Anyone cruise who has fibromyalgia?

[Oscar_the_Grouch's_Sis]

Of course you both will have a very good time! The trick is to push yourself, never give into our disabilities but do know when to stop when its necessary.

 

Did you mean to say "push yourself"? Most people say "don't push yourself" ... but if you did mean to say that, then I think I know what you mean. You mean, get out of bed in the morning (even though it is very hard sometimes) and live life. Right? That is exactly how I feel. Some days I am just a mess (and I start acting emotionally unstable haha - so if you see me post something terrible, I have an excuse! :p) I want to throw myself a pity party ... but then I realize I'm not dead yet!!

 

Don't even get me started on the meds! I did a focus group for a fibro drug some years back and they showed me a list of side effects and wanted to know if I would still consider taking the drug. LOL! I told them "no way!" and they asked why and I said the list of their side effects were EXACTLY what I was already experiencing :rolleyes: But those asinine commercials do more harm then good. Now if you tell someone you have FMS you might as well be telling them you are suffering from a cold!! (I better stop! I feel a rant coming on :D:o)

[Cruisegirl6]

Yes I meant to push yourself, you hurt but you need to get up, dress, and function, I not mean doing everything you need to do sometimes you need to put aside things that need to be done and just say "oh well" and know your limits, but I feel many mornings when you wake up your in so much pain most people would just stay in bed, you need to get up push push move move move once you give in to the pain its pretty much bed and no life....its mind over matter, ok its difficult I know but at least you have to try. Many days most days I want to chops some limbs off because the pain is too much but I move I push and I get going, with limits of course, but never ever will it keep me in bed.

 

Fortunately my doctors not believe in those medications that are out there for fibro....I use anti inflammatories that make areas of pain "bit better" and then they ask if I want muscle relaxers (sometimes you need to take one to get the huge edge off ....you know what I mean) but I refuse to take them also, as its just playing with my mind and temporary "little bit relief" with a long list of definately will get side effects that also could cause other medical problems. I feel the body tells us where we hurt for a reason so we limit ourselves and not overdue things....

 

Its weird, on a cruise I am good the second day out...now I also took a short cruise in early december and it was the first cruise I still had the pains...something about being away from major lands I not understand but give me a seven night cruise after the first day and half I feeling some relief. If only I can live on a ship...I truely believe pressure effects us (as bad weather comes i feel it up to 3 days before the bad weather comes)...do you feel any relief as my girlfriend and I do on a cruise?

[needabreakcanada]

Interesting to hear that everyone seems to do fine on a cruise - very hopeful indeed!

 

I took a six week hospital course on Fibromyalgia. It was very educational. There were 15 of us. We had one day in the pool doing exercises and one day in the class educating and some excercises there too. I have the exercise tape and I do them 3 times a week and find they help keep me moving. If I stop for any reason I really feel it.

 

I cannot take anti-inflammatories as some Fibro patients also may not be able to. Alot of us have Irritable Bowl and are medicated for it - therefore anti-inflammatories are a no-no.

 

Its amazing how many ailments are under the umbrella of Fibro. We listed them one day in class as to who had what. Out of 15 of us 1/2 had the irritable bowl. One young lady (poor thing 3 kids under 5yrs) warned us all about pain meds. Another lady was swearing by them but was new to them. The mother of 3 warned her and all of us that your body becomes used to them so that your dosage increases in order to have any affect. At one point she was taking enough to do a horse and wasnt' able to function because of it.

 

I do take fibro meds. My original one put 30 lbs on me so I stopped taking it knowing the likelihood of me ever being able to exercise enough to take that weight off was not possible. My doctor has put me on another one that has not had any ill effects including no weight gain. Seems to leave me with more energy - so that is good. I am also not as tired as I was on the other meds.

 

Here is my question for today to my Fibro friends:

 

Would an inside cabin suffice or do I need a bigger one if I take a wheelchair? Note that the chair would be folded while in the room, I only need it outside the room and only in case of emergency flare up.

[Oscar_the_Grouch's_Sis]

1. PLEASE tell me which meds you are on. I realize they may not work for me, but I just want to know.

 

2. What exercise video do you have? I haven't been able to exercise in so long :( (I am talking "traditional exercise" Not daily living exercise - which I get plenty of) ... and I gave up caring about the weight. My life is hard enough - I'm fat. It is what it is :o

 

3. Yes, fibro is EXTREMELY COMPLICATED!! ( it is weird how there are so many "symptoms" and not everyone experiences fibro the same way )

 

To answer your question ... in my opinion, you will be much more comfortable with a larger (preferably balcony) cabin. ... But others that have done the inside might have had success. I have never tried it, so I really don't know. (I have seen an inside though - on the EOS, and it was SMALL!!)

