[ali12]

Hi - its Alison here,
You will probably be aware that my mum recently posted a message on this forum about RSD and flying.
We are due to go away on holiday a week on Monday, however I dont really want to go due to a number of things. All of my family are trying to persuade me to go. All of the doctors are saying I will be fine but theres a nagging thought at the back of my mind saying what if I get worse?, What if I dont like the flight there, how would I get home?
Can you please tell mr your experiences of flying - good or bad
Its just I dont know what to do for the best
Love and Pain free hugs
Alisn
-x-

[Joselita]

Hi Ali,
I have flown quite a few times since getting RSD. In fact, I had never flown until AFTER having RSD. I travel every year from Alabama all the way across the country to Las Vegas, Nevada to spend Christmas with my family. I just flew back from Las Vegas on August 28....so you can see, I wind up flying a bit.

My advice about flying is; try to make sure you get an Isle seat if you have RSD in your lower body...and maybe if you have it other places as well. I ALWAYS get an isle seat, because it makes me able to move around a bit more than if I was scrunched up in the middle seat, or up against the window. I prefer getting on the side of the isle where I can stick my right leg out if I need to (it is the RSD one), and to help keep it away from the people sitting next to me. I will see if the flight attendants are coming up & down the isle, and can move my leg/foot to keep it out of their way (Not a problem since I can’t fall to sleep on flights. Can’t in the car either. Never have been able to, and don’t know why. LOL)

Also, DRINK LOTS OF FLUID!!! I usually have some pretty sever swelling issues after flying (gets worse afterwards too...don’t know why), but my new Pain Doc told me that wouldn’t happen if I drank LOTS of fluids. More than the bottle of water that I usually have with me on the plane, and getting a drink every time they come around to offer one. SO, I made sure to drink LOTS of water the day before and of my flight. I still had my water bottle with me, but I wound up drinking the whole thing on the first leg of the flight, another 2 at the airport waiting for my next flight, and one more one the last leg of the flight home. I also got something to drink shortly after getting out of the airport. Guess what? NO Swelling problems!! Maybe only a little bit...but not anything near the elephant ankle/foot I usually wind up with!!

Take your pain meds with you in your carry on. Put them all in a big zip lock bag (I don’t know how your airport security is there,,,,but we have to put just about EVERYTHING in zip lock bags here). Every Airline that I have even flown on advises to keep any medications that you need in your carry-on so that you are sure to have them in case your luggage gets delayed of lost. Take your meds ON TIME. You might talk to your doc about your up coming trip and see if he will allow you a bit more Break Through meds (If you take them....or allow you to have some if you do not) so that you can get through the trip.

I also make use of the pillows that they have on the plane. I use them to help mostly with my back (I have RSD there [from too many SCS surgeries] but also have other back troubles on top of that. One can flare the other up [usually the other troubles flare the RSD] so I try to keep my back as happy as possible), for lumbar support. But, I have also used them to help cushion my foot (where my RSD originated) if I am having more troubles than normal from the vibrations, or if there is a bit of turbulence.

Turbulence sucks. I can’t say anything more than that. I have been very lucky and having had it too bad on many of the flights that I have taken. But, when it does jerk you around....well...nothing much you can do about that. When the pilot says “We might encounter a bit of turbulence...” that might be time to take your BT meds (if you have them).

Take offs are generally alright for me. The landings only bother a bit if the pilot bounces the plane. But, that hasn’t ever caused me too much trouble....don’t know why. Maybe I have been lucky and haven’t had many bad pilots??

