[ali12]

Hi everyone,

I just wondered whether anyone has flown in an aeroplane with RSD and if so, how did you react?

My mum has booked for us all to go to Las Vegas on the 1st March for 5 days and whilst I am really looking forward to the break, I am also a bit worried about whether the flying could potentially make my RSD worse.

I have flown in an aeroplane with RSD before but it was only for 2 hours and the flight to Vegas is nearly 11 hours. I didn't react too bad to the 2 hour flight however it did make my pain worse with the turbulance and the swelling became worse also.

Just wondered whether anyone had ever flown with RSD and if so, how did you react and is there anything that I should use/try to make the flight more comfortable and to prevent flares? I am REALLY looking forward to the trip to Vegas with my mum and dad as I need a break after everything i've been through but the last thing I want is to end up in a major flare so that I can't enjoy our time there!!

Any input is greatly appreciated!

Hi Ali,

Did your mum make a non-stop flight, or do you have a layover?

My sister in law used to be a flight attendant. I would meet her at the airport, she was very tired she flew international flights.

It is like 6x harder for even a healthy person to walk on the plane.

Make sure your ears are clear. A flight attendant isn't even supposed to work when having ear problems. I saw a prior post about your ears troubleing you some.

Las Vegas is alot of fun.

Much Love, Roz xoxo

[ali12]

Thank you for your help - I really appreciate it!

I will definitely make sure I get my ears sorted because we go on vacation - my mum is trying to book me into the doctors at the moment.

We don't stop over - we just have a flight straight into Vegas. They don't seem to do stop over flights that much from the uk and if they do, they tend to cost a lot of money.

Thanks again for your help!!

Dear Ali,

I do hope these lines find your pain levels down.

I live in California, about an hours drive from San Diego. Las Vegas is alot different than CALIF. Their is alot to do for young adults in Vegas.

Have you been to the States before?

My mum was English and my father American. I have flown back and forth alot myself.

My family are in Reading.

The weather in Vegas is lovely. You will barely need a cardigan, if that even.

If I had to pick a favorite airport, it would be Vegas. It's small also nice and clean.

Hugs, Roz

[ali12]

Originally Posted by buckwheat

Dear Ali,

I do hope these lines find your pain levels down.

I live in California, about an hours drive from San Diego. Las Vegas is alot different than CALIF. Their is alot to do for young adults in Vegas.

Have you been to the States before?

My mum was English and my father American. I have flown back and forth alot myself.

My family are in Reading.

The weather in Vegas is lovely. You will barely need a cardigan, if that even.

If I had to pick a favorite airport, it would be Vegas. It's small also nice and clean.

Hugs, Roz

Thanks again Roz for your kind words and help - I really appreciate it!

We have been to the States before. We used to go to Florida a lot when I was a baby and I absolutely loved it ... it is so cool and there is so much to do and see there!! We have been to Vegas once before and really enjoyed it - we have always said that we would like to go back again but never got the chance because of my RSD and my parents work.

We are hoping to try and go to the Grand Canyon this time. My mum wanted to go when we went the first time but my dad didn't want to go. I'm not sure if i'll be able to tolerate the helicopter though so that is a bit of a concern as I don't want to end up in a flare and not being able to do anything!! We are also hoping to try and see a few shows whilst we are there - I have heard that there's lots of good things to go and see and we are spoilt for choice!!

I'm glad that the weather is nice in Vegas. The weather was a concern for me also - my leg doesn't tolerate the cold very well at all so i'm very glad to hear that it will probably be warm whilst we are there!!

I hope you're doing OK and thanks again for all your help!

[DianaA]

Hi Ali,
Yes, I flew from New Mexico to visit family in Yorkshire. When we chose a flight we tried to pick one with the least time of layovers. Still, it was a 23 hour day. That was way long for me! We also chose an overnight flight so I could sleep the majority of the hours. Not being able to move about the plane was very difficult for me. My body hurts extremely bad when in one position too long. I did tell my doctor and was given sleeping aid to help with the flight. Lay overs and customs were trying to say the least. Sleep as much as you can, and move about, because limited space and lack of movement have an effect circulation. Try to keep a positive attitude, because stress also has an effect. You are young and I'm sure you will do well, with the proper planning. Which you have already begun! Vegas will be so much fun for you. Take plenty of Pictures, and enjoy sweetie! Love Di

http://www.golakehavasu.com/


Maybe if you have the time you can check out Lake Havasu.

[bassman]

Ali,

My case is not as advanced as yours sounds, but I have flown a fair amount both for business and pleasure. Most of my flights have been 1-1/2 to 4 hours long, but the length did not seem to matter much. It was being cramped.

My biggest problem, until recently, has been swelling of the lower left leg. Because of the pressure changes, my foot would swell quite a bit more than usual. I always wear velco-close shose so I can either loosen them or easily slip them off during the flight. Also, I would try to sit in a seat that would give me the best opportunity to stretch my foot. If I have to put my foot into the aisle for comfort, I would explain my situation to the flight attendants so they know why I am doing that and they can tolorate it. (It is generally against rules to block the aisle like that, but they give me leeway for medical problems.)

