Tips for cruising with chronic pain?

[kellanrevere]

Thank you all for your replies, I really appreciate it.

 

I really appreciate what you brought up Enforcer, I do use some meditation and positive thinking to deal with it already. Up until recently it has been the main way I could cope with the pain. I think getting the parking permit will be a victory in some ways, because it's something I have been struggling to ask about for a couple years. Hard to ask for it when I couldn't find anyone to really admit I had a problem.

 

 

 

If I am honest with myself this is where I am at now. Ended up having DH pre-read my post on here because l have been struggling to actually voice my concerns about our trip. I don't like admitting that I need the help or that I can't do it. I am very overweight as well and combined it just kind of feels like a failure. I know I shouldn't look at it that way, and limiting myself in the process.

 

 

 

This is actually on my to-do list. I have been fighting the idea a long time because I am very uncomfortable with needles/blood draws/anything going into my skin from issues with getting labs done as a kid so it's something I haven't had the nerve to do yet. At the point where I am going to go suck it up and try it - and hopefully I can get the insurance to pay for a part of it. My mother has actually had success in the past with it, so I know it can be helpful for some people.

 

Jpcello, you brought up a great point. I had actually been looking at some of the scooters like the luggie last week. It's not something I can afford to buy outright at the moment (but it is something I want to look into.) I can actually rent a Travelscoot which is kind of similar to a luggie and I may decide to do that. I think if I don't rent a scooter I fill go ahead and at least rent a wheelchair.

 

I keep hoping I will feel better than I am and maybe the trip will be do-able without any help like a wheelchair or a scooter. Think I need to just stop hoping that I won't need it or worrying that I'll have paid for the rental and not use it. Needing and not having it would be decidedly worse.

 

 

I needed a scooter a couple of times a year while traveling so we rented. Each cruise cost me around $300 for one. After a few years I realized I could buy one for what I was putting into rent. Forget about insurance helping out, I have top notch and they wouldn't do anything. I watched Craig's List and found a practically new GoGo for $400. A scooter will save your vacation. Most of them break down easily if you don't have a HC cabin.

Travelscoot is what I eventually want but as long as mine is functional I'm not willing to spend the money. Someday.........

[Slugsta]

You have had some good advice here :) The only thing I will add (and it might have been said already, I only skimmed the previous posts) is to use your preferred walking aid (wheelchair, scooter, rollator, whatever) from the start rather than waiting until you are tired and in agony. The same goes for resting too - it is better to schedule rest breaks from the start to help prevent exhaustion.

 

I have to spend quite a lot of time resting on my bed. I have had people criticise this ("why spend all your time in your cabin? You can rest when you get home") but I know this is what I need to do to enable me to enjoy what I can do. You know your body and your needs, don't let anyone else tell you what you "should" and "should not" be doing! That applies to my advice too if it does not fit in with your needs :)

[sherilyn70]

I'm coming in late to this. But I have suffered from fms my entire life. I now have cancer on top of that. I can tell you that the pain that many others experience from other illnesses or injuries is not the same type of chronic pain with fms. Your problem is nerve and sensory related and not muscle or bone, so what many people may digest is often not the right way to handle this disorder. My pain from cancer is far different than the pain caused my fms and I can tell them apart.

 

I will share with you the things I have learned over the last 20+ years. For the most part it has been well managed because I established habits, routines and learned the triggers. Now keep in mind that just because it works for me doesn't mean it will, but it can be something to consider to avoid needing pain meds long term.

 

First and foremost, establish a steady and healthy sleep pattern. I always slept from 11pm to 5am on my schedule and as long as I stuck to that the pain was typically minimal.

Second, avoid stress. Mediation is helpful. Getting a massage (I know that sounds painful) can be helpful at heading off a full blown d flare up if you sense it triggering. If a headache starts I use zanaflex (a muscle relaxer) and Tylenol (you could use excedrin if your healthy) to cut it off at the pass. Do not let the pain get ahead of you.

