Anyone cruise with Fibromyalgia?

[dsal]

I have fibro and SS. For me flares come on with extended plane flights. I found I am better off not flying direct from Europe to Hawaii or other crazy schedules that take months to recover from.

 

I also avoid getting cold

flush sinuses

and stay gluten free

 

I'm back from my cruise, and here's the scoop!

 

I felt ok most of the time. But I made a huge mistake! We went to the Taku Lodge trip in Juneau, returning around 8 pm, and then had to get up the next morning for our Skagway excursion on the White Pass Railroad into the Yukon.

 

I was wary of booking back-to-back excursions like this, but I thought, "OK. One day is on a plane, eat a dinner that's made for you, do a little nature walk that is optional, fly back--then a train ride the next day. Should be ok." I'm not a morning person, so I was really sweating getting up early enough to make the Skagway trip. I did get up early enough, but felt like a zombie. I was pretty exhausted from the Taku lodge trip, that as soon as I got on that beautiful train, I started to doze. I fought the sleep off like a plague, but couldn't stay awake for the life of me. (The lady who was sitting on the train diagonally from me was doing the same thing.) I was so aggravated with myself! I mean, c'mon--this scenery was fabulous, I didn't even want to blink for fear of missing something, but here I was dozing. The good news is that there was a lady who kept announcing, "Oh wow, LOOK AT THAT!" Whenever she announced that to her hubby, I would jar myself awake, take a peek at the scenery, then unfortunately doze off again.

 

I was pretty tired out by the end of the cruise, so we didn't go out in Victoria. I just couldn't handle the thought of going out in the evening, returning late to the ship and needing to be out of our cabin the next day by 8 a.m.

 

I did ok on the cruise, but AWFUL on the plane. We had a longish plane ride home (Seattle to Ohio). I was in Coach class, and my Restless Leg thing started up. (I usually only have RLS when taking long car trips or plane rides.) The RLS started as soon as the plane took off. Practically everyone else on the plane was asleep but me (we took the red-eye), and my legs throbbed so that I was almost in tears. I finally went into my meds goodie pack and took enough meds to just knock me out. So I did fall asleep, but my legs still ached when I awoke.

 

I came home and slept most of the next day--probably a combo from being exhausted and from my little med cocktail. Then I slept in today until 11 a.m.

 

So--you mentioned that long plane rides get to you. Do you fly first class so your symptoms won't be so bad? I've never flown 1st due to the cost--but now I'm not sure I can fly again--at least a long flight--unless I have more leg room. (Funny thing is that I'm actually very short!! But if a seat isn't pitched just so, weird pressure is put on my legs and they ache. I know the seats in 1st are larger yet, but I think I'd be able to change leg positions, i.e. curl them up on the seat, if I needed to.)

 

Your thoughts?

 

Thanks,

dsal

[pfisted]

I have both fibromyalgia and chronic fatigue syndrome, and, as you can see from my sig line below, I cruise quite a bit. Since I have a tendency to have fatigue hangover after that, I am renting a mobility scooter this year, so that I can keep up with her and still have some energy left at the end of the day.

 

I've never heard the term "Fatigue hangover" but that is EXACTLY what we get, isn't it? I must use a scooter for that reason along with mobility & pain issues.I\ I am opposite SeattleCruiselover and have to stay away from cold, wet places so an Alaskan cruise is out for me. Biggest advise: use a scooter when you can, even when you don't feel the need. It saves the strength for when it's impossible to use one. Enjoy!

[MissRabbit]

I'm back from my cruise, and here's the scoop!

 

So--you mentioned that long plane rides get to you. Do you fly first class so your symptoms won't be so bad? I've never flown 1st due to the cost--but now I'm not sure I can fly again--at least a long flight--unless I have more leg room. (Funny thing is that I'm actually very short!! But if a seat isn't pitched just so, weird pressure is put on my legs and they ache. I know the seats in 1st are larger yet, but I think I'd be able to change leg positions, i.e. curl them up on the seat, if I needed to.)

 

Your thoughts?

 

Thanks,

dsal

 

 

So sorry you had a bad go of it on the train and the plane coming home. It really does put you out of sorts for the next day or two when you "push it" just that little bit too much.

