Travel
 

Hi everyone.

I'm going to be travelling for my sister's wedding next month. My journey time will be approximately 18 hours, door to door. I am taking two flights with a layover of approximately 1.5 hours.

I will be travelling alone and this is my first time travelling since developing CRPS. I have a window seat on the right side of the plan for each flight to protect my right side (CRPS in right arm).

I plan to bring tramadol and pregabalin. My pain doctor has said he will write me a note for the medications in case I have any problems. I have also ordered a medical alert necklace just in case something goes horribly wrong.

At home, I use microwaveable heat packs but I will need to get some disposable ones but I'm a bit sceptical. Do they really work?

I would very much appreciate any suggestions you guys have. I expect this journey to be challenging so I am looking for anything that might help even a tiny bit.

Kim

Kim you really need a short flight first. Mine was 4hrs and as the plane rose so did the pain. RSD is 44 on the McGill Pain Index mine went well over 50. I would suggest asking your doctor for strong sleeping pills. Take them about 1/2hr before you board and hopefully you can sleep most of the trip

My first flight on the way out is 10 hours. The second leg is only 1.5 hours. I've never taken sleeping pills and I'm a bit worried about taking them when I am travelling alone. This is not going to be pleasant, is it?

Kim, try not to worry too much (easier said than done I know) - anxiety and stress will exacerbate your CRPS symptoms on top of anything else.

A friend of mine has CRPS (one extremity) and went on a pretty normal flight - she didn't suffer any major problems. A little more pain than usual, and she took it easy for a couple of days afterwards, but otherwise it was ok. If this flight is something you have to do, and you have taken extra painkillers in advance and have something in standby you should be ok.

I would say to take a lightweight shawl or something you can put in a bag - the air con on planes always made me feel chilly pre-CRPS days! Also headphones with some calming music to block out the relentless noise of the air system and other people, along with a good book :winky: Set an alarm on your phone so that you can fall asleep if possible but know you will awake in time for landing. Also take some chewing gum - even if you don't usually use it - its great for coping with the pressure changes in your ears as you ascend and descend. Keep moving your feet and ankles gently and rotating your wrists to keep blood flowing, and ask the stewardess for a pillow or blanket etc if you need soft support for your arm.

Fearing the journey will only make it worse. You are taking the right approach in being so prepared though, and hopefully that will pay off.

Take care of yourself and I hope it goes well :)

Bram.

Thanks Bram. I'm not stressing too much. I'm just trying to plan ahead. Beyond that, it will be what it will be.

The shawl is a great idea. I would not have thought of that. Also the chewing gum. I might get proper headphones too. I usually just use cheap ear buds.

Meanwhile, my sister has been researching CRPS and crying. I think she will feel better when she sees me. She is seeing really severe cases but luckily that is not where I am right now.

:)

You're welcome :)

There's a make of earplugs specifically for plane travel and they work really well of you suffer from ear problems in the air (I do!). I only know that Boots used to sell them, maybe best to check online.

I think some of the online videos and stuff can be very upsetting, and are best avoided whether you're a sufferer or not. The worst case stories are very distressing, but then you also get people with terrible problems with diabetes and arthritis and MS and lots of other conditions. All have their extreme cases....sadly the bad CRPS photos do really scare the pants off most folk. I can't bear to look at them. I've switched off some potentially informative videos because of the appalling pictures. It's the same with charity tv ads that are too graphic - I just can't watch some things. I know they are happening to real people, but the images stick in my head forever.

It's nice when family or friends take an interest in finding out about what you have. Wish some of mine would! :rolleyes:

Have a good evening :)

Bram.

I've had to fly a lot since my RSD
 

HI KIM!
I have a big suggestion that I hope will help you. I don't know what airline you are flying and they all give different weight to requests, but call the airline ahead of your flight. I usually buy tickets on line and if you do so from Travelocity, Kayak or one of those discount sites and they allow you to select your seat, don't suppose that is where you will be sitting. My RSD is full body, so I need to stand and move, when my pain says I need to move. I ALWAYS request an aisle seat, so that another passenger doesn't trap me and keep me from getting up. I am fairly tall, so I need to get into the aisle to not be hunched over. Buying from a discount site doesn't secure your request for an aisle, only the ticket price and a seat. Ifyou can, buy Directly through the airline, they do secure your seat request. Otherwise, after a percentage of seat locations are secured/assigned, then its the gate agents who have the power to move you or secure a specific location. they can not even do that when you check in, at some airlines and its very frustrating to find this out when you show up for your flight.