My swelling is worst when I have to sit for long periods. Being on the aisle seat allows me to stand once and a while, even if I don't walk around. This helps, too. Switch seats with the window person (if you can) once you get over the western US - the view is fantastic!

As I suggested at the beginning, once the swelling happened, it usually did not get worse with a longer flight -- just more time to deal with it. That's where a sleeping aid might help.

Finally, perhaps your travel agent can snag you an upgrade to a roomier seat, if your mum will let them know about your condition. If the tickets were bought directly from the airline, have her call the customer service department. (It will be a long time on hold, but may be worth it.)

I hope you love Las Vegas. It is truely a unique experience. Last time I was there, I had flu. I was miserable, but still had a good time!

Good luck and have fun!

Mike

[Mslday]

HI Ali,

How exciting for you to have the opportunity to get away. I travel all the time and I have a number of tips for you that should help you manage your RSD while flying.

First it is important that your parents request ground assistance from the airline. They should request a wheelchair for you, it does not matter if you don't need to use a a wheelchair regularly or not. The airlines are well versed on how to help people with disabilities and they know how challenging it can be for people who have any type of mobility issues. This will help you to get through all the line ups and security with minimal stress. An airport agent takes you through the whole process right up the the gate. They will also pre-board you and help you get settled on board the plane. When I came home from Germany this year following my surgery I did this and it really helped me, especially upon arrival in Canada when I had to go through customs and transfer to another flight to make it back to Vancouver. Pre- boarding also helped because I didn't have to worry about my leg getting bumped by all the crowds. It's really nice to to be able to get taken to the front of the line.

It is also important to understand the physiology of flight. Once the aircraft door is closed the cabin is pressurized. An aircraft planning to cruise at 40,000ft is programmed to rise gradually from take-off to around 8,000ft in cabin pressure altitude, and to then reduce gently to match the ambient air pressure of the destination. Because of this swelling can occur, even for those without RSD, many people frequently experience bloating and swollen feet but most peoples bodies are forgiving of these abuses. Flight attendants are advised to get uniforms that are 1 size larger for this reason as well.

I always take extra anti inflammatory medication about 30 minutes before the scheduled departure time and again about 45 minutes prior to landing.

Airplanes can be very cold and drafty so if you are sensitive to cold like i am you might want to consider taking a hot water bottle (empty of course) with you in your carry on bag. Once on board you can have the flight attendant fill it with hot water for you and they are happy to help. I think in England you have lots of hot water bottles with nice soft covers. They don't use microwaves on airplanes so you can't have those types of heating pads warmed up on board.

Be sure to drink lots and of water, at least 1 full glass per hour. I always buy a big bottle of water at the airport after going through security because there are times when I need water and the flight attendants are in their seats.

Avoid soft drinks because they can give you gas when you fly, juice is better if you like something sweet. Try to eat fresh fruits, I usually pack a couple of apples and a banana along with some nuts or trail mix.

If it is a longer flight I will take my sleeping medicine too and it does help me get some rest.

As you know it is important keep your rsd leg moving, you can do some exercise for your leg if you have to stay in your seat for a long time. Most airlines have a some exercises listed in their in-flight magazine or some have exercise videos if you have an on demand entertainment unit in the back of the seats. When the seat belt sign is turned off I will try to get up and exercise my leg, I do this while waiting in the bathroom line or going to the galley door areas.

It sounds scary to fly with RSD but as I said I do it all the time and I do ok overall, it can be managed. Don't worry too much about it, just follow some of the tips, find out what works for you and I'm sure you will have just as much fun traveling as I do.

Have a blast in Vegas.

MsL

[ali12]

Thank you so very much Mike and MsL for your suggestions ... I really appreciate them and will definitely follow the advice you have given me!!

From what I believe, after speaking to my mum, she has booked the seats that have the extra leg room that are at the front of the plane. I think they have about twice as much leg room as a normal seat so hopefully that should help as I can't bend my knee too much due to the pain and Dystonia.

We are taking my wheelchair with me as there is no way I could walk all the way round Vegas (I struggle enough short distances!!) so I shall talk to my mum and see if she can arrange for me to go onto the plane in the wheelchair to try and minimise any walking I have to do. When we flew to see my grandad in the beginning of my RSD journey, I was in a wheelchair and they were really good and got a ramp and hoist to get me onto the plane.

I'll also make sure I drink plenty of water to try and get rid of some of the swelling. I see my Physical Therapist's next week so will speak to them and see if they can suggest anything else that might help. My mum was also going to speak to my Pain Management Doctor to see what sort of medications I should take before and after the flight to try and prevent any flares.

Thanks again for all of your help - I really appreciate it and will definitely let you know how I get on flying with RSD and take some pictures for you all!