Jump to content

Tips for cruising with chronic pain?


AmativeDame
 Share

Recommended Posts

I was hoping you experienced cruisers might be able to help me a little. Going on what will be my second cruise in January 2016 (so not far now) and it is supposed to be our belated honeymoon as well. can anyone give me any tips for traveling with chronic pain or ways you cope with it while on a cruise?

 

For a little bit of background, I have been dealing with widespread pain for as long as I remember (since I was a child) but its been a struggle to find help with medical professionals I am only 29, so its not a lifetime so to speak, but its been a struggle. Was told I had fibromyalgia about 5 years ago now, but have only very recently found a provider who was willing to do more than tell me to "learn to live with it." I have an appointment next week, and I plan on bringing up my travel concerns then but I was thinking you might also be able to provide me insight or give me things I might be able to bring up while I am there.

 

My first cruise was a short 4 day to the bahamas on the RCL Sensation of the Seas with my mother. Being a smaller ship I didn't have a lot of issues getting around, and since we only had two port stops it was easier to pace myself. I didn't have any major issues with pain that really stopped our vacation since my mother and I have a similar pace on my bad days. Our cruise in January 2016 is going to be on the Carnival Breeze for 6 days (western caribbean). Much bigger and longer... with 3 port stops. Its also DH's first cruise, and I am in the middle of what is now almost 2 months of agony (the longest period of high level pain I have had in years.) I am starting to really worry if it's going to impact our vacation. I was hoping you might be able to offer suggestions on what I might be able to do to try and minimize some of the impact?

 

One of my biggest concerns really is just getting around. If I over do it I tend to pay for it the next day. How much walking or standing I do and how I will fare the next day because of it worries me, but I am struggling with how to actually find a solution for it. Unfortunately for whatever reason it can really be hard to gauge how much activity will result in what level of pain for me. Some days I can go out to say the grocery store and by the time I am done I am walking to the car with tears in my eyes from the pain and cursing myself for not having the nerve to ask for a handicap placard yet. Other days I can go shopping, go to a warehouse store and run a bunch of errands and hardly hurt at all. One of my biggest concerns is dealing with potential lines when getting back from port. Now I know I can request some wheelchair assistance from the cruise line, but that would be for embarkation/debarkation at the beginning and the end of the cruise only yes? So at port am I on my own? Is there anything other than renting my own wheelchair or scooter?

 

We had a price drop, so I was able to upgrade us from an inside to a cove balcony. While I hadn't planned it this way, I figure at this point it will hopefully give us a chance to relax and enjoy being outside on the ship without having to trek all the way to an upper deck. I've only planned out one of our port days - and it is a beach day Cozumel. Been hesitant to plan out/pay in advance without knowing what I will feel like that day. We were thinking that we might just make our first port stop (Jamaica) just another "sea day" for us, and winging our other port stop at Grand Cayman but I hate feeling like I am limiting our trip.

 

I would really love to hear any suggestions that you all might have.

Link to comment
Share on other sites

Hi,

 

We sound so alike although I don't have Fibromyalgia I do have a very rare genetic disease.

 

I have had to deal with constant pain and I have several coping methods although I do use pain medication as well. The main one I use is basically mind over matter, you have to persevere with this method but it does pay dividends, the way it works is -

Pain is a mechanism that the body has to tell you that there is something wrong, you know that the pain is caused by your condition so why do you need the pain, it is redundant. Once you have got your head around that you need to tell your body to turn off the pain, the way I do that is by relaxation techniques. This does take a little time to master but it does work, there are loads of methods available if you research the internet, it is a case of finding one that works for you.

The one I use is I close my eyes and imagine that from a point at the top of my head going down in a wave is that my body is relaxing. NEVER do this while driving or operating machinery (or the like) I used to say to myself words to the effect "go away pain" but I don't need to do that now.

