Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-05-2011, 11:19 AM #1
cndangel cndangel is offline
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Default Flying Tips or suggestions needed

Hi Everyone,

On Thursday of this week I will be taking a short plane ride (about 1 hour and a half in the air). I was just wondering if anyone has some tips or anything I should worry about before I go.


I did manage to get a letter from my doctor that says I have CRPS in my neck/right shoulder/right arm/hand for security. So they know I can not lift my arm and it can not be touched. My Doctor warned me though that they might not care and do it anyways... I can't believe they can touch someone even though they have a medical note not too. The thought of someone touching my arm scares the heck out of me. Chances are I won't need that degree of a check....but I know they pull every 5th person for a random check like that. I did call the airlines and they suggested I take the note and show it right away. Let's hope it works.

I will board the plane first and leave first... as I know they allow people with disabilities to board first and also I have my 2 year old daughter with me so they allow us to board before everyone else anyways.

Any other suggestions any of you have? Any concerns with taking medications in your carry on? Or anything else you can think of!

Thanks in advance,
Karen
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Old 07-05-2011, 03:51 PM #2
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Quote:
Originally Posted by cndangel View Post
Hi Everyone,

On Thursday of this week I will be taking a short plane ride (about 1 hour and a half in the air). I was just wondering if anyone has some tips or anything I should worry about before I go.


I did manage to get a letter from my doctor that says I have CRPS in my neck/right shoulder/right arm/hand for security. So they know I can not lift my arm and it can not be touched. My Doctor warned me though that they might not care and do it anyways... I can't believe they can touch someone even though they have a medical note not too. The thought of someone touching my arm scares the heck out of me. Chances are I won't need that degree of a check....but I know they pull every 5th person for a random check like that. I did call the airlines and they suggested I take the note and show it right away. Let's hope it works.

I will board the plane first and leave first... as I know they allow people with disabilities to board first and also I have my 2 year old daughter with me so they allow us to board before everyone else anyways.

Any other suggestions any of you have? Any concerns with taking medications in your carry on? Or anything else you can think of!

Thanks in advance,
Karen
Karen -

One thought is to just wear something sleeveless as you go through security. If that's not something you're comfortable wearing on the flight, you can always change in the first restroom on the other side of security.

Also bring multiple copies of the doctor's note: for as many check points as you will have to pass through on your journey and back, where screeners may want to hold onto the letter.

I don't know if Canada is using "advanced imagery" (x-ray images down to the skin) but if she is, be aware that bulky clothing is more likely to trigger an alarm. So if you can tolerate something "form-fitting" even for just the few minutes it takes to go through security, you are better off than not.

And at least in the U.S., passengers with special medical needs are entitled to pat-downs in private areas, with the passenger's option of removing some clothing so the pat-down is done "lightly" through a paper smock of some sort. But if someone may have go that route, s/he should allow extra time for getting through security, possibly as much as another hour. I know, not fun with a two-year-old. And speaking of which, the pat-down rules apply to little kids as well, so best they be dressed accordingly and told in advance what to expect, and that it's okay [which it isn't] and you'll be there the whole time, etc.

Finally, I would go on a government website to see what the current limits are in terms of fluid ounces (or ccm's) of anything liquid you can bring on board. No sense having to toss the juice boxes!

Mike
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Old 07-05-2011, 05:37 PM #3
hannah1234 hannah1234 is offline
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the best thing if you can.... wear a tight tank top and tight pants or shorts, so there is nowhere to "hide" anything and then they wont search you. I tend to de-cloth when going through security, it hurts in the meantime but it hurts 1 million times less than getting pat down or smacked down by security. Just make sure to wear clothes that are close to your body NOTHING lose, and not a skirt, and you should be good. Also, for me, I have rsd in my leg an arm shoulder neck all that good stuff, and I bring a pillow and blanket just to cushion my seat and all around me to make sure that there are no metal surfaces touching me. Also, when you get there to your gate, ask if there is a seat where there is an extra seat open next to you so you have more room. that always helps not being smushed... taking a muscle relaxer might help but I get bad muscle pain and cramps when flying and I HAVE to pick my legs up, so hopefully you fly with someone that can take care of you. SInce it is a short flight, you will be fine, just bring some music you can listen to, and drink lots of water because being on an airplane is as dehydrating as being in the Sahara desert. Mike has that card that he said that I am going to use next time, but I have never had problems with security when I wore minimal clothing because then they have NO reason to search you. I wear my normal sweater and sweats over some shorts and a tank top and go through that way! Good luck and let me know how it goes!
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Old 07-06-2011, 01:33 AM #4
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I have flown many times with RSD. Too much actually. Only one time the security touched me but I think it was cause they thought I could not walk. Otherwise I just go through the machine. I reserve a wheel chair before hand for to and from the gate. When you do this you don't wait in lines and the person helps you put all your items to get scanned. The security has always been nice too. Also you never know how far the gate is so it is better to get taken there.
I always bring a jacket or sweater. Next time I fly I will bring a small lap blanket. My last flight I was frozen it was so cold. I try to get up a few times during the flight. At the arrival I let everyone off and then I get off. I ask for help getting my bag up above and down.
Hang in there and have a safe flight
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Old 07-06-2011, 01:18 PM #5
Swatgen27 Swatgen27 is offline
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I have had to fly 10 times in the last 2 months and I have found wearing warm loose fitting clothing helps me alot. A wheelchair is a great idea because you will have an airport tenant that will be there to assist you and it also helps with security because the person working will have a visual que that you have a medical issue (I have found that strangers often have never heard of CRPS and therefore don't realize how delicate our effected limbs actually are).
Also, in relation to medications I always put them all in one ziplock bag and I place it at the top of my carry-on luggage belongings. I never put my carry-on in the carry-on storage compartments for fear of someone taking my medications so I make sure my carry-on is small enough to fit under my seat. I have had no issues with my medications in relation to airport security and theft/losing it. Hope you have safe travels.
Sarah
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cndangel (07-07-2011), fmichael (07-06-2011)
Old 07-07-2011, 07:36 AM #6
cndangel cndangel is offline
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Thanks everyone for your responses and tips! I take off today at 2:15. A bit nervous but I am sure it will go fine. Glad the trip is a short one. I also will have my 2 year old to distract me (and my hubby), so I should be fine!

I have my letter from my doctor ready and some form fitting close to wear. Wish me luck!

Take care,
Karen
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