Stay warm and avoid cold air drafts (ceiling fans, air vents, cold breezes etc) since they often trigger the ache.

Diet, cutting out sugar and focusing on protein seemed to make a difference.

Exercise, being active (even just walking) helps with circulation and also can help keep the pain at bay.

 

But in the end, be prepared to stop if your body says stop while on the cruise. Don't drink a lot of alcohol and stay hydrated. If you need a nap there is no rule against it on vacation. :)

[searoses]

Sherilyn....I looked up fms but couldn't find anything relevant....would you mind sharing what it is?....you certainly gave good advice on pacing yourself....I hope your cancer therapy makes you swiftly better....I am an 18 yr survivor....

[xxoocruiser]

Sherilyn....I looked up fms but couldn't find anything relevant....would you mind sharing what it is?

 

 

FMS generally stands for Fibromyalgia Syndrome

[searoses]

Thank you.....I was diagnosed at 30 in 1980 which is amazing considering much of the medical community did not recognize it until much later....I did not realize that was an abbreviation for it......swimming and massage are my go to for relief and prevention of flares...and not getting worn out more then one day at a time....

[suebee53]

Having cruised with just a cane, a wheelchair pushed by DH and girlfriends, and then my own scooter, I can testify to what a huge weight of concern the scooter removes. Especially when you see the loooooooong walks demanded to get onto the ship and then down the piers when in port. And because a scooter gives you marvelous independence on the ship and in port. AND it means you don't hurt as much later!

 

I loved the point about seeing the scooter or WC as a tool like eyeglasses. They help us enjoy our lives! And our vacations!

[Algebralovr]

If you are looking at purchasing a wheelchair, be certain to get one with large rear wheels. The Blue Streak one on Amazon for $116 holds up to 250 lbs and has the large self propel wheels.

 

A number of the less expensive ones only have small wheels.

[Charlie4]

If you are looking at purchasing a wheelchair, be certain to get one with large rear wheels. The Blue Streak one on Amazon for $116 holds up to 250 lbs and has the large self propel wheels.

 

I bought this chair a few weeks ago and took it for a spin at the Mall. So far I like it very much. I will be in Disney in 2 weeks and let you know how it works. It cost the same as a week's rental, so we figure if we use it twice, we are ahead of time. I will push myself part time and my hubby will push part time.

 

Ann

[AmativeDame]

Wanted to touch base and give you all an update as you asked.

 

Thankfully, I am actually doing a lot better. I think my new physician was more saddened than I was that the new medication wasn't successful, but he agreed to let me try an anti-inflammatory and I have actually had a couple of almost pain free days! We're going to wing most of our port days, so I won't have any concerns about not being up to anything.

 

Having felt a lot better I really struggled at what to do, but I did book a scooter from care vacations. I am going to try and suck up my pride and use it as much as I can on the ship. I did go ahead and purchase a cane since my doctor suggested it, and I have been realized surprised how much it has made a difference. Started off using one of my mother's spares, and I ended up getting a folding one for myself so I can stick it in my purse or my beach bag in case I need it.

 

Trying to stay positive, and I feel like this trip will still be a good one no matter how my pain level goes.

[Boozebabe]

I too have lots of Arthritic pain. I started with a transport wheel chair that my husband pushed for the last 2 cruises. In October, after using a scooter at a casino, I decided it was time to purchase my own scooter. Best thing I ever did. I also got a lift for the back of the car so I can go out and about (the mall) by myself at home.

 

I am looking forward to our upcoming cruise in Feb with my new toy. I know you aren't looking for medical advice but here's a little. Not sure which cruise line you are sailing on but Carnival has an acupuncturist on their ships. I have visited them twice and oh what relief I got on the cruise.

[thrillfan]

I use a scooter, take my meds, get rest and take a personal massager that I use at night to help my feet and leg pain.