Another method I use is having a positive attitude, my mantra is "as long as I wake up in the morning, I'm OK"

Coping with a disability is a whole different mindset and it does take some time to get your head around changes. I have started to use a scooter, I had a terrible time coming to terms with having to get one but it has changed my life for the better, my quality of life has just gone up and up. The way to think about it is that using some form of aid is a little victory, the victory being that I wasn't able to do this before but the victory is now I can. Obtaining a Blue parking badge will be a victory for you as it is a positive step forward (no pun intended :) )

Hope this helps

 

Pete

Link to comment
Share on other sites

You can definitely rent a wheelchair. Consider a small travel wheelchair (buying one might also be an option and not too expensive). A scooter might be more problematic because of your cabin - a rental scooter probably won't fit through the doorway. My sister has a small Luggie that would definitely fit into a regular cabin (it folds to the size of a carryon suitcase), but not sure if the rental companies offer that brand/model.

 

If you do rent, make sure you do it from a company that works with the particular cruise line you're going on.

 

Enjoy your cruise!

Link to comment
Share on other sites

I have had fibro since I was 30 and then ra for the last 20 yrs....rent a scooter to help maintain your energy level....the ships are so big....this will give you independence and safety....it can be daunting to walk off the ship and see how far it is to the taxis....sometimes I will use the scooter and my husband will take it back....they let you leave it near the gangway..... sometimes there is a trolley or golf cart that goes back and forth ......the biggest help for me has always been water....I swim regularly and it is the only thing that gives me periods of relief....sometimes I have to just bob around if I have a frozen shoulder but am never sorry I got in....the hot tubs can be helpful but they are usually not very hot....

Getting a taxi to the beach in cozumel should be easy,find some shade and get in to that beautiful water....I find just sitting in direct sun can make me worse so try to limit it....in grand cayman you must do the stingray tour....go with captain marvin for a lot less people....I find the jostling crowds exhausting.....you are standing in the water so it is not too taxing and such a thrill!....the tour pickup and shopping is right at the dock area after tendering so it is one of the less challenging ports....I have not been to Falmouth so can't offer any ideas there

Getting back on can be a challenge....if there is a place to sit sometimes my husband will get the scooter or I will wait for the golf cart but if I cab't sit I would rather just walk back for as quick a trip as possible....having my knees replaced in 20 16 and hoping that will improve my mobility for those difficult times......I hope you continue to travel as best you can....good for the body and soul.....not getting out to do what you can will lessen your ability as time goes on....have fun!!

Link to comment
Share on other sites

Give yourself permission to listen to your body and not push yourself beyond what you are able to do. If you need to skip an excursion and rest, do so! Don't hesitate to ask for help if and when you need it.

 

I now use a scooter, but before I got to the point of admitting to myself that I needed one, I used a rollator with a seat. The sturdy design helped me maintain balance and not favor the side with pain and I since there was a seat, I could take a break whenever I needed to.

 

On one cruise I was in so much pain that I was absolutely miserable. Out of desperation I scheduled an acupuncture session and found relief enough to get a good night's sleep. As a skeptical person, I used to think acupuncture was a waste of time. Now I have regular appointments and find them to be extremely helpful to me.

 

I hope you are able to find workable ways to maximize your enjoyment of your cruise. Best wishes to you!

Link to comment
Share on other sites

^^^

 

What Parmagal said.

 

Although I haven't officially been diagnosed with fibromyalgia yet, I do suffer from chronic ankle, knee and hip pain. The bones in my feet are also kinda jacked up and standing on my feet for a long time is a killer. Pain meds are my best friend on a cruise because I know they'll allow me to have a decent vacation without being in a crapload of pain. I also know that I'm on vacation and I make myself take it easy, so I don't overdo because I know I'm gonna pay for it later.

 

And the hot tubs..when I can find one that's actually got water that's warmer than a lukewarm bathtub..oh man. Those are a godsend for my achy bones.

Link to comment
Share on other sites

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.

 

I now use a scooter, but before I got to the point of admitting to myself that I needed one, I used a rollator with a seat. The sturdy design helped me maintain balance and not favor the side with pain and I since there was a seat, I could take a break whenever I needed to. [/Quote]

 

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.

 

On one cruise I was in so much pain that I was absolutely miserable. Out of desperation I scheduled an acupuncture session and found relief enough to get a good night's sleep. As a skeptical person, I used to think acupuncture was a waste of time. Now I have regular appointments and find them to be extremely helpful to me.

