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love2travel

Off To Croatia And Italy In A Week!

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My husband and I are flying to our house in Croatia in a week for three weeks then drive to Venice (2 hours from our house) for the last couple of nights. Managing with celiac is the least of my worries, unfortunately. My back/hip/thigh/calf/shoulders/ribs and so on (pretty much my body!) pain is at times unbearable. Was diagnosed with fibromyalgia by a chronic pain specialist last week - in addition to my back injury 3 1/2 years ago. Makes sense, though - we were wondering why my back was just not getting any better! So, although I am excited I am frankly terrified. From our door here to our door there is 30 long, agonizing hours (including driving, flights, layovers). No meds help (I've tried over 15 including narcotics, opioids, and so on) so I'm in trouble. Just started a new medication last week but it is not helping at all. Not sure what to do with that.

The longest I can sit is about 20 minutes (must stand in church, lie down in vehicles, lie on the floor to watch TV and often stand to eat). I know you can stand on planes but I cannot stand for prolonged periods of time, either. Believe me - I am so grateful we CAN travel but this really scares me more than before. We travel to Europe a lot but this is definitely the most pain I have ever had. Part of me wants to cancel but part of me is determined to do it. It is unfathomable right now to imagine myself doing this in just a week. The stress just thinking about it is weighing on me heavily and, of course, causing subsequent pain. :( My pain became worse after going off gluten 10 or 11 weeks ago - coincidence?? When I get on those flights I just have no choice - I am stuck on them.

I have stretches from my physiotherapist, letter from my doctor, massage booked in Croatia to try to be proactive but am still scared.

What would you do?

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Only 10 or 11 weeks ago ?

I don't think this is "fibro," I think this is still inflammation from being gluten intolerant/celiac and generally having an auto immune condition that is not being healed yet.

I have figured out a long time ago doctors have absolutely no freaking idea what so ever on what works with anything, as almost all of them do not recognize the food/mind/body connection, so don't bother going unless it is something that needs either an antibiotic, a splint or cast, or a scalpel. Even now if I get an injury, I am basically ****ed, won't be treated, and had better figure out how to rehab it or cope, myself, because the "medical" profession is just too bizarre at this point. Just because I am stiff or having trouble holding still, doesn't mean I let that have priority in what I wish to acknowledge.

I think of it as a sort of mind game, whereby I teach myself to ignore as much as possible how I actually feel physically at any given moment, and concentrate on what I am thinking, seeing, hearing, smelling, or otherwise. I can use endorphins from exercise or being excited or nervous to my advantage. I would not be looking at this as a 30 hour trip, but breaking it down into separate segments that I was expected to trudge thru, each with a little reward during it or at the end. Scenery! Fantastic View ! Music ! Birdwatching here ! At mile marker 20, can open travel snack bag and feed strawberries to my husband who is driving ! (you should have seen the look on this trucker's face who was running parallel to our vehicle on the freeway when I did this onetime. :lol: I should have held up a sign that said "Next Farmer's Fruit Stand, Davis, 15 mi." )

If I had to get myself feeling as good as possible, treating travel as a sort of marathon session of me vs. overall airline stupidity, <_< I would probably be very carefully eating and exercising at this point, going very, very low carb, fruit, nuts, vegetable, lot of water, green tea, ginger/tumeric, even fasting thru a meal or two, to see where I needed to calibrate.

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Thanks for the great advice. It is a good idea to think of it in chunks rather than 30 hours. The longest flight is 10 hours - that's a biggie. I wish I could do first class so I could lie down but it is over $10,000 so a bit much. :huh:

I still truly believe I have FM because of my symptoms and the specific testing the doctor did. But I also believe, as he said, there is a strong correlation between celiac disease and FM so I know it is related. He did all the tender points found on FM patients and I tested positive for them all. My back injury pain just does not get any better and it should have long ago. My PT, MT, acupuncturist and chiro all have felt I have FM for the last year or so. But it's true that we know our bodies better than anyone else.

I really, really would be thankful if my FM symptoms went away after being off gluten for longer. I know that it may be up to a couple of years to notice! Believe me, there would be some pretty major celebrating to do. Dumb stupid gluten! :angry: It is unreal how it affects people so differently!

Love your fruit stand description!!

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My one rule on long, uncomfortable flights/trips is never to look at the time :o Clock-watching just hammers home that you still have EIGHT HOURS left of this miserable flight so don't let yourself know how much time has elapsed and let the landing be a happy surprise :)

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My one rule on long, uncomfortable flights/trips is never to look at the time :o Clock-watching just hammers home that you still have EIGHT HOURS left of this miserable flight so don't let yourself know how much time has elapsed and let the landing be a happy surprise :)

That is an excellent point. Just like sleeping at night - I have something in front of the clock so I cannot see what time it is.

