CRPS in the Sun.Advice much appreciated xXx
 

Hi everyone. Im new to this site, and have joined in the hope of learning through other CRPS sufferers experience's.
My mam has had CRPS since around 5 years now, following an operation to have a plate put in her wrist, after she shattered the wrist in a fall.
I'm hopeing for a bit of help with a worry we have at this moment, and would be greatful of any advice.
In one weeks time, my mother and my stepfather will be flying off to Lanzarote for a week. This is the first holiday abroad since my mam's accident, and both she and I are a little apprehensive, and are doubtful weather or not this holiday is a good idea, due to her CRPS and the hot weather. Is this holiday likely to be more trouble than its worth? Is she likely to have a week of hell, rather than a week of pleasure and relaxation? I hate the thought of her being stuck over there with increasing pain, and foreign doctors who know nothing of her, or of her condition. xx

One touch of a sunray and my am feels as if it's been dipped in petrol and set on fire. If this is her reaction them it's definetly not a good idea. Has she flown since I did, never again as the plane climbed and the inside pressure rose so did the pain so bad I came close to walking into the sea rather tha flyig back.
The trouble is it affects all of us in different ways so others will tell you they have had neither of these problems

Thank you Kevscar
Every bit of info is much appreciated, so thanks for the reply.
I'm not sure how much the sun affects actually, the sun is a rarity here in Wales, so I'm going to have to quiz her on that one. I know that she keeps her arm covered from the sun, and also keeps it covered from the cold too.
Her arm feel's like it's on fire/burning, yet it's cold to touch. She try's to stay indoors if the weather is too hot or to cold, and that's what stated me thinking about her holiday,and how it would affect her RSD/CRPS.
I have been reading a few posts last night, and to be honest, my only concern was 'the heat', so I had not thought about the actual flight and cabin pressure. I understand it affects everyone in different ways, but now I cant help but worry after reading how pressure causes havoc with a person's CRPS.
I saw a couple of posts were people mentioned 'cabin pressure causing CRPS to spread', and one person had been warned about this by her doctor. Is this true? Or have you heard this before?
I'm thinking this holiday will be more trouble than its worth, but at the same time, I don't want her CRPS to put a halt on all of life's pleasure's,and prevent her from doing everything, as it's taken to much already.

Tricky one to be honest :rolleyes:

I did a lot of reading about heat and flying in the last few months as we were planning a 'proper' holiday this year for a special birthday (normally we stay in the uk). I must admit that I was put off the idea of flying when a friend of mine (with CRPS) had issues with pain from the pressure changes, and we ended up looking at the land options, ie trains and boats...it's amazing the places you can still go :)

We ended up going for a holiday within a decent boat trips distance, but we could have got to Italy in a day by train as well, which surprised us. Most of Europe is fairly easy to get to by train, and the costs are pretty reasonable - and the trains nicer/more punctual!

I'm not saying you shouldn't go by plane, especially if it's already paid for and your mum is looking forward to it. But be prepared for her to spend at least a day getting over the flight, and she will need to take extra pain meds all the day that you travel, and extra in case she needs it during the week.

I am ok in the sun as long as its not too hot, and I cover up. I use high factor sun cream, and wear light loose clothing over it. I can't risk burning, and my skin isn't keen on direct sun for long. Similarly, clothes help to minimise pain from breezes on my skin, which sounds insane, but is a common CRPS symptom.

Going on holiday is definitely a high stress activity for us I think. There are so many things to think of, and being away from your own home and environments that you know about is worrying too. Add to that the expectations people have, that you might not be able to live up to, and it can make enjoying ourselves even more tricky! We always try :winky:, but expect your mum to be anxious when doing anything new or going somewhere different.

I'm sure you will still have a lovely holiday, but sit down with your mum and ask her what aspects of the holiday she is worried about, and what you can do to help. It will reassure her and I promise you she will really appreciate you thinking it through from her point of view!! It's tricky being the one with the health problem - try as you might, you do feel that you are the squeaky wheel spoiling others' fun :winky:

Bram.

I think it really depends a lot on the following:

1. What types of things usually cause her flares? Just like anywhere else she needs to try and avoid triggers for pain flare ups and that can be harder on vacation...but not impossible.

2. Flying, going through the airport, travel in general can be very difficult and cause flare ups. It is important to make sure you are as prepared as possible for things like going through security, anticipating increased pain on the flight, pre-boarding the plane (I always ask once I get to the gate and we check my walker and I board before everyone else so I don't get bumped), try to get a window seat so she's less likely to get bumped, ask for a wheelchair at the airport if she doesn't have her own so that it's just that much less stress on her, bring a pillow and blanket for the plane ride to help make her comfortable, make sure you have all meds, etc. Lots of planning is involved but it can make a HUGE difference in how the rest of the vacation goes so it is worth it.