 

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.

Link to comment
Share on other sites

^^^

 

What Parmagal said.

 

Although I haven't officially been diagnosed with fibromyalgia yet, I do suffer from chronic ankle, knee and hip pain. The bones in my feet are also kinda jacked up and standing on my feet for a long time is a killer. Pain meds are my best friend on a cruise because I know they'll allow me to have a decent vacation without being in a crapload of pain. I also know that I'm on vacation and I make myself take it easy, so I don't overdo because I know I'm gonna pay for it later.

 

And the hot tubs..when I can find one that's actually got water that's warmer than a lukewarm bathtub..oh man. Those are a godsend for my achy bones.

 

Sorry to hear you have been struggling with the diagnosis. I can definitely empathize with the foot and ankle pain. Had a tendon and ligament repair on my one ankle and I have hammer toes on both feet. Definitely makes getting around and amps up the pain more.

 

Going to try and have a serious talk with the doctor this week about other options for pain relief. Unfortunately, a lot of what I have tried in the past for injuries or other pain (narcotics) haven't really provided any real relief, or at least no more than what I get from taking a large dose of ibuprofen or acetaminophen. Hoping he might be able to put me on a stronger anti-inflammatory at least for a little while.

 

Thanks for mentioning the hot tub! I actually hadn't thought of that. Sometimes heat tends to make my general pain feel worse, but I am going to have to try that. At the very least it might make my sore feet and stress melt away a little bit.

Link to comment
Share on other sites

Celebrity has ships....summit is one....with a large ,adults only therapy pool that is quite warm....too warm for me but my husband loves it after I wear him out snorkeling....I don't walk well but am a fish in the water....I tried acupuncture for months with no luck....at my own expense...I get a massage about twice a month which helps as well as the nurturing from the therapist.....so hard for women to allow others to care for them....I do try to push myself because I never know what will act up when and can rarely correlate an activity to a flare....in recent years the biologics available for ra have worked for many but only one works for me and it is stupidly expensive.....somehow my rheumatologist strong armed medicare and my secondary ins to cover it.....prednisone is still my best friend but it must be used sparingly....

Just being on vacation can pump you full of good chemicals......bet you will be able to do more than you think but if you can't just enjoy and take some good naps!....please come back and let us know how you did.....we must encourage each other .....so much to see and do in the world!

Link to comment
Share on other sites

Almost forgot.....be sure to request wheelchair service at the airport and on and off the ship.....I was amazed at how I didn't need 2 days to recuperate from the travel day!....get to the ship early and you will be one of the first on the ship.......went on princess with my sister last year and she demanded I come on all her cruises as they allowed them to board with us.....the crew are very kind and supportive on all the major lines.....ask for what you need...

Link to comment
Share on other sites

A rollalator ( a rolling walker that has a seat) is what I suggest if you don't go with a wheelchair or scooter.

 

I have been dealing with chronic pain for the last 8 years and have found a wheelchair or scooter allows me the best opportunity to do more with less pain and the fatigue that seems to go hand in hand with one another. Without them I could not walk very far. If what is holding you back from using one is the possible stigma that some attach to them, think of them as a tool, like a pair of glasses or hearing aid. Without the glasses, you couldn't see very well or without the hearing aid, you couldn't hear very well. Without a wheelchair or scooter, you can't enjoy your trip very well and couldn't do as much. Do what you need to to take care of you.

Link to comment
Share on other sites

This is not a great place to get medical advice. And, sometimes, neither are the local physicians recommended by friends and family.

Find yourself a major teaching hospital where multiple options and coordinated care are the rule rather than the exception. Their pain clinic would be a good place to start.

Your situation, including any thing like morbid obesity, may mean that you'll never be totally pain free. But, a multifaceted regime may get you to a place where physical activity need not be dreaded.