If only I could sleep on planes but I never have been able to do it, even with sleeping pills. But I do have some very good books! And my husband is very interesting company (although he CAN sleep on planes).

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Yep, a page turner of a book(or two on my last flight) is an absolute necessity, plus a couple of cryptic crosswords :P. And now hubs and I never sit side by side but instead he in front of me. That way the jerk in front can't plop his seat all the way back on me (I have to sit straight up) and block the light to my book, not to mention taking up all my space :unsure:

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Yep, a page turner of a book(or two on my last flight) is an absolute necessity, plus a couple of cryptic crosswords :P. And now hubs and I never sit side by side but instead he in front of me. That way the jerk in front can't plop his seat all the way back on me (I have to sit straight up) and block the light to my book, not to mention taking up all my space :unsure:

Great idea! Thankfully (I forgot to mention this earlier) we secured emergency exit seats and bulkhead seats for most of the legs so at least I can stretch out and no one is in front of us. Plus there are just two seats together rather than three. That will help, too!!

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Mp3 with a couple of audible books.. James Herriot is my favorite. Huge distraction if you can't hold a book standing. I will just throw this in... my stiffness and soreness increases with carbs and sugars. If I eat raw veggies and small portions of fish or fowl.. then I am very much less stiff and sore than if I eat rice, potatoes, fruit, and gluten free flours.. they all give me trouble if I eat too much. (Is everyone like that.. and I haven't read it yet..?)

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Hi,

I bring a lightweight crochet project, like a zigzag scarf or a light summer shawl project in baby alpaca or very light cotton/silk (so it doesn't weigh too much) along with a bamboo or plastic hook. I pull out my crochet project at the airport waiting area, during the flight, and during the evenings while on vacation.

Word-search puzzles are a great time-passer for the flight. Not cross-word puzzles, because those take brain power. Word-search puzzles are usually easy, entertaining, and each puzzle can take 20 minutes! Get them in large print so your eyes don't get tired.

I second the talking book idea. I highly recommend something that is fun and lively.

For the inability to sleep on the plane: sleeping pills, like Nytol or something.

For the joint and muscle pain: get your hands on several tiny jars of Tiger Balm in Canada, and slather yourself with it every night. In Croatia, they sell a type of over-the-counter pain killer called Voltaran. It is powerful stuff...but weirdly doesn't make you drowsy. Maybe pop into a pharmacist shop in Porec and get some...and use it if your pain is really bad.

My first 2 years of going gluten-free was a roller-coaster ride. I had new pains, old pains, weird pains. I never figured out what was causing any of it. I think the body just needs to detox, heal, detox some more, heal up, go into denial, fight, then finally make peace with the 'new normal'.

Try to enjoy yourself. The weather in Istria has been beautiful: 18-22C temps, sunshine, all fruit trees already setting fruit, and cherries expected to ripen in just 3 weeks. Oh, and the salty sea air..can't forget that.

On a completely different note: maybe make your european gluten-free experience work for you. Keep track of your difficulties and your successes in detail, and when you get back to Canada you can write up an article and contact your local newspaper to see if they want to run it. I'm betting they will seriously consider it.

Hope that helps a wee bit...

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Mp3 with a couple of audible books.. James Herriot is my favorite. Huge distraction if you can't hold a book standing. I will just throw this in... my stiffness and soreness increases with carbs and sugars. If I eat raw veggies and small portions of fish or fowl.. then I am very much less stiff and sore than if I eat rice, potatoes, fruit, and gluten free flours.. they all give me trouble if I eat too much. (Is everyone like that.. and I haven't read it yet..?)

Oh, I LOVE James Herriot (Alf Whyte). A few years ago we vacationed in the Yorkshire dales and moors, in the middle of James Herriot country and had a fantastic time. We were in his surgery in Thirsk and saw where he and Helen were married. His books are absolutely amazing, aren't they?

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Hi,

I bring a lightweight crochet project, like a zigzag scarf or a light summer shawl project in baby alpaca or very light cotton/silk (so it doesn't weigh too much) along with a bamboo or plastic hook. I pull out my crochet project at the airport waiting area, during the flight, and during the evenings while on vacation.

Word-search puzzles are a great time-passer for the flight. Not cross-word puzzles, because those take brain power. Word-search puzzles are usually easy, entertaining, and each puzzle can take 20 minutes! Get them in large print so your eyes don't get tired.

I second the talking book idea. I highly recommend something that is fun and lively.

For the inability to sleep on the plane: sleeping pills, like Nytol or something.

