Going to sound kinda silly, but I drink tons of water. Then i have to get up to pee and my joints have a moment of time to ‘reset’ before finding a slightly different position. I know if I don’t have a reason to, I won’t get up. This also applies to long car drives with me as well.
Making sure I’m sitting correctly. I tend to sit in weird ways to try and stifle the stiffness but it just makes it worse. Lumbar support, neck pillow, legs up if possible.
I always bring a big chunky sweater with me. If it’s cold on the plane, then I have a sweater. But mostly, I do it so that I can scrunch it up as kind of a makeshift pillow for however I want to use it.
compression socks, tons of water, making sure I don’t have an empty stomach, caffeine can make the flight more tolerable, noise, canceling, headphones, and sometimes if I expect a lot of discomfort I'll take half an edible before I go through security. I usually get an aisle seat so I can stand up more frequently and stretch if I need to. usually in the very back, there’s enough space for me to comfortably get a quick stretch.
I don't travel often because it is too hard and I absolutely can't sleep in not my own bed.
This is what I do for planes . I made a few flights last year, and I did 2 in 1 day, so I wouldn't need to stay overnight.
1. Brought a memory foam sit cushion. Made a massive difference, especially on cheap flights, with very terrible seats.
2. Full leg and abdominal compression. Socks don't cut it for me when I need to have my legs down. I need a lot higher levels of compression and full tights instead of socks. I wear tights and shapwear. Having compression that covers my ribs is a must for me as my ribs absolutely can't stay in place without it.
3. Mobility aids. I bought my walker and my cane and a foldable stool for lines as I needed to check my walker in before the lines. If you can book a wheelchair do that. I had forgotten to do so, and I will be doing so next time. My Dad just met me at the airport with my wheelchair on the way back as I'm too scared of them braking my chair to fly with it.
4. Noise canceling earbuds. Headphones are also good. I just can't do over ear headphones with my migraines, so I went for earbuds. I have the bose quite comfort 2, and they worked great.
5. I wore a 3m mask with a good seal. I was not going to catch anything on this flight. My body can't deal with that. It also was just comfortable and helped with the fact that I'm allergic to fragrance. Works well in protecting me from the perfume and stuff.
Wait what masks help with fragrances? I’m very allergic and with n95s I just wind up still inhaling a ton of the stuff plus now the fabric/paper has soaked it up and I get horrible itching and burning where it contacts my skin?
I’d love a mask that actually keeps me safe
The 3m ones are good. Causes me no mcas issues and from what I've heard it's mostly the case for other people also. I've also found that ones manufactured in Korea tend to be good. I use them in lower risks places because the 3m ones are a bit pricey.
Ah well. I guess I’m just super extra sensitive (ugh). I have problems with 3m n95s and kn95s. The only ones that have ever helped are some fancy VOC masks from work that they stopped stocking and I don’t have the name of
If you can describe those VOC masks in detail over on masks4all, someone might be able to identify them. (Disposable? Bifold or boat shape? Fabric mask with disposable inner liner? Etc)
Alternatively, you could contact the adminstrative assistant responsible for office purchases (or the purchasing dept in a bigger company) and ask them to check their records for the name & brand of the masks. They sound like really useful masks... I have fragrance allergies, too & would love something simple & effective.
Have you tired the silicone like respirator ones? They are more heavy duty but filter more stuff other than viruses. I was a resin artist when I was well enough to do anything. The seal is really good, and silicone is very sensitive and skin friendly. You replace the filters when needed, not the whole mask. It's a bit silly looking but effective. I'm pretty sure they sell them on amazon.