3. Just like with the actual travel...she needs to carefully plan out her time while on vacation. I don't mean down to the second planning of where she will be when...but more planning how they will use the time. Like a day of sightseeing, followed by a relaxing day at the resort or a beach day, etc. Balance is the key. She also needs to be realistic and honest with herself about her limitations. Don't let her push herself to the point of misery...stop before she gets there and don't let that get her down.

4. If she has difficulty walking (not sure if the RSD is just in her arm or elsewhere), keep in mind that she may or may not need a wheelchair/scooter on a day to day basis but on vacation it can be worth considering just so she doesn't overdo it and is still able to participate. So if you are traveling somewhere that maybe you can have a rental scooter or wheelchair delivered to (again...if she doesn't have her own since I don't know the details) then that might be something to look in to especially if they plan on doing a lot of sightseeing or walking around.

5. If being out in the sun is an issue, try to have back up plans on places they can go and visit that are indoors or have indoor retreats where she can go if the sun gets to be too much. I don't have issues with the sun with my RSD...BUT one of my meds reacts badly in too much heat. I know this and have to plan accordingly so that I am not overheated at all. This can be tricky...but try and do as much research as possible about places they are going to visit so that you already have plans in place on what to do if she has any problems.

6. Plan to bring layers of clothing for whatever situation you might see. Even when I go to warm places I have to wear pants and long sleeves because when it's hot OUTSIDE...it's usually cold INSIDE because people have the A/C cranked up...and the A/C is bad news for me and will trigger a flare if I am not dressed properly.

So don't avoid the vacation. It might sound like a lot of work but prepping on the front end can mean she will still get to enjoy a wonderful, relaxing vacation with minimal pain. We cannot stop living our lives and live in fear of our RSD. We have serious limitations and things we need to consider for our health...but at least for me I will not let my RSD hold me back. Can I do all the things I would have done prior to RSD? No...but I can still enjoy myself and have a good time on vacation. Your mom can too...but she just needs to be prepared and have plans in place for worst case scenario. And you know...when you are prepared for the worst it rarely ever happens...it's when you aren't prepared for it that it usually slaps you in the face and kicks you in the rear. Or at least that's how it always seems to me...

One thing you mom might consider is carrying a small towel or two that can be wet with cool water and placed on her arm if it gets too hot. I do this and once my limb has cooled down from the sun, I dry it off and place the wet towel in a plastic, zip lock type, bag.

Works wonders and extends my time enjoying my day outside.

As far as air travel, I hqve found that if I am able to move around the pressure change doesn't bother me as much as sitting still.

I hope this helps,
Best wishes,
Abbie

Traveling with RSD/CRPS
 

I find I can fly fine, while a good friend cannot fly but can drive.
There is hot RSD, and there is cold RSD.

So the point, is trying to figure out what her needs are.
I travel with homeopathic remedies that help, as well as clothing to keep my limbs covered, what my body needs.

If you can get you Mam to figure out what she will need, she will be fine.
It is too depressing to get left behind or to cancel a trip.

My husband's family lives 2 states away so he drives. I fly and meet up with him. A hassle, but I miss a major flare up from the road vibration!

There are great deal of things you need to consider, somebody mentioned going by train but in some of us the vibrations as it goes over the rail joints would be agony, I cannot have any material on my arm so clothing is no good to me. I have also had a spread caused by a sensitivity pin used 4ins outside the affected area and it started in both legs when my grandson trod on my toes.
I am also one of the 7 - 8% on whom any wound may never heal, flying Ant Bites still visible from 22 july 11 and 2 acupuncture wounds from 19Jan 2010

Great travel tips everyone. I have a family trip coming up in July. I'll sure be able to use these tips. Good thread. Next year we would like to take the grandgirls to Disney. At this time I can't see how it would be possible for me to participate. I am hoping I will be doing much better next summer.

One thing I would like to add. I use my light weight scooter that is FAA approved. I check it at the gate. I am able to ride it up to the airplane door. One of the luggage loaders then takes it from me and shoves it in the cargo area just before we take off. They have it ready for me at the next destination at the gate. I also pre board. I have never had a problem (knock on wood).

If you have any questions about how to plan for Disney World, let me know. This will be my third time going this year (my promise to myself when I got out of the wheelchair) in September and I have found a lot of things to really make it work for me even with my RSD. Disney World is one of the most accommodating places to travel to for people with disabilities. If you do it right there are actually a lot of places to rest and relax so you can go at a slower pace if you need to and still enjoy everything.