Link to comment
Share on other sites

I know what you are talking about but my advice would be:

 

1. Get a chair

 

A power folding chair is best

 

2. Don't try and do everything

 

3. Get a balcony cabin

 

So when you need a rest you can still see, smell and hear the ocean

 

4. Make sure you have your meds with you.

Link to comment
Share on other sites

This is not a great place to get medical advice. And, sometimes, neither are the local physicians recommended by friends and family.

Find yourself a major teaching hospital where multiple options and coordinated care are the rule rather than the exception. Their pain clinic would be a good place to start.

Your situation, including any thing like morbid obesity, may mean that you'll never be totally pain free. But, a multifaceted regime may get you to a place where physical activity need not be dreaded.

Not looking for medical advice... just travel advise.

Link to comment
Share on other sites

Not looking for medical advice... just travel advise.

 

 

In this situation, you really can't divorce the two. The best travel advice is to reduce (or eliminate) the pain, which really requires medical advice. This is particularly important since there's all the other days in the year to consider once the cruise is over.

 

For some chronic pain sufferers, the right Rx, PTx and diet regime could eliminate the need for assistive devices. You mentioned your use of OTC meds and recognition that there may be something better for you. (I wonder how many nerve-pained cruisers are on gabapentin) That's why, IMO, you should be concentrating more on which meds than which scooter.

 

Good luck to you.

Edited by Flatbush Flyer
Link to comment
Share on other sites

In this situation, you really can't divorce the two. The best travel advice is to reduce (or eliminate) the pain, which really requires medical advice. This is particularly important since there's all the other days in the year to consider once the cruise is over.

 

For some chronic pain sufferers, the right Rx, PTx and diet regime could eliminate the need for assistive devices. You mentioned your use of OTC meds and recognition that there may be something better for you. (I wonder how many nerve-pained cruisers are on gabapentin) That's why, IMO, you should be concentrating more on which meds than which scooter.

 

Good luck to you.

I made it a point in the OP, about how I was looking for other possibilities that my medical provider might not suggest. I also made it a point to mention that a scooter is not something that I really want to consider, and that I was looking for other possible options or suggestions from someone who has much more experience cruising that I do and would have suggestions that I may not think of.

 

I was not asking for direct medical advice from a random person on the internet, that was not the point of this thread. Never once in my OP did I request an opinion on my medical care, or opinions on how my medical care needs to be directed. Do not need someone to tell me that a multi-faceted approach or reducing or eliminating my pain is important. This is something that already exists. While I apreciate the time you put into your replies they are not helpful or productive.

 

If anyone has any other suggestions would help with mobility that hasn't been mentioned I would love to hear it.... as that was my actual request. But I will not be responding to coments like these about my medical care from here on.

  • Like 2
Link to comment
Share on other sites

TO OP :

 

Have MS and one of the things in common wiith Fibro is that I also deal with constant pain. Food actually can play a big part in controlling pain since the type of pain associated with both MS and Fibro generally do not get much relief from a RX or over the counter meds. Also such meds can cause even greater harm to the kidney and liver.

 

Sugar is one of the biggest culprits as it's higly inflammatory and can exsacerbate the pain you already are experincing. Salt is also another substance that exsacebate pain. So minimiizng both of these or even eliminating them completely from your diet may help. Sugguest doing a GOOGLE search using the pharse " Foods that cause inflammation " as there many others foods . Oranges as well as orange juice exsacerbates my MS pain.

 

Excercise , particularly in water also helps with reducing pain.

 

Hope this information helps you.

Link to comment
Share on other sites

Oh, go with the Travelscoot that you mentioned. I have one and it has made such a difference. I too didn't want to admit I needed something like that, but I am so glad I use it now. I thought about how, when travelling, no-one else knows you, so why should I care what they think?

 

But the biggest reason for having it, is that you don't want to return from your vacation thinking "if only I had done it differently". Give yourself the very best chance of a wonderful vacation.

 

Having the Travelscoot has meant I could do things, and see things, that I simply could not have done otherwise.