 

As for the plane, we don't fly business class because of the cost. I really don't think, though, that the little bit of extra room would help much. Once your legs start aching, at least in my case, there is nothing i can do for it. You might want to get up and walk the aisle a bit just to get the blood flowing again and release the pressure on them, but again, it's like putting a bandaid on a broken arm, doesn't help much.

 

I think you did the best thing you could for yourself...and that's knocking yourself out. Sure, your legs ached when you woke up, but at least you didnt' have those hours of pain & restlessness.

 

Hope the rest of your vacation went well though.

[MissRabbit]

I've never heard the term "Fatigue hangover" but that is EXACTLY what we get, isn't it? I must use a scooter for that reason along with mobility & pain issues.I\ I am opposite SeattleCruiselover and have to stay away from cold, wet places so an Alaskan cruise is out for me. Biggest advise: use a scooter when you can, even when you don't feel the need. It saves the strength for when it's impossible to use one. Enjoy!

 

 

I force myself to take brief breaks whenever i can, even if i don't feel i need them. Once you hit that wall where you went too far, you pay the price for days afterward. Taking breaks gives you the best chance at avoiding it.

 

And me too, on the cold. When it's wet and rainy here, it's miserable. I'm looking forward to beaching it in October!

 

Have y'all heard the story about the spoons?

[hulamoon]

First class is great. Service is nice, but having more personal space is very restful.

 

I find if I am taking a long flight stopping on the way is good. A 24 plus hour flight can wreck me for months, so we stop half way and spend the night and take off again.

[Annie01]

Hello! Hope everyone is doing fine! I have a question about pillows. I'm going to request egg crate mattress cover for the bed for my upcomming cruise, but has anyone requested extra pillows? This will be my first cruise so I don't know how many are in a room (I'm on RCI Mariner). Can you request more pillows for your bed from your room steward?

[codyboy]

I remember when I went on Freedom of the Seas , we were lucky to have extra pillows SO when we go Mariner of the seas n August I am hoping it will happen again. If not than I will ask for it. I usually have two pillows for neck.

[MissRabbit]

i don't see why they wouldn't bring more pillows if you ask nicely.

[Jules59]

I've been reading this with interest. I've had Fibromyalgia for about 10 years now. Bad enough that I can't work. I have other medical problems too. I need to take quite a few different RX's. I need to sit or lay down every so often to help the pain in my legs and hips and feet. Our last cruise was last January to the caribbean. We love it down there, especially from being from WI. Unlike others who have posted here, I have more problems with the heat and humidity than the cold. I want to enjoy our cruise so much, but my husband is always on the go. I have a hard time from the time I get off the shop, till I get to the end of the pier. My husband is a few years younger than I am and much more fit. Anyone have any more ideas to help us with fibro?

[SeattleCruiselover]

I've been reading this with interest. I've had Fibromyalgia for about 10 years now. Bad enough that I can't work. I have other medical problems too. I need to take quite a few different RX's. I need to sit or lay down every so often to help the pain in my legs and hips and feet. Our last cruise was last January to the caribbean. We love it down there, especially from being from WI. Unlike others who have posted here, I have more problems with the heat and humidity than the cold. I want to enjoy our cruise so much, but my husband is always on the go. I have a hard time from the time I get off the shop, till I get to the end of the pier. My husband is a few years younger than I am and much more fit. Anyone have any more ideas to help us with fibro?

 

I've had a FMS diagnosis since the 1970's, and now they think I have MS on top of it. I am extremely heat intolerant. I keep either an ice vest, or some of the cold collars with me at all times when in the heat, to keep me from passing out.

 

http://www.arcticheatusa.com/ This is the vest. Kind of pricy.

 

http://www.bodycooler.com/cooling-neck-multiple-sclerosis-products.htm

 

These are the collars/scarves....much more affordable, and seem to work just as well.

 

As for the other, I would consider a collapsible wheelchair for the cruise, and have him push. I'm sure he won't mind.......;) then you will BOTH be tired when you get back, and a nap will be in order.