[Martin and Lindsey]

I am wondering if any of you need a particular pillow and whether the cruise line (Celebrity Solstice) will provide one for you.

 

I have spinal problems and have had my lumbar and neck fused.

 

I usually take my pillow with me when we go away but this is a long trip and we have a small luggage allowance. If they can provide a memory foam contoured pillow for me that would be great.

[Enforcer]

I am wondering if any of you need a particular pillow and whether the cruise line (Celebrity Solstice) will provide one for you.

 

I have spinal problems and have had my lumbar and neck fused.

 

I usually take my pillow with me when we go away but this is a long trip and we have a small luggage allowance. If they can provide a memory foam contoured pillow for me that would be great.

 

Hi M&L,

 

I would always prefer my own pillow so when it is practicable I take it with me. From your brief description of your trip is seems as though you will be flying, my suggestion to you is that you contact the airline(s) and explain the situation to them and ask them if they accept that it would be a "reasonable adjustment" for you to bring it with you.

 

Pete

[MommaBear55]

As a medical professional, I agree with all the advice given here. Because pain issues are so problematic and it is difficult to find the right solution for the individual, giving advice and sharing stories gives people ideas to try that may help. Obviously if it is a medical intervention, discuss it with your provider.

 

Each person on a cruise ship has a different cruise. Some party, some relax. Some get up early, some are the last ones to go to bed. Some do the MDR, some only do buffets or specialty restaurants. If you are having fun and enjoying the cruise at your pace, then it is the right cruise for you. DH and I often go our own ways for a few hours a day. That way we each have the cruise we want AND it gives us something to talk about later!

[searoses]

Amative.....when you fold your cane be sure to put it in a bag....I have lost 3!!! nice canes when my husband didn't notice them next to the bags when he took them down....I usually only use a cane when we travel so I never noticed it each time until it was too late....I find the cane is a signal to others that I might need a little extra time and space in busy airports,etc....so even if I don't really need it that day I use it anyway.....#4 is packed for thurs when we leave winter for a month for the first time!.....hoping fun in the sun will make the rest of my maine winter healthier and happier...I certainly hope you enjoy your trip...

[Martin and Lindsey]

Hi M&L,

 

I would always prefer my own pillow so when it is practicable I take it with me. From your brief description of your trip is seems as though you will be flying, my suggestion to you is that you contact the airline(s) and explain the situation to them and ask them if they accept that it would be a "reasonable adjustment" for you to bring it with you.

 

Pete

 

Thanks Pete,

Usually I would take my own pillow and your idea of speaking to the airline about taking it is a good one. However, on this trip we will be taking 3 different flights before arriving at Sydney. If I just knew that they ship would be able to provide me with one .......

 

I am trying various possibilities now at home to try to find a solution to this. Just bought a new, smaller pillow which I thought would work but woke in the night with a headache so back to the drawing board. :confused:

[TheSmartOne]

Lots of great suggestions/ideas...just wanted to throw my two cents into the mix as well.

 

I have a couple different kinds of chronic pain going on and being cold makes everything worse for me. So layers of clothing are my friend...thin sweaters, a couple of pashmina scarves, and my favorite thick hooded sweatshirt always cruise with me. I also tend to bring a small heating pad with me in case I need to warm up my lower back, shoulders, or other painful spots.

 

 

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[sherilyn70]

I also tend to bring a small heating pad with me in case I need to warm up my lower back, shoulders, or other painful spots.

I'm not sure how many cruises you've done, but that is not a legal item on most cruise lines and can send your luggage to the naughty room.

[hdowney]

Only found this thread now. Glad to see you changed practitioners and the new one seems to suit better to understand your needs etc.