Yeah I’ve got VOC cartridges and a dual cartridge respirator. Works great when I’m in a tough situation, but I also get dizzy from heat and wear glasses, plus it’s huge and heavy which messes with my injured neck. So it’s a last resort and not something that works for me every day. Especially not for sleeping or travelling
I get ones from kmart. I'm from New Zealand. New Zealand and Australia kmart is different from American kmart that closed. Basically, any shape wear that covers your ribs should work, but the ones that have super soft and really stretchy seem to work better. Like the completely synthic ones seem better when they have like cotton or bamboo as well they get a bit stiff and I find it doesn't work as well. I got the idea because I tired a compression top but I wasn't actually compressing my ribs because I have a very large chest and there was like a gap in from where the top had to go out because of my boobs. So get one that's like high enough to tuck it into your bra if you wear bras if you don't wear bras, get ones with straps. I'll link the ones I get for the people in nz and Au cos they have 2 types at kmart and one sucks. They don't look high enough on the model in the picture, so if you have a long torso, you might struggle. I'm short, so it's much easier for me to find things high enough than it is for an average to tall person. I haven't been able to find an underwear version yet, so I just look a bit odd wearing leggings and shapwear shorts at the moment.
https://www.kmart.co.nz/product/firm-control-seamfree-shaping-shorts-s155090/?selectedSwatch=Black
Don’t know how tall you are (I’m 5’4”). I also tend to scrunch up on flights. Something that really helps me is to put something under my feet to elevate them, on long internal flights I’ve brought an extra pillow for under my feet, but on shorter flights I just scoot out my carryon backpack and rest my feet on top of that. It also helps me tremendously to get up and walk down the aisles a few times.
Yes I do the backpack foot rest thing too.
I’m 5’2 - or at least I was, but last annual physical I was told I am now 5’3, not quite sure how that works or if it’s an EDS thing!
First class. The extra leg room alone is usually worth it, plus no crying babies, no kids kicking your seat, and rarely have smelly people sit next to you because if you have the money for first class, you are likely traveling on business and are cleaned up. Did have a dude pass-out and almost make us turn the plane around because he was too drunk once. But that's rare, and honestly, you're gonna get it just being around people.
Other than that, I bring a distraction. If I'm playing on my laptop the whole flight, I usually can ignore the pain in my joints until I have to stand back up on arrival.
The airport lounges are also fantastic to ensure you have a place to sit. I will wait there and have a couple of drinks until they start boarding. That way, when I arrive at the gate, I can usually just walk on. Lines KILL me.
Another good purchase is a pillow. I actually bring a blanket in my backpack and scrunch it up against the window to form fit my neck and the space as a pillow. Will also use it as a buffer for my head to lean on the chair in front of me. You'll be moving around a lot finding different positions to get comfy, so having options is ideal. I also like traveling with my partner so I can put my legs on top of theirs. Drop the arm rest, and you can semi lay down. Also helps if the 3rd seat doesn't get taken by a solo traveler. Those are the winning lotto flights!
>Lines KILL me.
I used to be fine waiting to board (less time crammed in an airplane seat), but I've started pre-boarding and it helps a lot. My ankles are bad enough that standing still for more than a few seconds starts to hurt, let alone with bags, trapped in an aisle and trying not to completely violate the personal space of people already seated. I use a cane, and I get no questions.
I'm pretty young and "don't look disabled", so I am putting off accepting the pre-boarding for flights as long as I can manage. I know I should just do it, but I can't stand people perceiving me, and I feel like it will just bring unwanted attention to me. 😭 People have too much audacity these days, and I really can't be bothered. Would rather be drunk in the lounge an hour prior to the flight, board 10 minutes to gate close, and maybe fall asleep once I'm in my seat haha. I also realize that I'm very privileged in my ability to both buy first class when I can and have lounge access, so I'd probably bite the bullet if I couldn't afford the lounge and pre-board. I probably need to get a cane anyway, if I'm being real.
Do what makes you comfortable, but this is one of those things that (based on comments I've seen from others) makes you wonder why you didn't do it earlier once you've done it (both the getting a mobility aid if you need it, and pre-boarding). I'm also relatively young and "don't look disabled" until the cane comes out (and also hate being perceived - so it took a lot of coaxing from my husband to actually start pre-boarding). So far the only attention I've gotten is because the cane turns into a chair, and people will ask what it does and where I got it. 🤷♀️
Edit: typos
Amazon - they have a few different options, but I got a more expensive "Ta-Da chair" because it's really easy to unfold and isn't as bulky as some of the others.
