Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 03-03-2016, 10:29 PM #1
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Default CRPS and Flying

I am wondering. How do all of you fare with your CRPS, when you have to fly in an airplane? I would have to be in an airplane for about 4 hours?
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Old 03-03-2016, 10:53 PM #2
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I have usually done ok. I always get a window seat and request pre-boarding for my disability...both to reduce the chances of being bumped by other passengers. I also make sure that I am dressed warmly as I find planes cold and all those little air vents just scream flare up to me. When I was using Lidoderm patches...just made sure to bring them with but wait to put on until you are past security to avoid them having to test the patch. On the plane itself I also make sure I have everything I might need within reach and place most needed stuff in the pocket in front of me. I also always bring my own blanket which I strategically place around me for my comfort. I always do some small stretching exercises while in flight to keep me "moving" but without me having to get out of my seat. I have my iPod with and listen to my flare up mix to drown out all the various noises that can cause flare ups..also sometimes listen to an audiobook if I am really invested in one at the time but a plane ride is not the time to start a new book for me because I have a hard time losing myself in them immediately. And most importantly I bring something to keep my mind distracted from the pain because no matter what I do there's nothing that can STOP the vibrations of the plane. For me that is my stitching. I so try to get a seat by the wings...less turbulence...but still vibrations. The one time I flew first class since RSD...I got the back most row because no one behind me to bump the seat. Hope some of that helps...I am very worried about my next plane ride because it will be with the baby and a lot of my methods for dealing with and preventing the pain will be out the window.
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Old 03-03-2016, 11:09 PM #3
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I have usually done ok. I always get a window seat and request pre-boarding for my disability...both to reduce the chances of being bumped by other passengers. I also make sure that I am dressed warmly as I find planes cold and all those little air vents just scream flare up to me. When I was using Lidoderm patches...just made sure to bring them with but wait to put on until you are past security to avoid them having to test the patch. On the plane itself I also make sure I have everything I might need within reach and place most needed stuff in the pocket in front of me. I also always bring my own blanket which I strategically place around me for my comfort. I always do some small stretching exercises while in flight to keep me "moving" but without me having to get out of my seat. I have my iPod with and listen to my flare up mix to drown out all the various noises that can cause flare ups..also sometimes listen to an audiobook if I am really invested in one at the time but a plane ride is not the time to start a new book for me because I have a hard time losing myself in them immediately. And most importantly I bring something to keep my mind distracted from the pain because no matter what I do there's nothing that can STOP the vibrations of the plane. For me that is my stitching. I so try to get a seat by the wings...less turbulence...but still vibrations. The one time I flew first class since RSD...I got the back most row because no one behind me to bump the seat. Hope some of that helps...I am very worried about my next plane ride because it will be with the baby and a lot of my methods for dealing with and preventing the pain will be out the window.
Out the window? That is a long ways down! GRIN

Hey, thanks so much. that input is so very valuable to me. Do you find that the added pressure of being up in the air that high to ramp you up and keep you ramped up during the flight? Again, thanks!

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Old 03-04-2016, 12:58 AM #4
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I have traveled by air a lot (before CRPS but with a quadriplegic child as well as 4 'normal
children)...only twice since the CRPS (and both were before I was diagnosed)

I agree, pre-boarding is important. Also, a lot of airlines and/or airports will provide assistance transporting you (and any carry on) to the gate.

With my son, we always sat in the bulkhead...mostly because he was a spastic quad and would kick...constantly. But it was also easier because we didn't have far to get on/off the plane.

Going through security can be an issue if you have any pain pump/SCS, so make sure you bring the device card and show the TSA agents. My son always bypassed the scanner & went to a screening room.

As for the flight: my carry on's have always been a small bag with my purse and medication in it and a pillow with a throw blanket in the pillow case. Most airlines allow an additional carry on for medication/equipment. You can also request medication bags be inspected rather than x-ray'd and are allowed more than the '3 oz' of liquid medication (& don't have to baggie it), Make sure to let TSA know about it before going through the scanner.

I wear comfortable slippers and make sure to do as much ROM and small movements in your seat as possible. I also sit in a window seat, but that's because I like to plan which trees to fall on.

I am not sure if it was my first flare or if the air travel affected the swelling/discoloration when I flew before diagnosis. I was very apprehensive flying back but all went without any further problems. As a matter of fact, I experienced more pain traveling by car from LA to Reno.

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Old 03-04-2016, 02:10 AM #5
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Originally Posted by Always_Believe View Post
I have traveled by air a lot (before CRPS but with a quadriplegic child as well as 4 'normal
children)...only twice since the CRPS (and both were before I was diagnosed)

I agree, pre-boarding is important. Also, a lot of airlines and/or airports will provide assistance transporting you (and any carry on) to the gate.

With my son, we always sat in the bulkhead...mostly because he was a spastic quad and would kick...constantly. But it was also easier because we didn't have far to get on/off the plane.

Going through security can be an issue if you have any pain pump/SCS, so make sure you bring the device card and show the TSA agents. My son always bypassed the scanner & went to a screening room.

