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Joselita · 09-08-2007, 02:29 PM

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