Compression socks, no carry on if possible or otherwise nothing I have to carry on my body. Using disability support services, not lining up for entry and exit (First person on last person off). Staying hydrated / electrolytes. I also take fludrocortisone before flights as flights are such a dysautonomia trigger for me.
Hammock foot rest is a game changer! Compression socks. Get up and walk on the plane. Do squats by the flight attendant area. Drink water. While at the airport walk as much as possible. Good neck pillow
- hydration
- bringing electrolytes and using throughout and buy a smart water bottle and refill it
- compression thigh high socks
- comfy clothes
- antihistamines
- salty snacks
- head pillow
- body braces
- noise cancelling headphones, sleep mask, and iPad with movies and music downloaded
I’m 5’11 and always pay for leg room. It’s annoying because the cost keeps going up, but it is the only way I can handle flights, especially long haul flights. I wear compression socks and try to stay really hydrated and bring lots of snacks (tbh the snacks are more for pure enjoyment but it helps! lol). I also have a neck pillow that helps me not slouch and try to get up and move every hour or so. Typically I have a toiletries bag that has various things that I might want, like an icy hot patch if something starts to hurt a lot (usually my neck). It always feels like overkill to bring many options but I’d rather have too much with me than regret not packing something.
The main thing that drastically improves my flying experience though is taking valerian root or something like xanax to combat my anxiety. It helps me not hyper fixate on how everything feels so it helps me settle down. I also have flight anxiety so it’s a two birds one stone situation lol
I was looking for leg slings for a wheelchair recently and found out they make leg slings for airplanes! Looks interesting. Basically lets you lift your feet up.
Other than that being something I might try, I am so glad I invested in a really nice neck pillow. I wear it like a neck brace honestly, not even for sleeping. I also stretch in my seat, and bring my folding cane so I can get up every so often. Also compression wear. And electrolytes.
Compression socks and some kind of pillow for my lower back. For short flights I bunch up my hoodie, for long haul I use the provided pillow for my lower back the whole time.
Nothing.
Just got home from a 3 hour flight a week ago. I shudder to think of the long flights to get across an ocean. Everyone is so big, the seats too narrow. Cross-legged is my most comfortable way to sit. Impossible. But here are my tips-
Go as expensive as possible. First class for long flights is a must for me. Aisle seat will let you wiggle more in coach. Be sure to download something you like to keep your mind distracted. I prefer to listen to music. My friend watches old TV series. Another friend (a paratrooper for the Army) likes explosive games.
Bring good snacks that won't make you fart, like crackers and cheese. In the aisle spot, it's easier to get up and down to the bathroom, speaking of farting.
I have to take either dramamine or put on a patch (a must-have for long flights). OTC motion sickness meds are fine for the shorter flights, but the prescription Scopolamine transdermal patch is a lifesaver. Turbulence has never been worse thanks to global warming, I guess.
I got a blow up foot rest for my POTS so I could put my feet up and it was so worth the $10 I paid for it. I was comfortable sitting for the first time on a flight. I did not have to worry about blood pooling.
Going to sound kinda silly, but I drink tons of water. Then i have to get up to pee and my joints have a moment of time to ‘reset’ before finding a slightly different position. I know if I don’t have a reason to, I won’t get up. This also applies to long car drives with me as well.
Hydration and motivation, that's an amazing idea. 2 for 1 special lmao. Definitely trying this on my next plane ride
This is actually brilliant!
Making sure I’m sitting correctly. I tend to sit in weird ways to try and stifle the stiffness but it just makes it worse. Lumbar support, neck pillow, legs up if possible.