Once you get your ticket purched, Then call them. some airlines have a dedicated phone line for people with a disability, i know United deos. Tell them you have a neurological disorder and that it affects your circulation and that it is excruciatingly painful. With circulation being an issue for clotting and stroke on planes, they will do what ever they can to accommodate you. When I sit with my legs on the floor and not elevated, the pressure builds up and I get this horriffic constricted pain, so I have to be able to stand and move. I have gotten stuck and not called in time to get them to address this for me and it worked out but it's really stressful not knowing you will be comfortable until you speak to the gate agents.

Because my right arm is my worst area, I bring a very soft bed pillow, it's really helpful in supporting my arm and giving me a soft thing to lean on. If you get in trouble with the number of items you are carrying on board, put your purse in your pillowcase, or something like that, just to board. I do it all the time. Make sure you have break through pain meds where you can easily reach them and once you get through security always get a bottle of water. You never know if the plane will load and then sit on the Tarmac for an hour and the flight attendants will be asked my the captain to stay seated. You need to be able to help yourself and reach and take meds without anyone helping if at all possible, but if you get in a bad spot, by all means, ask for help. I had a flight attendant bring me a small cup of water once while the plane was loading because I lost track of time waiting and was hit with really bad pain, earlier than I expected. SE was awesome but I honestly could have ended up waiting 1/2 had she not been so kind.

Mostly call the airline ASAP, most can flag you as a possible assist needs passenger and when you are out of your home element and have no control over the situation, being able to get help is a must and will make your flight a lot easier. And make sure you wear slip on shoes... It takes a lot longer to get through security with RSD, it does me. If your connecting flight is at a big airport that you are unfamiliar with, consider asking for a ride on one of those golf carts. 1.5 hours is a nice amount of time to change planes, but if your flight is late or you feel horrible, just ask. I am usually happy for the movement, but if you feel strapped for time, ask an attendant before you land and they can have someone pick you up and take you to your next gate. Flying is stressful already so your getting ready ahead of time and asking questions is a great idea.

I hope you have a great time at your sister's wedding
Soft hugs, Sylvia

Hi Kim,

One thing you might want to do is bring a couple of soft neck pillows.. they would work great for cradling your arm so it doesn't bump up against the window or rest directly on the arm rest. This also might be a useful way to protect yourself while boarding. I would suggest talking to the flight crew prior to boarding to see if it is possible to board either first or last so that you don't have so many risks of being bumped or otherwise jostled about.

Rather than pain killers you might consider an OTC cold medicine for the long flight, if it won't interfere with other medications. It should help you sleep and not have long acting side effects like sleeping pills can. I'm assuming this will be an international flight by the length of it? If it is then a glass of wine or a beer might just help you enough to relax on the flight and though doctors don't prescribe it (for obvious reasons) it has a profound positive effect on neurogenic pain including CRPS/RSD.

If you have an a device that allows you to play movies or books then a good inspirational movie might help you during the flight.. a couple of my faves are Soul Surfer & Hachi.

Most importantly RELAX and try not to get to worried about it before hand as that will surely make things more challenging. Having something so wonderful to look forward to at the end of the flight should help keep your spirits up even if there is temporary pain increase.

Best of luck and enjoy every minute of it!
Tessa

If you're far from the airport, it might be worthwhile to stay in a hotel (choose one with a heated pool) the night before.

I suggest pre boarding since you will get repeatedly jostled if you don't.

A down pillow is the best way to go IMO. Put your pillow in your carry on bag and only carry on things that are essential for the flight. Slipper socks, wear layers in case you get chills or too hot, bring a soft throw, meds, healthy snacks with protein, an e-reader or tablet to watch movies to distract you, and headphones ready to go with mellow music if you're sensitive to sound.

Lidoderm patches that are precut or Lidocaine cream are a good idea IMO. I also start a course of steroids a few days before flying which makes recovery time much less--a few days as opposed to several for me (with shorter flights).

DO NOT take sleeping pills like Ambien when flying--it just isn't safe.

As soon as you arrive, take a bath with Epsom salts asap. You could even pack a compress for the plane even.

I agree with all of this. I have flown 6 times in the past year (another two times coming up in a week or so)...all but one of those by myself. The first flight was definitely an adjustment but I think I have it down now. Here are my must-dos.

Pre-boarding is essential for me. When I get to the gate I check in with the airline employee there and ask them to check my walker (I take it all the way to the plane and then use a cane on board) and ask to pre-board because I cannot be bumped or jostled (I have RSD in my left leg AND my whole upper body from the waist to the neck including both arms and hands). They let me on before anyone else. I also am the last to get OFF the plane for the same reason.

