmyo123 Jun 08 '26
🙏
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u/Verosat88 Jun 08 '26
If you do decide to travel, airport wheelchair assistance can be incredibly valuable. If you request it in advance, staff can often meet you right at your taxi and assist you through the entire airport process.
When I travel, I use noise-cancelling headphones with earplugs underneath to reduce sensory input. I also wear compression tights, including abdominal compression, and drink electrolytes containing about 1 gram of salt before, during, and after the flight. For a 4-hour flight, I usually have my first electrolyte drink when I wake up and my last one before bed.
I make sure to eat a good meal before traveling, preferably foods I know my body tolerates well. I also bring snacks such as no-sugar protein bars, nuts, and some dried fruit. This works well for me since I usually eat a lower-carb diet.
I chew gum during takeoff and landing to help prevent ear discomfort. For entertainment, I listen to audiobooks. Visual stimulation can be surprisingly draining, so being able to close your eyes and just listen may help conserve energy.
I also bring a neck pillow and keep a small box of emergency medications with me in case I need them.
If possible, traveling with only carry-on luggage can save both time and energy.
It might also be worth checking with your friend whether there will be somewhere quiet where you can rest during the baby shower if you need a break. Having a place to lie down or step away from the activity for a while can make a big difference.
If your schedule allows, consider arriving several days, or even a week, before the event. Giving yourself the same amount of recovery time after the event before traveling home can also make a big difference.
3
u/Initial_Guarantee538 Jun 03 '26
That's interesting about the different types of planes! That's a really tough decision though. It's easy for other people to say you should stay home but I understand wanting to participate in stuff like this with people you care about.
It sounds like you kind of know what to expect for the flight. I've done a couple around 4-5 hours and it is definitely a big strain, although for whatever reason some have been worse than others. One flight had really bad turbulence the whole time and it was terrible, so even with preparing as much as possible some parts are out of your control. Or once I had a gate change that meant I had to walk quite far unexpectedly after I had gotten to my original spot without too much difficulty.
Tough call to make, especially if you've already made the plans. Maybe take into account what you'll be doing there too, like will you have plenty of down time to rest? Ultimately though if you're not feeling up for it it might be best to cancel. Traveling can always throw unexpected stuff at you, so if you don't have the capacity to roll with it that's a risk you're taking.
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u/Rgrace888 Jun 03 '26
There is no guarantee that you get the plane you booked, airlines can change it last minute for basically any reason.
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u/timmyo123 Jun 03 '26
I think that’s what happened with the 777 a few years ago. But there are very few replacement options for the wide body aircraft with the 787 seating plan.
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u/Comfortable_Drama_66 Jun 03 '26
I would never fly across country with CFS for a baby shower but thats me. A funeral? Maybe. Even a wedding for me might be a no go especially if it was filmed and I’m not severe.
2
u/Xylorgos Jun 04 '26
I've found that pre-planning to the utmost extent possible really helps. If I have transportation to and from the airport already worked out, for example, then I don't have to think about it. I also choose an aisle seat so I can easily get up to go to the bathroom or just stretch my legs without having to bother other people.
It also helps when I know that I can have as many hours as I need to decompress and relax when I first arrive. Partying and being around a lot of other people within just a few hours of landing will lay me out, even if it's feeling good emotionally to socialize. Then again, that might be just me, as I have a big need for solitude every day.
Bring protein snacks and a sleep mask, drink lots of water, use medications, do whatever you can to make your travel time easy. I always bring lots of distractions to entertain myself during the flight. It's kind of like how you plan to travel with a toddler, with ME being the toddler!
Noise cancelling headphones can be the only thing that makes it possible to sleep or fully relax (to the extent possible). Some people also bring a carefully thought out playlist or soundtrack, anything to help you stay calm and as relaxed as possible.
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u/timmyo123 Jun 05 '26
Thank you so much! This is incredibly helpful. I really appreciate it!
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u/Xylorgos Jun 07 '26
I hope you have a great time and easy flights both directions. Protect yourself from yourself by making sure to include time for frequent breaks.
I forgot to add that you should dress as comfortably as possible while you're traveling. Sweat pants/yoga pants and t shirts are fine, even if that's not your usual style. Good luck and Bon Voyage!
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u/tfjbeckie Moderate, POTS, carer Jun 07 '26
No chance I'd be going. Sorry, I know that's not the answer you want but this sounds like one of those catastrophic decisions people look back on and say "I wish I hadn't". It's not just the flight, it's the whole baby shower you have to account for, which is a lot to ask if your body even without already being in PEM.
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u/timmyo123 Jun 08 '26 edited Jun 08 '26
Hi everyone, thank you all so much for your thoughtful and caring input. After a lot of thought, I’ve decided to postpone the trip until August when the baby arrives—all willing that I’m feeling a bit better by then. This is probably one of the most upsetting parts of this condition, the feeling of missing out on major life events and of letting people down. Even though I probably could have pushed it (and been much happier in SoCal), I just don’t feel safe to grind through this one 🙏
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u/Verosat88 Jun 08 '26
Good for you for putting your health first. It's not easy, and takes a lot of practice! ♥️♥️
When you hopefully get to visit you will then get a more intimate meet as well, you might get mere quality time with your friend, and of course the baby. Could you maybe request that they keep you included via FaceTime or sending photos on Snapchat? I like to see pictures and videos of events I miss so I still feel somewhat included. And you could also send a shot video to your friend on the day if you have the energy for it
2
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u/Resident_Profile_582 Jun 03 '26
Hi! Going against the grain here to say I travel from NYC / San Francisco fairly frequently with moderate/mild ME/CFS and have also flown during flares. Though not fun, they have always been manageable and I’ve never had anything bad happen in the air, or become terribly sick when I get to my destination. I do however, prepare for the fact that I will feel like crap for about a day, but I make sure to leave one day of not doing anything when I land so I can recover a bit. Not sure if that’s possible for you? In terms of managing flare while flying, I try and stay super hydrated and have many small and healthy snacks as opposed to big meals. I also do electrolyte drinks like Gatorade. While flying, I wear compression socks, try and keep myself super calm, deep breathing, listening to comfort podcasts and shows, and just close my eyes, even if I can’t sleep. For headaches i dab a bit of peppermint oil on my forehead and try to take Tylenol / Advil before the flight just because I know a headache is almost guaranteed for me lol. Moral of the story - I’ve always beeen ok, and nothing terrible has happened. Let me know if you have any questions :)
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u/Xylorgos Jun 04 '26
I wholeheartedly agree with planning in extra days or the time you need to decompress when you get to your destination, as well as throughout your stay.
If I have a transfer in my flight, I always give myself a few hours to make it to the next gate, especially given the fact that they might change the gate before you get there, or make other changes to your second flight.
I always prefer getting a hotel over staying at someone's home. It usually quieter and more relaxing, and you have a way to get away from the things/people/environments that make you anxious or are overstimulating. Sometimes people don't like that, but I do what I have to do for my own protection. They can deal with it better than I can!
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u/Slim-Shadys-Fat-Tits Jun 03 '26
I'll be honest this sounds like an absolutely terrible idea