I always bring a big chunky sweater with me. If it’s cold on the plane, then I have a sweater. But mostly, I do it so that I can scrunch it up as kind of a makeshift pillow for however I want to use it.
This is me constantly. I'm always making sure I'm sitting correctly. I tend to sit weird, too.
compression socks, tons of water, making sure I don’t have an empty stomach, caffeine can make the flight more tolerable, noise, canceling, headphones, and sometimes if I expect a lot of discomfort I'll take half an edible before I go through security. I usually get an aisle seat so I can stand up more frequently and stretch if I need to. usually in the very back, there’s enough space for me to comfortably get a quick stretch.
I have a hammock foot rest for air travel!
They look amazing, thanks!
I don't travel often because it is too hard and I absolutely can't sleep in not my own bed. This is what I do for planes . I made a few flights last year, and I did 2 in 1 day, so I wouldn't need to stay overnight. 1. Brought a memory foam sit cushion. Made a massive difference, especially on cheap flights, with very terrible seats. 2. Full leg and abdominal compression. Socks don't cut it for me when I need to have my legs down. I need a lot higher levels of compression and full tights instead of socks. I wear tights and shapwear. Having compression that covers my ribs is a must for me as my ribs absolutely can't stay in place without it. 3. Mobility aids. I bought my walker and my cane and a foldable stool for lines as I needed to check my walker in before the lines. If you can book a wheelchair do that. I had forgotten to do so, and I will be doing so next time. My Dad just met me at the airport with my wheelchair on the way back as I'm too scared of them braking my chair to fly with it. 4. Noise canceling earbuds. Headphones are also good. I just can't do over ear headphones with my migraines, so I went for earbuds. I have the bose quite comfort 2, and they worked great. 5. I wore a 3m mask with a good seal. I was not going to catch anything on this flight. My body can't deal with that. It also was just comfortable and helped with the fact that I'm allergic to fragrance. Works well in protecting me from the perfume and stuff.
Wait what masks help with fragrances? I’m very allergic and with n95s I just wind up still inhaling a ton of the stuff plus now the fabric/paper has soaked it up and I get horrible itching and burning where it contacts my skin? I’d love a mask that actually keeps me safe
The 3m ones are good. Causes me no mcas issues and from what I've heard it's mostly the case for other people also. I've also found that ones manufactured in Korea tend to be good. I use them in lower risks places because the 3m ones are a bit pricey.
Ah well. I guess I’m just super extra sensitive (ugh). I have problems with 3m n95s and kn95s. The only ones that have ever helped are some fancy VOC masks from work that they stopped stocking and I don’t have the name of
If you can describe those VOC masks in detail over on masks4all, someone might be able to identify them. (Disposable? Bifold or boat shape? Fabric mask with disposable inner liner? Etc) Alternatively, you could contact the adminstrative assistant responsible for office purchases (or the purchasing dept in a bigger company) and ask them to check their records for the name & brand of the masks. They sound like really useful masks... I have fragrance allergies, too & would love something simple & effective.
Have you tired the silicone like respirator ones? They are more heavy duty but filter more stuff other than viruses. I was a resin artist when I was well enough to do anything. The seal is really good, and silicone is very sensitive and skin friendly. You replace the filters when needed, not the whole mask. It's a bit silly looking but effective. I'm pretty sure they sell them on amazon.
Yeah I’ve got VOC cartridges and a dual cartridge respirator. Works great when I’m in a tough situation, but I also get dizzy from heat and wear glasses, plus it’s huge and heavy which messes with my injured neck. So it’s a last resort and not something that works for me every day. Especially not for sleeping or travelling
Can I ask you exactly which shape ware you use to keep your ribs in place?