[MissRabbit]

i made up those cooling neck wrap things for our last cruise. it was so nice to wear them when it got too hot. I cant' hack the heat and feel downright miserable (and dizzy) when i'm under the blazing sun. having that little bit of coolness on your skin really helps alot. Of course, i can't hack the cold and rain either lol.

 

As for dealing with the fit and speedy hubby, I like the suggested idea of having him push you around in a collapsable wheelchair. *evilgrin* The only thing worse than having to take things slow and steady, is being with someone who can run circles around you. I always tell my hubby to go on ahead so i don't feel so bad having him plod along slowly with me. He won't go. Which is good on one half but crappy on the other.

 

What ports will you be travelling to, jules? Do you know if they are tendered ports or ones with a pier to walk down?

 

I really wish i could offer some suggestions to help with your fibro, but other than taking breaks and not pushing it, there's not too much you can do to make the fibro manageable when it's bad. Maybe make sure you're wearing supportive shoes. Nothing tires my legs and flares the pain in them worse than wearing flipflops with no support. Course, i still wear the flipflops :(

[Jules59]

Thanks all for the advice. We will be doing the western caribbean one week and the southern the following week. We will be celebrating our 30th wedding anniversary.

[Jules59]

Forgot to add. Western will be more port intensive than the southern. And I need to get my feet up more often. I know what I should do, just that it always doesn't work out.

[littlesnit]

Just wanted to add a few tips I've learned from cruising with fibro.

 

I take a cane and use it even though I rarely need one at home. It helps me keep my balance on a rocking ship, and comes in handy if I overdo it on shore.

 

You can contact guest services ahead of time and ask for a shower bench. Again, helps me with any potential balance problems. Better to be safe than falling in the shower.

 

During muster drill, explain politely that you have trouble with stairs, and they should direct you to the elevators.

 

Contact guest services beforehand and tell them you may need special assistance with boarding. They can provide a w/c or at least let you use that gangway and the elevators.

 

As A/C kills me, I always take jackets and hoodies to make sure I'm comfortable on board. If I'm seated where a vent is blowing on me, I ask to be moved.

 

Cruising is one of the vacations I can handle as everything is pretty much conveniently located. I just have to pace myself and be careful choosing excursions.

 

Safe and happy cruising to all!

[MissRabbit]

excellent advice littlesnit! This thread has been very informative.

 

I spent 7 hours on the go yesterday, from doctor's appts, to scans at the hospital to back x-rays. By the time i got home, i literally felt like dragging myself along the floor to reach the sofa lol.

 

While most days, those with fibro can take cautionary measures to limit any flareups, there are some days, like the one i had yesterday, where it's unavoidable. Thankfully, i can rest up today and recoup.

[kellanrevere]

I've had a FMS diagnosis since the 1970's, and now they think I have MS on top of it. I am extremely heat intolerant. I keep either an ice vest, or some of the cold collars with me at all times when in the heat, to keep me from passing out.

 

http://www.arcticheatusa.com/ This is the vest. Kind of pricy.

 

http://www.bodycooler.com/cooling-neck-multiple-sclerosis-products.htm

 

These are the collars/scarves....much more affordable, and seem to work just as well.

 

As for the other, I would consider a collapsible wheelchair for the cruise, and have him push. I'm sure he won't mind.......;) then you will BOTH be tired when you get back, and a nap will be in order.

 

 

There is a company that supplies cool products for dogs. They are currently working on a cooling vest for people with MS. You are fortunate that they are located in your area. I have the cooling mats for my dogs and swear by them. A friend of mine has recently ordered a custom vest for her husband with MS.. they are worth a look

http://www.zentekclothing.com/

They look just like regular vests, they aren't as bulky looking as the dogs vests.

[SeattleCruiselover]

There is a company that supplies cool products for dogs. They are currently working on a cooling vest for people with MS. You are fortunate that they are located in your area. I have the cooling mats for my dogs and swear by them. A friend of mine has recently ordered a custom vest for her husband with MS.. they are worth a look

http://www.zentekclothing.com/

They look just like regular vests, they aren't as bulky looking as the dogs vests.