Oh..one VERY important thing; DON’T use up all of your “spoons” (which means energy....or whatever it is that makes us be able to do things that are exhausting or might cause a flare or whatever). BE SURE To make use of the wheelchairs at the airports. I haven’t ever had them wheel me INTO the airplane, but I have had it arranged where they are waiting at the gate with a wheelchair for me when I disembark. I use the chairs to get through the airports without causing myself more pain than I would otherwise. Some airports here not only have wheelchairs, but also have big carts driven by airport personnel that will pick you up and zoom you quickly and pretty smoothly to your next gate. You and whoever is accompanying you should be able to ride it. They can even have a wheel chair waiting at your gate for you to use once you get there. I advise you to take advantage of all of the things that the airport has to make flying easier for folks with disabilities. That includes either getting a Pre-Boarding Pass or going up and asking when they allow people with small children or that need other extra help/time to get seated are allowed to board. This way, you don’t get jostled trying to get on the plane, finding your seat, and getting yourself situated. The only disadvantage to this (if you have an isle seat) is that you will have to be able to get up and allow the people that are sitting in the other seats to get to them. If you are traveling with family....they should be able to board with you, and hopefully you will have it set up that they are on the same isle as you, sitting with you.

Hmmm. That is all that I can think of for now. If I think of anything else, I will be sure to post it for you. One thing to keep in mind; you shouldn’t let RSD rob you of getting to do things with your family, or taking advantage of special things that come up in life. Be prepared as best you can, and realize that you WILL be more tired than the rest of the folks, that the trip WILL take a bunch of you energy (Spoons), but if you plane it out right, you can help keep that to a minium (as best you can). Also...once you fly to a destination, you will HAVE to fly back home. The other options would probably be worse and harder on you (like a super long drive...maybe even DAYS worth of car or bus or train riding, rather than the hours that it takes on the plane). So, you can’t go thinking that you can not fly back too. It kinda sounded to me that is what you were thinking/saying in your post? If I misunderstood, please forgive me.

OH! One other thing that I do when planning a trip that you might try if you still get them done, is that I try to get a block/procedure schedule for not long after I get back. That helps get or keep things calmed down too. But, blocks have always helped me (even still, after over 10 years of RSD)...so I know that I can do that. Usually. Right now, I am dealing with a New Pain Doc (my last one just up and left his practice here with NO notice to any of us patients) and have had a bit of trouble getting such a thing scheduled for a few different reasons. I am still supposed to be having them done....I just have to get someone to tell me WHEN. I am writing this off to everyone trying to get used to all of this new stuff.....and to my new doc not doing his own procedures and having to get another doc in on the whole thing....ARGH! LOL. Anyway....when it works out right, it has always helped me in the past.

Ok. That is really all that I can think of now. I hope that you find that you CAN go and enjoy this trip with your family, and not let RSD steal any more of your life than it has to. You are SOOO young! You have so many things left to experience! Don’t let RSD define WHO you are. It is only something that you have...not something that has YOU!

Lots of love and
Jose

[JOAN_M]

excellent advice from jose ..... and i agree, go! don't let your rsd own you, you own it and you tame it!
oh and i have flown, and i did have some swelilng, but all in all no worse than any other day. pre medicate yourself. i do that even with long car rides ... unless i'm driving! LOL joan

[tayla4me]

Hi Ali,

I agree with the others.
Don't let RSD stop you being as normal as possible. The benefits from a change of scenery and a holiday will far outweigh the possibility of some increase in pain in the short term.
Make yourself comfy, tell your RSD that it isn't the winner here---you are!
Take care
Tayla

[ali12]