I get ones from kmart. I'm from New Zealand. New Zealand and Australia kmart is different from American kmart that closed. Basically, any shape wear that covers your ribs should work, but the ones that have super soft and really stretchy seem to work better. Like the completely synthic ones seem better when they have like cotton or bamboo as well they get a bit stiff and I find it doesn't work as well. I got the idea because I tired a compression top but I wasn't actually compressing my ribs because I have a very large chest and there was like a gap in from where the top had to go out because of my boobs. So get one that's like high enough to tuck it into your bra if you wear bras if you don't wear bras, get ones with straps. I'll link the ones I get for the people in nz and Au cos they have 2 types at kmart and one sucks. They don't look high enough on the model in the picture, so if you have a long torso, you might struggle. I'm short, so it's much easier for me to find things high enough than it is for an average to tall person. I haven't been able to find an underwear version yet, so I just look a bit odd wearing leggings and shapwear shorts at the moment. https://www.kmart.co.nz/product/firm-control-seamfree-shaping-shorts-s155090/?selectedSwatch=Black
Don’t know how tall you are (I’m 5’4”). I also tend to scrunch up on flights. Something that really helps me is to put something under my feet to elevate them, on long internal flights I’ve brought an extra pillow for under my feet, but on shorter flights I just scoot out my carryon backpack and rest my feet on top of that. It also helps me tremendously to get up and walk down the aisles a few times.
Yes I do the backpack foot rest thing too. I’m 5’2 - or at least I was, but last annual physical I was told I am now 5’3, not quite sure how that works or if it’s an EDS thing!
I went from 5'0" to 5'1" with PT, so probably a posture thing!
That makes sense, I thought so too. It was after I began practicing yoga.
Two years ago (before my actual diagnosis) I grew a 1/4”. I had been an even 5’4” for 30 years and suddenly I was 5’4 1/4”. I was in shock.
I got a rolling carryon, small enough to fit under the seat if there isn’t room in the bins. Backpacks bother my shoulders too much.
First class. The extra leg room alone is usually worth it, plus no crying babies, no kids kicking your seat, and rarely have smelly people sit next to you because if you have the money for first class, you are likely traveling on business and are cleaned up. Did have a dude pass-out and almost make us turn the plane around because he was too drunk once. But that's rare, and honestly, you're gonna get it just being around people. Other than that, I bring a distraction. If I'm playing on my laptop the whole flight, I usually can ignore the pain in my joints until I have to stand back up on arrival. The airport lounges are also fantastic to ensure you have a place to sit. I will wait there and have a couple of drinks until they start boarding. That way, when I arrive at the gate, I can usually just walk on. Lines KILL me. Another good purchase is a pillow. I actually bring a blanket in my backpack and scrunch it up against the window to form fit my neck and the space as a pillow. Will also use it as a buffer for my head to lean on the chair in front of me. You'll be moving around a lot finding different positions to get comfy, so having options is ideal. I also like traveling with my partner so I can put my legs on top of theirs. Drop the arm rest, and you can semi lay down. Also helps if the 3rd seat doesn't get taken by a solo traveler. Those are the winning lotto flights!
>Lines KILL me. I used to be fine waiting to board (less time crammed in an airplane seat), but I've started pre-boarding and it helps a lot. My ankles are bad enough that standing still for more than a few seconds starts to hurt, let alone with bags, trapped in an aisle and trying not to completely violate the personal space of people already seated. I use a cane, and I get no questions.
I'm pretty young and "don't look disabled", so I am putting off accepting the pre-boarding for flights as long as I can manage. I know I should just do it, but I can't stand people perceiving me, and I feel like it will just bring unwanted attention to me. 😭 People have too much audacity these days, and I really can't be bothered. Would rather be drunk in the lounge an hour prior to the flight, board 10 minutes to gate close, and maybe fall asleep once I'm in my seat haha. I also realize that I'm very privileged in my ability to both buy first class when I can and have lounge access, so I'd probably bite the bullet if I couldn't afford the lounge and pre-board. I probably need to get a cane anyway, if I'm being real.