 

 

Thank you for that. I may just have a word with them, if I can get the permission from my employer for a dress code waiver for something worn outside of the clothing. Of course, knowing them, they'll say no....as usual, but it's worth a try.

[dstone]

I have MS, and find the heat is awful (I loose muscle tone) and the cold makes me stiff. But, I always take my transport chair to preserve my energy. The cooling bandanas are great. I always take a sweater, the dining rooms and shows are always cool.

[SeattleCruiselover]

I have MS, and find the heat is awful (I loose muscle tone) and the cold makes me stiff. But, I always take my transport chair to preserve my energy. The cooling bandanas are great. I always take a sweater, the dining rooms and shows are always cool.

 

It's going to be 95 degrees here this weekend, so I have my little water bottle with attached fan out and ready to spritz when I go out. I wish it was fall already.....;)

[Lemmi]

My mother has fibro and I would love to hear more from cruisers that also have it. She can't stand cold' date=' even southeast winters put her in extreme pain at times. She loves going to Florida and says she feels so much better down there. I have been trying to convince her to try cruising with me. She loves the duty free gifts I bring back for her and likes to go over my pictures but she is hesitant to set her foot on the boat. Any suggestions that might help me assure her that she can handle cruising would be awesome. Thanks![/quote']

 

I know you posted this some time ago but... I have Fibromyalgia, Arthritis and ME/CFS... sometimes I lose track of which is causing which problem when! :confused: I understand your mother's hesitations about cruising, to be honest I was the same to start with because when a flare up starts there's not much you can do about it in most cases and it can ruin a lot of things. Cruising for me is a little bit like a rest from some of their effects. As long as I am cruising to a warmer climate then I do well... sometimes it feels like I am getting a holiday from the fibromyalgia when I am on a cruise. :) I still have to be careful and make sure I don't over do it. But she should try it, it could be just what she needs. Hope this helps xx

[gram2trips]

Wow good suggestions! My first cruise is next January to Mexico. I have fibro and will make sure to order an eggcrate thing for my bed. I'm wondering if I should bring a sweatshirt and/or sweater just in case the main dinning room is freezing.

 

Does anyone know if there is an in-cabin refridgerator/freezer that you can bring a cold/gel pack and store in your room - and if so how big is it? Is it like what you find in a hotel room? I'll be on RCL Mariner of the Seas.

 

I always travel with a sweater or sweatshirt.....sometimes at dinner it does seem to get chilly.....

 

Don't know about refrigerator, but if u don't have one ask ur room steward & I am sure he can put them in housekeeping refridges & get them when u need them.

 

Have fun & pace urself!! I have chronic back & hip pain....

[HamburgAvonLady]

Yes, the Mariner of the Seas has mini-fridges. They will keep items "cool" but NOT frozen. We had a balcony cabin --- you should check with the "special needs" Dept. at RCCL to be sure your cabin has one. Hope you have a great time !

[dillie]

Hi I suffer with fIbro & ME/CFS. I'm going on my forth cruise on the celebrity constellation in 6weeks. Cannot wait. This time hiring a scooter, I have to use a wheelchair at all times but using a scooter to help ease burden on parents. I've not been well lately so am worried how I'll I cope. But I'll do as always make sure I rest when I need too, take heatpads, painkillers, remember to pace!!!. Do people find yes a relaxing holiday it's still really exhausting?. Get home & knocks me back & have to prepare for that.

 

Dillie

[lastflightout4]

I have had Crohn's disease and Crohn''s related arthritis for 27 years.. Always keep your meds with you till you put them in your cabin safe. Beds are soooo comfortable, I never needed a mattress pad. Pace yourself on you shore excursions. My husband and family usually just rent a cab or whatever so that we are with a smaller group. It is easier to accomodate my needs and not inconvience 40 people while I am one one of my frequent restroom breaks. There is a ton of walking involved on the ship and all excursions. I don't know your limitations, I really enjoy walking but wear comfortable shoes and bring many pairs. I usually try to schedule a rest time to get off my feet for an hour or two before dinner. Then I am ok to go for the rest of the evening. I am proud to see that you are planning on going and keep moving. I can either feel bad and hurt at home, or on a beautiful ship seeing the world! Good luck!