As for the flight: my carry on's have always been a small bag with my purse and medication in it and a pillow with a throw blanket in the pillow case. Most airlines allow an additional carry on for medication/equipment. You can also request medication bags be inspected rather than x-ray'd and are allowed more than the '3 oz' of liquid medication (& don't have to baggie it), Make sure to let TSA know about it before going through the scanner.

I wear comfortable slippers and make sure to do as much ROM and small movements in your seat as possible. I also sit in a window seat, but that's because I like to plan which trees to fall on.

I am not sure if it was my first flare or if the air travel affected the swelling/discoloration when I flew before diagnosis. I was very apprehensive flying back but all went without any further problems. As a matter of fact, I experienced more pain traveling by car from LA to Reno.


Great tips! Thanks. I have a very tough time letting my leg rest in the seated position. My feet can't rest on the floor for more than 2 minutes without me flaring up in a very pain filled way. Have you (Or anyone else on here) tried flying first class with CRPS? It seems there would be more leg room. Or is there a spot for a wheel chair to sit where my leg could be resting up off the floor?

*Imagine that, I used to love to fly! Silly CRPS. How dare it make my wanting to go cruising through the friendly skies more complicated?* (as he tosses a ping pong ball against the wall and catches it a few times)
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Old 03-04-2016, 02:17 AM #6
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Great tips! Thanks. I have a very tough time letting my leg rest in the seated position. My feet can't rest on the floor for more than 2 minutes without me flaring up in a very pain filled way. Have you (Or anyone else on here) tried flying first class with CRPS? It seems there would be more leg room. Or is there a spot for a wheel chair to sit where my leg could be resting up off the floor?

*Imagine that, I used to love to fly! Silly CRPS. How dare it make my life more complicated?* (as he tosses a ping pong ball against the wall and catches it a few times)
First class definitely has more leg room (and a much more comfortable seat). I have only flown first with my son (emergency surgery out of state & the airline decided since I paid hella $ for the tickets, we deserved an upgrade)

There's really not room for a wheelchair (as a matter of fact, those have to be gate checked and the airlines have what they call aisle chairs to transport from the gate to the seat). Maybe cold get a few smaller pillows in a carry on and use those ??? Your best bet may be to fly at an odd time and try to select a seat with no one next to it at the time of booking...maybe you could be able to put your leg up on the seat next to you. I have the same problem, with having my leg down...I can barely stand being in the car but I'm able to get my leg out further in a car at least.


I would fly to the grocery store if it was available to me...I love flying.
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Old 03-04-2016, 02:20 AM #7
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Quote:
Originally Posted by Always_Believe View Post
First class definitely has more leg room (and a much more comfortable seat). I have only flown first with my son (emergency surgery out of state & the airline decided since I paid hella $ for the tickets, we deserved an upgrade)

There's really not room for a wheelchair (as a matter of fact, those have to be gate checked and the airlines have what they call aisle chairs to transport from the gate to the seat). Maybe cold get a few smaller pillows in a carry on and use those ??? Your best bet may be to fly at an odd time and try to select a seat with no one next to it at the time of booking...maybe you could be able to put your leg up on the seat next to you. I have the same problem, with having my leg down...I can barely stand being in the car but I'm able to get my leg out further in a car at least.


I would fly to the grocery store if it was available to me...I love flying.

There are always piggy back rides to the grocery store.
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Old 03-04-2016, 02:22 AM #8
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Quote:
Originally Posted by Always_Believe View Post
First class definitely has more leg room (and a much more comfortable seat). I have only flown first with my son (emergency surgery out of state & the airline decided since I paid hella $ for the tickets, we deserved an upgrade)

There's really not room for a wheelchair (as a matter of fact, those have to be gate checked and the airlines have what they call aisle chairs to transport from the gate to the seat). Maybe cold get a few smaller pillows in a carry on and use those ??? Your best bet may be to fly at an odd time and try to select a seat with no one next to it at the time of booking...maybe you could be able to put your leg up on the seat next to you. I have the same problem, with having my leg down...I can barely stand being in the car but I'm able to get my leg out further in a car at least.


I would fly to the grocery store if it was available to me...I love flying.
Bummer, 4 hours with my foot down would really really be tough! How long was your longest flight (meant for Always believe and others too) with your leg down in the OWIE I want my Mommy position?
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Old 03-04-2016, 02:38 AM #9
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Bummer, 4 hours with my foot down would really really be tough! How long was your longest flight (meant for Always believe and others too) with your leg down in the OWIE I want my Mommy position?
3 hours. I'm seriously thinking travel by train next big trip. Amtrak gives discounts to disabled and companion. The roomette on a train would probably be more comfortable but a longer trip.
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Old 03-04-2016, 02:51 AM #10
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Originally Posted by Always_Believe View Post
3 hours. I'm seriously thinking travel by train next big trip. Amtrak gives discounts to disabled and companion. The roomette on a train would probably be more comfortable but a longer trip.
WOW! What a great idea! Do you charge for those? I'm going to have to take a look at Amtrak. I wonder how long that would take me!!!!
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