Thanks everyone for the responses - you have echoed my sentiments exactly - RSD should not control our lives and we should try to maintain as normal a routine as possible !!!!
That is easy for me to sat though as it is not my illness - it is Alison's and I'm very aware of her concerns. Her psychologist has advised us to take these on board and make balanced decisions once we have weighed up the pros and cons of travelling by air.
I think the main worry stems from the swelling
When Alison's leg first swelled up it happened overnight - normal leg one minute, 50% larger the next. It affects the whole of the calf, ankle and foot
The Hospital admitted her almost immediately and ran tests for blood clots and compartment syndrome - though they did explain that these were extremely unlikely
Everthing turned out negative and we were assured that it was just the RSD playing yet another trick on her body but that fear has stayed and grown as we get closer to the day of the flight (17th Sept)
I don't think it is helped by the fact that her grandad and aunt both have a history of blood clots
To explain more fully, Alison has RSD in her left leg and right arm but only the leg is affected by the swelling at the moment
Alison is virtually unable to walk so will be transferring to and from the aircraft by wheelchair
Her movement in the leg is limited and because of extreme hypersensitivity and as such she cannot wear compression stockings (maybe she could on the higher level of the calf but definitely not on the foot or ankle)
Her Consultant has told her she is fit to make the trip but that hasn't eased her worries about how the flight will affect both the pain, and particularly the swelling
The flight is 2.5 hours and we are travelling back 3 days later - I think another concern is how long will it take for any flare up of symptoms to subside once we land and if it is too bad on the way out how would we get back home !!!!
I would sooner delay the trip (but would this resolve the fears???) or cancel if Alison does not feel confident enough to fly - but then I feel that somehow the RSD has won yet again and it already affects our lives so much anyway
I know everyone is different but your advice really helps - especially those of you who have swollen limbs and cannot walk who frequently use air-travel
I really wanted to use this trip as a test to see if we could make a long-haul trip to Florida for Ali's birthday in February 2008
Many thanks again
Andrea

[ali12]

Bump up to top please.
Many thanks
Alison

[frogga]

Hi Ali

I'm Frogga, I'm 21 and from the UK and have full body RSD and am in a wheelchair. I just wanted to say that I have flown quite abit with my RSD and although it has caused some increase in pain it has not been too bad. I would say go for it! basically I always feel that it's worth giving it a go. You have travel insurance right? If the pain is too bad from the flight you can always come back by car or boat instead. Have you considered asking for something to make you sleep on the flight?

Hope you go for it and have a great holiday

Love

Frogga xxxxxxxxx

[wakegirl]

hey ali
i just flew across the us with a few challenges along the way. first, i stayed at an airport hotel so i would be close ofr my early morning flihgt. i cant set the alarm with my messed up hands so i called the front desk 3 times to ask for a wake up call they forgot. i woke up 30 min before my flight was scheduled to leave rushed to the airport told to go through security and try to make the plane. since i was so late no wheel chair was available so i had to walk. security took an 1hour and 30min. when i finally got to the front the tsa guy said oh you should have just gone through the first class line because that is where they will have to deal with you. so i go over there the do the who i am going to touch you here and here and hhere and here thing. have way through i said i used to be a cop i understand just do your search and get on with it. needless to say i missed my flight in a big way. they scheduled me on the next flight with a connection at the end of a terminal where like 5 ramps are all really close together. annoyed i put on my mp3 player and read one of those rediculous only in the airport to keep you entertained people magizines. while i was listening to music and reading they moved my gate number a few over. not to many people moved around so i didnt really notice. when it was time for my flight i went to the little desk and asked if it was running llate she said...no huh that one left 10 min early from that gate over there. by this point i am fully annoyed and reay to pick up mu stuff and go home unfortunately my bag was already on its way. so i called my brother who thank god lives in town and asked him to come to the airport to help me out (he is 6'4 weighs 220 iam 5'3 wheigh 100) because i couldnt walk anymore. anyway he went to the ticket agencies all of them that had flights to where i needed to go and came to the conclusion that paying 4-8 hundred dollars extra to get in that night made no sense when the original airline would wave my missed flight fee because of the security problems and get me out mid morning arriving early evening. (he may be my younger brother but some times he is my hero. i spent the night at his house watching he and his friends play vollyball at the park and they were all very sweet and talked to me for hours. he and his dinner cooked a devine dinner and i arrived at the airport the following morning right on time. the second time around the security person understood that i had participated in this silliness before and judt did what she needed to do.
the best part for both flights the guy at the desk the previous day had set it up so i was in the isle seat in the bulkhead row (so i had more leg room). it was wonderful.
the trip was a challange and more than one i thought about just giving up and going home but seeing the smiles on my family members faces was worth every moment of challenge.
flying is always a painful process but if you work with the airline for a wheelchair, bulkhead row isle seats...it really isnt that bad
just make sure you take a few extra pain meds in case the journey ends up taking longer than expected,
i have been away from home for 4 days and honestly in that short time i have managed to have more fun that i have in the years of being trapped up at home