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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)

Flying with RSD

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Unread 04-06-2011, 12:12 AM   #11
Jo*mar
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I think you usually can request a seat with more leg room, and it doesn't hurt to ask ahead of time about accessibility options, like a foot rest.

The sooner you book the flight the better chance of getting a preferred choice. If you do it online you can usually see the plane's seating layout and which seats might be taken already.

My dd flew to NY and her bf got her a front row seat with plenty of leg room, just so she wouldn't be crowded.
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Unread 04-06-2011, 04:28 AM   #12
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I can no longer fly due to the harsh pressure. My doctor said that my RSD has already so much pressure on my spinal cord and when I fly the pressure gets so much high at the base of my neck right below my brain it causes me to become paralyzed to where I cant move or speak at all. I basically cry, and become so low in oxygeon that I pass out within 1 hour. If I was needed to fly in anyway I have to use air ambulances or if its commercial I fly with either 2 nurses or 2 emt's which they put in on an IV and completely sedate me and keep me on oxygeon then when we land an amulance transport me to the hospital for about a week or until the pressure releases. Due to all those complications I havent flown in 3 years, instead my mom drives every where we go whether its 20 miles or 3,000 miles when we go home to Alaska for the summer to spend a few months.
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Unread 05-26-2011, 11:28 PM   #13
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Default Rsd and flying

Having had RSD for many years, I avoid any air travel I can.
Ten years ago (not from flight) my feet were so swollen (top of feet swollen over end of toes)------both feet literally broke, I never stopped walking however--never will. Suppose I should never say never but am even walking now with both ACLs torn in half---docs go how? Partial tears take big athletes down screaming. Suppose it only speaks to how horrid RSD pain really is---may sound strange but I enjoy a few good bee or wasp stings
as are what I call distractions and with RSD, you know, we need distractions. I do not advocate other pain ---I am not a masochist.--------My current doc re--RSD advises no flying at all for me. I can hike, bike---but to merely get legs vertical, they turn blue, then almost black in 2 minutes. I can not stand still while a bag of popcorn pops, so just sitting in a plane is not good but it is the altitude, pressure changes that do me in. A flight from Austin to Houston or Dallas (little alt.) no harm, flying to NY--have thought large athletic calves may explode. I did last 2 trips (3-4 yrs ago) to NY wear high quality (expensive)
compression sox (hate using word hose for me!!) and did better. I arrived always 2 days early of an event, so could wear shoes etc. 10 yrs ago, went 18 mos w/o shoes, then found a pair of velcro closure size 18 flip flop--I barely got them velcroed. When all calmed down, my shoe size was 4 full sizes larger, was then a doc finally x-rayed as could not occur w.o breaking. 2 yrs later-fell off barn and really busted up rt foot, leg--broke back (8th vert I've broken in back + I've broken neck twice playing ball-c6-c7, later c4)----well past any pain meds in any amount I was quite enthused about hyperbaric therapy at first as lon thought pressure played big role (and if helps you--don't stop-whatever works, works) but it is not answer to RSD.
My doc did clinical trial using hyperbaric years ago, moved on. Sadly, unsure the few docs really working on this--do so together---share info. I've had 5 pm docs spec in RSD tell me the SCS was of no value unless mild case or very early on but am aware of those it helps---I did trial yrs ago and helped some until vertical, would make one moreso never want to move--and key is moving. I often overdo it, pay big price----may learn one day!! When beyond all pain meds available, I've not taken an asprin in 15 mos, I only use doc's elec meds-----nothing like a tens unit which does not penetrate first layer of skin--again if helps--use it----i hooked up to 4 once, turned all to max--asked if I had them on? PTS sent nuts as yes all were on--at max-i felt nothing. Docs Vecctor *3rd gen mach out now, extremely high voltage, size of small luggage, computer-it reaches the cns!! and of course, the sympathetic nervous system is part of our central nervous system. Last thing on flying-----in reading all the comments, appears those with RSD in arms have less problem flying than those with it in legs or of course full body.
God's blessings to all.
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Unread 06-09-2011, 11:03 AM   #14
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There's going to be some who won't like my reply, but here's my advice. As a guy who use to be on aircraft all the time but then found myself suddenly disabled, I learned it's better to travel less but go first class than it is to fly coach but make more trips. Yes, there is a world of difference.