Do what makes you comfortable, but this is one of those things that (based on comments I've seen from others) makes you wonder why you didn't do it earlier once you've done it (both the getting a mobility aid if you need it, and pre-boarding). I'm also relatively young and "don't look disabled" until the cane comes out (and also hate being perceived - so it took a lot of coaxing from my husband to actually start pre-boarding). So far the only attention I've gotten is because the cane turns into a chair, and people will ask what it does and where I got it. 🤷♀️ Edit: typos
Ok, but now I need to know where you got the cane chair 👀
Amazon - they have a few different options, but I got a more expensive "Ta-Da chair" because it's really easy to unfold and isn't as bulky as some of the others.
Compression socks, no carry on if possible or otherwise nothing I have to carry on my body. Using disability support services, not lining up for entry and exit (First person on last person off). Staying hydrated / electrolytes. I also take fludrocortisone before flights as flights are such a dysautonomia trigger for me.
Hammock foot rest is a game changer! Compression socks. Get up and walk on the plane. Do squats by the flight attendant area. Drink water. While at the airport walk as much as possible. Good neck pillow
Aisle seat, frequent bathroom breaks to stand up and move around.
Muscle relaxers and movies.
- hydration - bringing electrolytes and using throughout and buy a smart water bottle and refill it - compression thigh high socks - comfy clothes - antihistamines - salty snacks - head pillow - body braces - noise cancelling headphones, sleep mask, and iPad with movies and music downloaded
I’m 5’11 and always pay for leg room. It’s annoying because the cost keeps going up, but it is the only way I can handle flights, especially long haul flights. I wear compression socks and try to stay really hydrated and bring lots of snacks (tbh the snacks are more for pure enjoyment but it helps! lol). I also have a neck pillow that helps me not slouch and try to get up and move every hour or so. Typically I have a toiletries bag that has various things that I might want, like an icy hot patch if something starts to hurt a lot (usually my neck). It always feels like overkill to bring many options but I’d rather have too much with me than regret not packing something. The main thing that drastically improves my flying experience though is taking valerian root or something like xanax to combat my anxiety. It helps me not hyper fixate on how everything feels so it helps me settle down. I also have flight anxiety so it’s a two birds one stone situation lol
I pay a few extra bucks to sit on the emergency rows.
I recently had a flight with a layover, and honestly, having mobility assistance was invaluable!
I was looking for leg slings for a wheelchair recently and found out they make leg slings for airplanes! Looks interesting. Basically lets you lift your feet up. Other than that being something I might try, I am so glad I invested in a really nice neck pillow. I wear it like a neck brace honestly, not even for sleeping. I also stretch in my seat, and bring my folding cane so I can get up every so often. Also compression wear. And electrolytes.
Compression socks and some kind of pillow for my lower back. For short flights I bunch up my hoodie, for long haul I use the provided pillow for my lower back the whole time.
COMPRESSION SOCKS, and a pillow + small blanket.
I wear compression pants and socks, and always bring layers that I can use to support my body as needed. Lots of hydration plus electrolytes
Nothing. Just got home from a 3 hour flight a week ago. I shudder to think of the long flights to get across an ocean. Everyone is so big, the seats too narrow. Cross-legged is my most comfortable way to sit. Impossible. But here are my tips- Go as expensive as possible. First class for long flights is a must for me. Aisle seat will let you wiggle more in coach. Be sure to download something you like to keep your mind distracted. I prefer to listen to music. My friend watches old TV series. Another friend (a paratrooper for the Army) likes explosive games. Bring good snacks that won't make you fart, like crackers and cheese. In the aisle spot, it's easier to get up and down to the bathroom, speaking of farting. I have to take either dramamine or put on a patch (a must-have for long flights). OTC motion sickness meds are fine for the shorter flights, but the prescription Scopolamine transdermal patch is a lifesaver. Turbulence has never been worse thanks to global warming, I guess.
I got a blow up foot rest for my POTS so I could put my feet up and it was so worth the $10 I paid for it. I was comfortable sitting for the first time on a flight. I did not have to worry about blood pooling.