[ali12]

Can anyone tell me their experiences of flying short haul (up to 3hrs) with RSD
My daughter has RSD in her left leg and right arm and the leg is really swollen
Her specialist says we will be OK to fly but I am worried about the effect flying may have on the swelling and I've also heard on other forums that take off and landing may make the symptoms (ie pain and hypersensitivity worse)
I'd be grateful for your comments - good or bad !!!

[dawn3063]

Hi Ali,
I just recently took a long flight. It was a 3 hour flight a lay over and then another 3 1/2 hour. Actually for me the take off and landings weren't bad. If you have a good pilot those are generally smooth. The problems I had was the small areas that you sit in now. There is practically no leg or arm room and when the person in front of you leans back there practically in your lap. If you can get a seat located right behind the first class section I believe that is the wall that divides the two that is the best place to be. You’re in the very front and no one can lean back into you. My suggestion is that you arrange wheel chair at your departure point and destination, pre board and have them reserve her seat next to a window and then you can sit next to her that way you can help guard her from people bumping and pushing into her. My husband sat next to me and I sat next to the window and it made me so much more comfortable. I also brought on my favorite pillow to place under my arm as that is where I have my RSD. The flight attendants are very helpful with extra pillows and blankets. Have her take her pain meds prior to the flight and always carry those on with you. Also if she has any Lidoderm patches maybe she can apply those to help with the sensativity.
I was quite sore after the flight. I think it was because I was so cramped in the plane and it is very difficult to get up and walk around. Best of Luck and if I can help with anything else let me know...
Many hugs to you and your daughter...
Dawn

[bassman]

I fly about four - five times per year for business. The combination of cramped space and altitude/pressure has made my RSD leg swell up big-time. When it is time to deplane, it is really sentitive.

Of course, everyone is different, but for me I try to exercise as much as possible while aloft, even if it is just a little movement. Anything is better and sitting totally confined for several hours.

If you normally take some kind of diuretic for swelling, make sure to time it for maximum effectiveness during flight.

Mike

[betsyherm]

Having taken a number of 13-hour flights in the past year, I can comment on a bit on this!

The biggest problem with flying is that there is absolutely no room in "economy seating." You're literally up against the person next to you, and there's nothing to be done about it. If you have the financial ability, business or first class would be a better arrangement for someone with RSD.

Swelling is also an issue, especially on a long flight. I wear long soccer socks when I fly (ok, I wear them a lot of the time when I'm not flying) because they act as compression garments and keep some of the swelling down.

My biggest problem with flying is boredom. Bring a good book!

-Betsy

[frogga]

Hiya

Hope you are all ok

I flew to and from Geneva and have done some long haul flights since RSD. I have found that people have always been very helpful. I do find that my pain does get worse because of the change of altitude and the air conditioning. I always wear long sleeves and long trousers because of the AC and eat lots of sweets on landing and take off. I tend to fly business class because of the extra room and because I am the pillow queen - I have to sit on my pressure cushion and then my arms and back are supported with pillows as are my feet - they let me take mine on as medical luggage. I would suggest going next to the window.

HOWEVER.. I don't know if Ali needs any manual handling. If she does it is far more sensible for you to help her than to get the airport to. I cannot transfer and have to be hoisted or lifted and they subluxed my shoulder lifting me onto the seat as one person took my knees, the other took my shoulders and they just threw me to the window so I would really advise NOT letting them manual handle you if you can help it. (We had to because though my carer can lift me there wasn't room for her to manouvre me along to the window and I can't be dragged across the seats because of skin breakdown).

I don't know if you will be taking a wheelchair with you, but if so I have found they are really good about it.
Oh make sure that Ali goes to the bathroom before you go on the plane because it is really difficult to get into the airplane ones.

Swelling. You can use tubigrip/ elevation (once the seatbelt signs are up Ali can elevate her leg) and of course things like moving the leg (if she can) to keep blood flow going is all good.

I tend to get dramatic colour changes when flying but figure it's just the altitude change - I suppose the opposite of HBOT!

Frogga xxxxx

[TerriM]

Hello ali12,
I am sure you heard RSD is different for everyone. I only had it in my left arm until March of this year and now have full body RSD. I have flown quite a few times since I was diagnosed with mine in 2003. The longest flight was to Europe which was an 8 hour flight. The majority of my flights are usually 4 hrs long. I noticed the pain increases, ( not so much because of the take off or landing but mostly the pressure) as does the swelling and since the airports have such intense searches I choose to not wear my tens unit anymore which I wear 24/7 on the international flights because it is such a nightmare. I do double up on the pain meds just before flight to help. I am heading to Eurpoe in Dec. and I am a nervous wreck worrying about flying for such a long flight because it will be my first long flight with full body RSD but I am sure it will be all worth it when I arrive. Try to get up if you can during the flight, as the others said it is good to move about and sitting next to the window is also the way to go, you avoid getting bumped by others. I do let the airling know when I am setting up the flight and I present a letter at check in, (from my Dr.) that way they will let your daughter board first and she will not have to hop over people nor will they have to be bumping into her. I wish the the best.
Terri M

[wakegirl]

last time i flew for 4 plus hours i had my doc write a letter re my disability and the gave me a seat up front with more room. im not sure they will be able to accomadate you but it doesnt hurt to give it a try

[ali12]

Thanks to you all for the replies - the one thing that does worry me is the fact that her leg is already very swollen - will flying make this wirse and if so by how much...?
If it does swell will it go back down once we land or will the return leg make things even worse
I'd sooner lose my money than take the risk though I'm sure it will be fine
Guess its just "first time nerves" - hopefulyy if this flight passes off uneventfully we can think about going on a family holiday soon !!!!

[bassman]

Originally Posted by ali12

If it does swell will it go back down once we land or will the return leg make things even worse

For me, my left leg is usually 30% - 40% larger than my right. After several hours in the air (I think the longest flight I have had was 5 hours) it gets up to about 50% - 70% larger then the right. Wear very loose shoes - slippers, velcro tie, etc. so you can easily adjust them as the size changes.

I usually get back to my "normal" swollen size in about 4 or 5 hours after landing.

Mike

[TinyDancer]

Originally Posted by ali12

Can anyone tell me their experiences of flying short haul (up to 3hrs) with RSD
My daughter has RSD in her left leg and right arm and the leg is really swollen
Her specialist says we will be OK to fly but I am worried about the effect flying may have on the swelling and I've also heard on other forums that take off and landing may make the symptoms (ie pain and hypersensitivity worse)
I'd be grateful for your comments - good or bad !!!

I was wondering how did the flying work out for your daughter? My ankle/foot swells so bad, it feels like it might just blow up. I am concerned about the change in pressure, and it's effect on the RSD. I also must keep it constantly elevated, and feel that would be problematic as well.