There are all sorts of ways we can earn frequent flyer miles that quickly add up. I have found that I usually only pay full fare around every 3rd trip if I'm careful and plan things out ahead. Once you're up front, the comfort and care go up considerably from the baggage check in - all the way to your much more comfy seat. Yes it's more expensive but not as much as you think. If you think that $20 to $50 more per hour you're in the air is a cost you're worth, then that's the only way to fly if you ask me. The additional care and attention given to first class customers is in a totally different league since that's where most airlines profits come from. No problems using the lavatory that's only being shared by a handful of clients who always have nicer manners and decorum. They don't lug all their possessions with them on the plane since there are no added charges for luggage (bet you didn't know that one) and of course there's a lot more room per person both in width and in legroom. The longer the trip, the more you'll be glad you made the switch. The days of Greyhound buses of the skies are over now that fares have gone up so it's time we either eat the higher ticket prices, drive, or just stay at home. Flying will never be easy as it once was, but it's also not as hard of chore when you've got a bit more attentive staff that really cares about your repeat business. Now go have a great trip!
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Unread 06-13-2011, 06:31 AM   #15
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Cool Going anywhere 1st class helps but.......

Quote:
Originally Posted by bobinjeffmo View Post
There's going to be some who won't like my reply, but here's my advice. As a guy who use to be on aircraft all the time but then found myself suddenly disabled, I learned it's better to travel less but go first class than it is to fly coach but make more trips. Yes, there is a world of difference.

There are all sorts of ways we can earn frequent flyer miles that quickly add up. I have found that I usually only pay full fare around every 3rd trip if I'm careful and plan things out ahead. Once you're up front, the comfort and care go up considerably from the baggage check in - all the way to your much more comfy seat. Yes it's more expensive but not as much as you think. If you think that $20 to $50 more per hour you're in the air is a cost you're worth, then that's the only way to fly if you ask me. The additional care and attention given to first class customers is in a totally different league since that's where most airlines profits come from. No problems using the lavatory that's only being shared by a handful of clients who always have nicer manners and decorum. They don't lug all their possessions with them on the plane since there are no added charges for luggage (bet you didn't know that one) and of course there's a lot more room per person both in width and in legroom. The longer the trip, the more you'll be glad you made the switch. The days of Greyhound buses of the skies are over now that fares have gone up so it's time we either eat the higher ticket prices, drive, or just stay at home. Flying will never be easy as it once was, but it's also not as hard of chore when you've got a bit more attentive staff that really cares about your repeat business. Now go have a great trip!
I am unsure you answered any questions, perhaps simply sold more 1st class tix. Thanks for the advice. No doubt anything that can make someone with RSD more comfortable is worth the $$$. Instead of sounding like so much as if ?? you still are employed by the airline industry, please explain in more medical or concise terms on; why to fly at all or versus alternative travel. "Never....easy as it once once,.......cares about your repeat business," somehow does not make me want to jump on the next flight (w/Ist class tix), in fact, it is rather discouraging! You do mention being disabled but not that you suffer with RSD/CRPS, maybe you are out of your league speaking here. Maybe not and you truly understand the pain of RSD, if so, tell it like it is------don't just upgrade tix! Thanks---Marty
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Unread 06-13-2011, 01:55 PM   #16
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Hi. I know that most of the terrible problems that some face on flights have little if anything to do with TSA security, but to the extent that enters in - as has been reported by at least one person on this thread - I would offer my related thread of today's date, TSA issues new Medical Notification Cards (Pat Downs, etc.), based on work I've been doing with the RDSDA. http://neurotalk.psychcentral.com/thread151877.html

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