[needabreakcanada]

Ok so I am on Lyrica. It is only new in Canada in the last few years. Doctor weaned my on and I am currently at only two pills morning and night. I did not feel any side affects - but hubby did notice more energy than when I was on my other medication. I am also not as tired.

 

I have a fibromyalgia exercise tape that the hospital sold to the people taking the course. It has some basic stretches, aerobics and cool down stretches. It was designed by a kinesiologist. Works for me. The hospital was Oakville Trafalger - it is in Oakville Ontario. Perhaps you can contac them for the tape.

 

Walking on the treadmill - or anywhere else helps alot.

 

I hear you on the "other" exercise. Laundry, dishes, housekeeping - it all seems so hard now I have the fibro.

 

I have just located a few local agencies that I can rent a wheelchair from to take on the cruise in case I need it. Called the cruisline and they told me the accessible cabins are much larger so that I can easily store it.

 

Still checking out buying a used one so that I have it around.

[read52]

Ok so I am on Lyrica. It is only new in Canada in the last few years. Doctor weaned my on and I am currently at only two pills morning and night. I did not feel any side affects - but hubby did notice more energy than when I was on my other medication. I am also not as tired.

 

I have a fibromyalgia exercise tape that the hospital sold to the people taking the course. It has some basic stretches, aerobics and cool down stretches. It was designed by a kinesiologist. Works for me. The hospital was Oakville Trafalger - it is in Oakville Ontario. Perhaps you can contac them for the tape.

 

Walking on the treadmill - or anywhere else helps alot.

 

I hear you on the "other" exercise. Laundry, dishes, housekeeping - it all seems so hard now I have the fibro.

 

I have just located a few local agencies that I can rent a wheelchair from to take on the cruise in case I need it. Called the cruisline and they told me the accessible cabins are much larger so that I can easily store it.

 

Still checking out buying a used one so that I have it around.

 

Lyrica works on the nerves. My husband was on it for his viral ecephilitis effects. He put on 40 lbs. and had all the side effects (swollen legs) but there was not much out there for him. In the past 1 1/2 he has had botox for his headaches. He has slowly gotten off of the Lyrica. He has been off for 2 months. The FDA has approved botox for migriane headaches a few months ago. That means insurance companies have to pay for it. We are working to that end. The botox has been the best med so far for his problems. He would have headaches so severe that he would have a seizure.

[TheD1gitalMe]

thanks for the replies - hubby was really worried it would be bad for my fibromyalgia. I am on medication daily, had a bad flare up in January that I am still working my way out of - but that is rare for me (fingers crossed).

 

Before the flare up I was able to exercise 3 times a week including 15 minutes each time on the treadmill.

 

Working my way back up to all that!

 

I will call royal to find out about wheelchair just in case. For the first time in my life, last year in disney, I experienced my first wheelchair. To tell the truth it was well worth it. I am able to do most things - just too much walking kills me.

 

Thanks again!

Hi.

I have just read your question about Fibro... I have fibromyalgia also and like you when I took my first cruise I was a little worried about flare ups ruining my holiday. Especially after paying a lot for the trip.

To be completely honest with you the cruise was the best holiday that I have been on in terms of the fibro. It was so relaxing!

With cruising you literally have nothing else to worry about which in itself helps, that teamed with the atmosphere and ease of getting around on the ship it really helped me.

One of my main problems is migraines... I get them all the time and they can last for weeks at a time... I was concerned that a flare up would lead to a migraine and thus ruin everything, when my flare ups are particularly bad I get very bad nausea as well as the pain, kind of like extreme motion sickness and was worried that I might suffer with sea sickness and thus trigger a flare up ( you know how these cycles work) but I have to admit I didn't even realise I was on a boat let alone moving!

All in all Cruising is the best holiday for Fibromyalgia sufferers.

 

Sorry for the extreme waffling... just a little passionate about things like that I guess :)

 

Leah (aka Lemmi - hijacking my hubby's screen name to post this as he noticed it!)

[dillie]

I am a cruise newbie. Hoping to book a cruise for 2013 on the adventure of the sea.

 

If anyone has cruised who has fibromyalgia I would appreciate hearing from them if it affected them overly on the cruise.

 

My husband is very worried for me that it might not be that enjoyable for me.

 

Also, just in case I have a flare up while sailing - do they have wheelchairs available on board?

 

Thanks.

 

I also suffer with fibromyalgia and m.e/c.fs. This year will be going on my third cruise. The first cruise i did we flew to pick up the ship. That effected me quite alot. But i got the rest i needed did what i felt upto, ate lots & had Accupunture which really helped i recommend that if you can.