Link to comment
Share on other sites

I have rheumatoid arthritis and fibro. For me one of the most helpful things is wearing good shoes! I miss wearing nice heels and all the cute shoes out there but they make everything so much worse. Also take breaks as often as you need and try not to get too stressed or anxious as that always makes my symptoms worse. Do what you need to do for you :)

Link to comment
Share on other sites

Sorry to hear you have been struggling with the diagnosis. I can definitely empathize with the foot and ankle pain. Had a tendon and ligament repair on my one ankle and I have hammer toes on both feet. Definitely makes getting around and amps up the pain more.

 

.

 

Mine are jacked up due to bad genetics (my mom has a similar issue..her feet are totally flat and she got a full ride scholarship to college that way back in the day).

 

I'm the kind of person who tries not to inconvience anybody else if I can help it, so a lot of times I just suck it up and grit my teeth and get through it because that's just how I was raised. You don't whine, you don't complain. You just bull through.

Link to comment
Share on other sites

I have rheumatoid arthritis and fibro. For me one of the most helpful things is wearing good shoes! I miss wearing nice heels and all the cute shoes out there but they make everything so much worse. Also take breaks as often as you need and try not to get too stressed or anxious as that always makes my symptoms worse. Do what you need to do for you :)

 

Totally agree about wearing good shoes. The pain genrated by my MS also impacts my feet. I not only wear good walking shoes to minimize the pain but also have orthodic inserts which help as well .

Link to comment
Share on other sites

To the OP:

 

Definitely request wheelchair assistance for embarkation/debarkation. Regardless of the 'official' guidelines, many times they will happily wheel you onboard to your cabin, and/or to the buffet, as appropriate. On leaving the ship, we've had people help with pushing the wheelchair through baggage claim, customs, and out to the curb.

 

I do recommend a scooter. If you don't need it, fine. If you do need it - it's there. If you don't have a handicapped accessible cabin reserved, check the door width - many times you can still get a scooter through the door.

 

Let the dining room staff (waiter or maitre d') know that you'd prefer a chair without arms - that's easily provided.

 

I get the anxiety about being overweight, and the pain, and how that can affect your cruise. Been there, etc. My last cruise was 2 months post-cancer surgery, and I spent way too much time worrying about what I would be able to do. The ship's staff were outstanding, and alleviated many of my concerns. I hope you are able to fully enjoy your cruise!

Link to comment
Share on other sites

forgive me, I did not read everything; but I was looking into renting a manual wheel chair for a cruise, and then again from my trip to Disney later this year. I can buy a chair for $115 on line from Target, which is cheaper than renting for the cruise. Then I have the chair when I get to the port, hubby can push me. When we go to Disney, Hubby can push me through the airport, and the chair flys for free. If I feel good, I can use my cane, If I feel iffy, I can use the wheel chair as a walker and in port my husband will push me.

Link to comment
Share on other sites

My husband would be glad to push me anywhere but I prefer the independence of a scooter and to protect his aging back...he can go on a strenuous excursion while I can get off the ship to explore on my own or go down to the solarium....we only do carryon luggage so he handles whatever doesn't fit on the wheelchair at the airport....

Link to comment
Share on other sites

forgive me, I did not read everything; but I was looking into renting a manual wheel chair for a cruise, and then again from my trip to Disney later this year. I can buy a chair for $115 on line from Target, which is cheaper than renting for the cruise. Then I have the chair when I get to the port, hubby can push me. When we go to Disney, Hubby can push me through the airport, and the chair flys for free. If I feel good, I can use my cane, If I feel iffy, I can use the wheel chair as a walker and in port my husband will push me.

 

You can buy a motorized Shoprider Hero from Amazon and many other dealers for $599.00. Take a look! I love mine!

Link to comment
Share on other sites

Please sign in to comment

You will be able to leave a comment after signing in



Sign In Now
 Share

  • Forum Jump
    • Categories
      • Welcome to Cruise Critic
      • New Cruisers
      • Cruise Lines “A – O”
      • Cruise Lines “P – Z”
      • River Cruising
      • ROLL CALLS
      • Digital Photography & Cruise Technology
      • Special Interest Cruising
      • Cruise Discussion Topics
      • UK Cruising
      • Australia & New Zealand Cruisers
      • Canadian Cruisers
      • North American Homeports
      • Ports of Call
      • Cruise Conversations
×
×
  • Create New...