I always request a window seat because I am less likely to get bumped. There will be a lot of people moving around the aisles...especially on a long flight like that...so the window seat was a good move.

I use the disposable heat patches you can get at the pharmacy...they are GREAT. They are so light weight and actually do put off a good amount of heat for 8-10 hours. I usually get the "neck" ones for my arms because they wrap around easily.

Lidocaine cream or Lidoderm patches are also great for me in helping with the pain. One tip though...if you use Lidoderm patches...wait until you are past the security checkpoint to put them on. I've heard sometimes they want to test the patch before they will let you through with it.

Be prepared for it to be cool on the plane...I always wear long sleeves and jeans and bring my own blanket. And make sure the air vents above you are turned off if air movements can flare up you pain (the put me through the roof pain wise).

When you first get on board, make sure you have everything you need as close as possible...but in the pouch in front of you for easy access before you have anyone sitting next to you. Trying to move in such a crammed space is very difficult without bumping something.

I have an iPod with my "pain mix" and earbud headphones. I listen to either my mix...which is what I listen to when I have flares and it calms me down...or a nice long book that I can lose myself in during the flight. I have this in the seat with me (usually under my blanket) and put it on as soon as it's allowed.

You will be okay if you plan appropriately and do the things you know you need to do BEFORE the pain gets outrageous.

Don't wear any type of patch until you get through security as Catra said. I've had the TSA insist on swabbing me and not allow me to remove it, so they're essentially lightly rubbing the most sensitive area of your body.

Hopefully your connecting flight won't be too tight? Otherwise you absolutely want to be the last off.

If you get to the airport early, you might want to check the cost of upgrading to first class. It's a fraction of the cost by doing it that way and the seats provide much better cushioning from vibration.

You're not supposed to use medical tape on Lidoderm patches, but if you do it lightly it's helpful to keep them in place.

Re; the lidoderm patches stay on much better if you use a little rubbing alcohol or tea tree antiseptic cleanser on the area first. I just put some in a spray bottle so that I don't have to rub it on and then let it air dry for a minute before applying the patch.

The compounded cream can also be formulated with Ketamine so you may also want to ask about that formula. Personally I have found that the effectiveness of either the compounded cream and the lidoderm works better with continued use so hopefully you can get some at least a few days before your flight.

Are you traveling into the US? If you are then I would also suggest going through looking for the line that handles persons with disabilities, it will require you to have additional screening but, at least in my experience, it is much easier than being pulled aside for same. Bonus.. that it usually has a much smaller line. It has also been my experience to have an easier time coming into the states (if that is your destination) than it is leaving.

Wishing you the best!

Thank you so much everyone! Your suggestions are fantastic. You have given me several items to add to my shopping list.

To clarify, the only prescription meds I have are tramadol and pregabalin. I don't have any patches.

Yes, I am flying into the US from the UK. I will have to collect my bags and go through customs between the two flights. The airline have been alerted that I will need assistance but I will confirm this when I check in. I will also ask if I can pre-board and will alert the cabin crew to my situation. I will also confirm my seat reservations and explain why these are essential.

I really appreciate all of the advice. This is the first time I will be travelling since developing CRPS. Getting all of your tips has put my mind at rest because now I know I will be as prepared as I can be.

You guys are the best!

:grouphug:

A lot of sufferers have no problem with the pressurisation. I really hope you are one of them. Have a good time.

I hope so too, Kev. Of course, if I do have a problem with it I'm just going to be stuck. I wish I had the chance to try a shorter flight first but I just haven't. I am going to by the matron of honour in my sister's wedding and it would be awful to miss that. So I suppose I will just have to take a chance.

I have about 10 days between the flight and the wedding. Hopefully that will give me enough time to recover.

Only found this site today & shocked to find so many like me:hug:

I'm planning a trip with a 13 hr flight & did a 'test run' a few weeks ago with a 2 hour flight. I survived, but only just. I wish I had found this site earlier- but so thankful to have found it now :)

I have PTCRPS of my cranial & facial nerves from a serious accident a few years ago. I have been in too much pain to do anything other than just trying to get thru each day. But I have now started to improve & trying to use my time to find ways to help myself, as no one cares as much as our selves.

The points given are fantastic & the 1 I would like to add is with the help of your Dr, increase your meds for a few days before, then taper off. I used ear buds & noise cancelling headphones as well. But I used them before my accident & I swear by them as they really do make a difference on the long haul flights- but make sure they are good ones.