 

The second cruise and one later in year i wont be flying it really took it out of me and took a long while to get over it. So not flying for me is better although i still have to pace alot & ill do what i feel upto but still enjoying myself as much as possible. I use my own wheelchair so i take it with me. Here in uk i know you can hire wheelchairs to take onboard.

 

Hope you have a lovely holiday

[Cruisegirl6]

I also have irriatable bowel and yes I still take anti inflammatories...I not care I not taking that other stuff and my doctor says its too new anyway, not know the true long term affects. I also have gerd, intestinal problems, neuropathy to name a few

 

Exercises forget it!!! I won't be able to move for days, but swimming or in poool I am good. I do get myself out to walk when I can just to move around.

 

Tomorrow is my biopsy for thryoic cancer, its always something now you know why I need a cruise lol

[needabreakcanada]

Lynda Good Luck and God Bless!

[My2Kitties]

To all that posted...God bless! I have Lupus and I have been cruising for some time now...it is the best way to live life to the fullest...the info here is priceless...I think everyone already hit on everything...the only thing I can add is I find that cruising is so beneficial to me I wish I could be on a cruise all the time...the walking is so good for me, not hard on the joints...there is no stress and lots of relaxation...bring everything you might need knowing you may not need any of it...ENJOY!

[read52]

Go to the disabilities thread to find out where and how much it is to rent a wheelchair. I know that you can rent scooters too for on the ship. My husband use to design scooters and elevators and other things for the disabled. Then we moved and he sold those same items.

[serval_girl]

I agree-cruising is the best vacation for someone with fibro or other similar issues. The thalassotherapy pool on some of the celebrity ships-for real meet your new BFF-I lived in that thing and was sad my next cruise when I only had a boring old hot tub :) You have lots of healthy food options, resting by the pool and in the hot tub, access to exercise equipment and classes. A cruise with several sea days might be best-that way you have more resting time in between shore days. I would also recommend a longer cruise-that way if you loose 1-3 days with a major flair up you wont "miss" the entire vacation.

[Tina0922]

My mother also has Fibro....She has had it for many years and it seems like every time she gets on a ship she does sooo much better. No stress, relaxing atmosphere, ect. She still has pain and cant walk too much but she can do a lot more while cruising than while at home. Must be the fresh air :) Drs told her to get away as much as possible to 'relax', as you all know stress is a killer for Fibro .... so she takes several 4-5-6 day cruises 3-4 times a year. Our annual mother/daughter cruise has turned into a quarterly event now since dad is "all cruised out". Good news for me:). Anyway, go and enjoy the trip. It will be well worth it. Also think about using a cane if cant get wheelchair. Mom uses a cane when she really cant walk much and it helps her. Just a thought. Happy sailings.

 

Tina

[sherilyn70]

I know this is a very old thread that was resurrected but since there are a couple of posts now I thought I'd add in a few things.

 

I've had FMS my entire life. I've learned all about my triggers and how to manage them. The absolute most important thing I have to manage is sleep. Not enough sleep leads to stress and stress leads to pain. Even on a cruise ship I do not let my sleep pattern get out of order... go to bed at 11p-12m and get up sometime around 6am +/- an hour. The next trigger is cold air, so I use heat therapy for that. Nothing like the warm air of the Caribbean to make you feel better. When things are really bad I do use massage therapy but that is very rare. I am for the most part unmediated. I occasionally (as in once every few months) use muscle relaxers or a sleeping pill to help regulate myself. Aleve is the strongest pain reducer I need most of the time and I also avoid using it. I guess I have a fairly high tolerance for pain though since I've grown up with this and didn't realize there was actually something wrong, that the pains I had and the headaches I got weren't normal until I hit my 30s; so not everyone can manage it the same as I do. I was diagnosed before there were meds to help ease the symptoms and started getting crippling headaches at 21, so I had to figure out how to control it myself instead of ending up in pain med rehab. There are certain triggers I can't control though, like smells/perfumes and noises so I just do my best to recognize a threat and avoid it as soon as it has been identified.

[brokenglass]

I also have Fibo... and I too want to thank everyone that posted for all the helpful information... feels weird seeing all these helpful people when where I work they think fibro is fake... :mad: .... let's not get me started on that rant!!!

I can tell you - our first cruise was only a 4 day cruise... but I felt so so good - like everyone posted - you can go at your own pace :D

as for meds... I gained 40 pounds in 2 months on lyrica.. but taking savella and vimovo now and it seems to be helping... BUT with that being said make sure to take you meds DAILY while on vacation and take a muscle relaxer with you also - just in case... and remember - you are on vacation - so relax ;)

we still take land vacation - but my hubby knows to pace us now... but the best vacations so far that I have taken and helped with my fibro flare ups are all inclusive beach vacations and cruises

enjoy your cruise!!!!