 

I have had Fibro for 15 yrs but only diagnosed December just gone. Poked prodded and tested to the hilt over the years. I also have arthritis, Hypoglycemia and CVS :/

 

The last holiday I went on was October a couple yr ago to Venice with my mam. I didn't realize how much my Fibro was going to impact my ability to enjoy my holiday and do the things I wanted to do. I found myself in great pain and unable a lot :(

 

I have since then been seeing a Rheumatologist, Pain Specialist, Occupational Therapist and Psychologist and am waiting on a Neurologist, Physiotherapist and Sleep specialist!!! Long list.

 

I will be going on my first cruise this year. Doing an Adriatic and Greece on NCL. I am concerned about my ability to do and enjoy properly. I have to plan my days out more than most, loosing the spontaneity I used to love. But needs must. I am going to buy myself a folding cane, I believe it is time I push pride away and realise it is necessary.

 

I am also overweight - due to Hypos and pain mostly. But I am slowly chipping away at that.

 

All the tips on here are lovely and helpful and it is nice to see we are not the only ones

[Enforcer]

I'm not sure how many cruises you've done, but that is not a legal item on most cruise lines and can send your luggage to the naughty room.

 

Hi,

 

Disposable heat pads are available.

 

Pete

[sherilyn70]

Hi,

 

Disposable heat pads are available.

 

Pete

Yes, but that is not what the post would lead someone to believe is being used. Just wanted to make sure they know that talking am actual heating pad that uses electricity would be a problem.

[payitforward]

Yes, but that is not what the post would lead someone to believe is being used. Just wanted to make sure they know that talking am actual heating pad that uses electricity would be a problem.

 

I run annual group cruises for people with fibromyalgia and/or MS. (Fibrocruise dot com.) Royal Caribbean has confirmed for me that heating pads are legal for our travelers to bring on board.

 

I see that the OP has already traveled, but will throw in my two cents for those still following/reading this thread:

 

 

1. Pace yourself: The inclination is to push to do everything you want to do in the first couple of days. This may cause your pain to flare to the point where you won't be able to do much of anything later.
   
2. Scooters are your friend: I completely understand the fear of that "stigma" when using a scooter. But, what other people choose to think of me is far less important than me being able to enjoy my entire vacation. (I also understand being self-conscious about being overweight. That said, the idiots who want to judge us for that haven't walked in our shoes. They have no way of knowing how medications and pain can pack on the pounds. Again - their opinion isn't important.)
   
3. Use the help available: This includes wheelchairs at the airport, skycaps, the bell desk, etc. Don't risk adding to your pain by trying to haul your luggage around, standing in long lines, or walking through the terminal. It's worth an extra couple of bucks to let somebody else handle these things for you.
   
4. Build in rest time. Traveling is hard on the body. I always fly in at least one day prior to my cruise. Then, I rest at the hotel. If there is a Massage Envy in the area, I may get a massage before boarding. I have also been known to book a hotel for a day or two after my cruise where I simply rest and recover before heading home.
   
5. Inflatable Leg Wedge: My feet and legs tend to hurt and swell when traveling. I purchased an inflatable leg wedge online, and always take that with me. When I do lie down, I elevate my legs.
   
6. Stay ahead of the pain: Many of us with chronic pain tend to avoid taking pain pills until the pain is really bad. Don't let the pain get bad. Take what you need to take BEFORE it gets to that point. With all of the extra activities, you may not be able to get it under control if you wait too long.
   

I know I have a lot more tips but I can't seem to think of them just now. I'll add more as I think of them.

[sherilyn70]

I run annual group cruises for people with fibromyalgia and/or MS. (Fibrocruise dot com.) Royal Caribbean has confirmed for me that heating pads are legal for our travelers to bring on board. .

 

Then you must have a special agreement in place with them. Even special needs had confirmed the answer is no for medical.

 

 

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[payitforward]

Then you must have a special agreement in place with them. Even special needs had confirmed the answer is no for medical. /quote]

 

Thanks for pointing that out Sherilyn. Just to be safe, I have gone back to my sales rep to double check/confirm the original answer. I'll let you know what I hear back.

 

Thanks again,

Julie