For the joint and muscle pain: get your hands on several tiny jars of Tiger Balm in Canada, and slather yourself with it every night. In Croatia, they sell a type of over-the-counter pain killer called Voltaran. It is powerful stuff...but weirdly doesn't make you drowsy. Maybe pop into a pharmacist shop in Porec and get some...and use it if your pain is really bad.

My first 2 years of going gluten-free was a roller-coaster ride. I had new pains, old pains, weird pains. I never figured out what was causing any of it. I think the body just needs to detox, heal, detox some more, heal up, go into denial, fight, then finally make peace with the 'new normal'.

Try to enjoy yourself. The weather in Istria has been beautiful: 18-22C temps, sunshine, all fruit trees already setting fruit, and cherries expected to ripen in just 3 weeks. Oh, and the salty sea air..can't forget that.

On a completely different note: maybe make your european gluten-free experience work for you. Keep track of your difficulties and your successes in detail, and when you get back to Canada you can write up an article and contact your local newspaper to see if they want to run it. I'm betting they will seriously consider it.

Hope that helps a wee bit...

Hi, Gabby!!

We've been checking several webcams around Istria daily and have watched the progression of trees leafing out, etc. with pure joy. The weather seems just perfect! I am pretty heat intolerant but at least one can escape the heat in the sea or our stone house or the trees...

Great suggestions. I do lots of counted cross stitching on linen but that would be impossible to do on flights because I have about 200 thread colours in one large project alone! I really must learn how to crochet or re-learn how to knit.

Sleeping pills do nothing for me on planes, I'm afraid. I've tried Rx ones, Melatonin, Nytol and so on and they do not help. It's mostly because of pain and discomfort plus I have never been able to sleep sitting up. I wish I would have asked for Ativan to relax me but I didn't. My doctor is away now for a month so that won't work. :(

I haven't tried Voltaren for awhile - would be willing to try it again. I'll see whether I have some left here - if not, will pick up in Porec.

The more I read posts the more I realize that Celiac can affect people so differently and for varied periods of time. My pre-existing condition (i.e. accident with herniated discs and so on) is hard to take in addition to all the other stuff. I would give almost anything to alleviate my constant pain. :blink: Your description of old pains, new pains and weird pains exactly explains it. I initially chalked it up to my injury but now am convinced it is celiac related.

Love your idea about our local paper running a story on celiac in Europe! I enjoy writing, too. I journal extensively on each trip anyway but have not considered writing for a publication.

Your telling me about the trees and salty sea air does help! If only I could just be there and skip the travel. Our last trip was so brutal physically that I was moaning on the planes and quietly crying as I could not handle the pain. One flight was so turbulent that we had to remain seated with seatbelts fastened for ages and I could not walk around. That almost did me in. And what bothers me is that my pain is without question worse at this time. That is what scares me so much. I was doing so well with fear avoidance until the trip became closer and closer and now my fear overrides my excitement. :( Once we are there I will be ok. As I am always in pain I would rather be in pain in Europe than here! :P

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[quote

Oh, I LOVE James Herriot (Alf Whyte). A few years ago we vacationed in the Yorkshire dales and moors, in the middle of James Herriot country and had a fantastic time. We were in his surgery in Thirsk and saw where he and Helen were married. quote]

sighhhhhhhh :rolleyes: someday....

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Love2travel, I know what it's like to travel long distances and in pain. It's not fun, I have found that with my Fibro I can't eat soy or the nightshade vegetables. They cause a lot of pain for me. Have you cut those out of your diet. If not give it a try. My pain took about 6 weeks to ease up after I took those out. My back dosen't cramp and spasm or go numb anymore. Give it a try and see what happens.

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Love2--

For you--an explanation of the difference between fibro "tender points" and myofascial pain and trigger points, written by the woman who wrote the book on fibro, literally.

I suspect your pain (much like mine) is not necessarily FM, which involves just muscle --not pain in shins, feet, joints, bone, ribs---but trigger points and tightened facsia --definitely connected to celiac and nutritional deficiencies (B-12, folate, D in particular) caused by the leaky gut and flat villi. I have researched this for 3 years and see that many people are Dxed with fibro, when in fact, they are celiacs with severe bone/joint/muscle pain from injury or lost muscle tone and muscle mass.

Like you, every thing I tried --all therapies, meds, supplements, narcotics, sleep aids---did NOTHING.

I am hoping that healing from celiac will provide less systemic inflammation and better relief from PT ,etc. My PT, chiro, MT all seem to think so. :)

In the meantime, I am happy for you that you are traveling and offer this article to shed some light on what MAY be perpetuating your pain. I like to think we can recover more mobility and suffer less constant pain as we heal the intestines and stop the toxicity in our bodies. Just a thought.

Have a Safe journey! Enjoy!!

http://homepages.sover.net/~devstar/TrPs_and_TPs.pdf

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