!!!!!Chronic pain while cruising!!!!!

[emmacruises00]

I was recently diagnosed with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) and RND (Reflex Neurovascular Dystrophy) in my shoulders, neck and arms, and now it has spread to my legs. It is a chronic nerve-related condition that only affects 1% of the population. It is excruciating, exhausting, and incurable. Anyways, I am an avid cruiser, and plan to cruise again in the future. Early in my injury (CRPS is usually caused by an injury, and I had bursitis and tendonitis), I sailed on the Liberty of the Seas, and Carnival Breeze. It was okay, but certainly not the best vacation ever :(.

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma

[SadieN]

Sorry to hear about your pain.

 

Might also want to ask this on the Disabled Cruising board.

[sail7seas]

Have you consulted your physicians for their suggestions as to the best way for you to travel?

 

Very sorry for your condition and wish you the very best.

 

[emmacruises00]

Yes, and there's not really any way other than what I do at home to control/help the pain :( thank you for your support!

[MamaE]

There is a prescription pain patch that your doctor can prescribe you, ask about it.

 

The pros of the patch are:

 

* It will not make you drowsy.

* Most are 24 hours, although some are only 12 hours.

* It's a continuous delivery, no "downtime" waiting until you can take the next pill, and no overlapping either where you might get too much.

* It's discreet.... you can place it under your clothes.

* No stomach upset like there is with other narcotics or heavy pain killers.

* The uncomfortable, slow digestive side effects are not present.

 

There are several meds available in this form, let your doc know you will be on a cruise and would rather not sleep your way through it, and you would also not like to end up in the infirmary with severe pain.

 

 

Please ask your doctor about it, it can really make a difference in the quality of your life.

[Kartgv]

A few questions come to mind: How do you deal with the pain on a daily basis at home? How would being on a cruise change that? Is there any reason to believe that cruising would make the pain worse than it is at home?

 

For me, if I have to suffer daily pain (and I do, though it sounds like mine is minor compared to yours), I'd rather do it on a cruise. A balcony cabin would be the only option for me - I'd plan on plenty of quiet time, just letting the sound and sight of the ocean calm and sooth the mind and body. I wouldn't plan too many shore excursions in advance - wait and see if you feel up to it once on board. Follow your doctor's advice on exercise, spa treatments, eating sensibly. Indulge yourself - in moderation!

 

Good luck - hope you're able to enjoy yourself and go back home refreshed and rested.

[emmacruises00]

Is it a Lidocaine patch? I have to use those to sleep, and I LOVE them! Thanks for the help! I really appreciate it :)!

[emmacruises00]

A few questions come to mind: How do you deal with the pain on a daily basis at home? How would being on a cruise change that? Is there any reason to believe that cruising would make the pain worse than it is at home?

 

For me, if I have to suffer daily pain (and I do, though it sounds like mine is minor compared to yours), I'd rather do it on a cruise. A balcony cabin would be the only option for me - I'd plan on plenty of quiet time, just letting the sound and sight of the ocean calm and sooth the mind and body. I wouldn't plan too many shore excursions in advance - wait and see if you feel up to it once on board. Follow your doctor's advice on exercise, spa treatments, eating sensibly. Indulge yourself - in moderation!

 

Good luck - hope you're able to enjoy yourself and go back home refreshed and rested.

I have a whole daily regimen that I've started recently, and it doesn't stop the pain by any means, but rather makes me feel like I'm doing something or at least trying to make it stop. No, there is no reason to believe that cruising would make it worse, but I'd like to be in less pain to be able to enjoy the vacation. That sounds like a pretty good plan. On Lib, I had to stay in the cabin and rest because it was so bad, and I couldn't even raise my arms to shoulder-level. I had to sit while the rest of my family went ziplining. It was not fun, so I hope to be able to control it better! Thanks for your help -- I REALLY appreciate all of the help I've received!

[emmacruises00]

And about rather being in pain on a cruise, that's exactly what I said in November when my docs wanted me to stay in town because there was a chance that I had a torn muscle or a disc issue. I told them that I would much rather be in pain on a cruise than sitting at home! I've learned that with this now. It doesn't do me much more good to sit at home than go out. And pain is PAIN! Your pain is still valid pain, and I'm praying that it goes away! Chronic pain is NO FUN! <3 and prayers to you!

[Jasalth]

While I don't know exactly what you are going threw, our last cruise I had a severely herniated disc in my lower back. 6 weeks before we left I was rushed to the ER because I couldn't want, managed to wait and get 2nd opinions on surgery, and ended up in the same "boat" not being able to walk 4 weeks after we got back!

 

I couldn't stand very long, or walk very far when we went. We were on Carnival and I contacted the special needs department just in case of long wait times getting on the ship and not being able to stand for longer than 20 mins and the possibility of a temp wheel chair. They were more than happy to give me information, and every time my card was scanned, they asked me if I was okay, or needed any help to get around.

 

That being said, I think the biggest thing if I ever had to sail like that again, would be in-room dining for full meals. Sure it might cost more, but not having to sit for 1-2 hours for dinner in those chairs might just be worth it! Alas it is only mostly Suites that give this perk though...

 

Does warm water help at all? Even if a Suite it out of the question, a room with a tub (or better yet one with jets!) might be a good thing just to relax in!

[MamaE]

There are several patches, I don't know about the lidocaine patch, but I believe that would be a very topical type of pain relief... kind of like---where you put it, it would dull the pain in that spot.

 

No, I'm more referring to Duragesic, which is a fentanyl, and very effective for severe pain... I've known end stage cancer patients who have benefitted from it..... they've stayed awake and coherent to visit with family, without being in pain.

 

Also, Butrans transdermal is very effective for moderate to severe pain. It is an opiod and you must be monitored quite often by your physician. I saw first hand (my now deceased sister in law used this) the type of effective pain relief this can offer, without the nasty side effects. She had no stomach upset whatsoever, she was coherent, able to enjoy life, live out her days in relative normalcy. She would put on a patch once every night before bed and sleep normally, wake up the next morning and go to work, sit at a desk all day and not be in any pain.

 

Everyone's different of course, and without any knowledge of what you're dealing with these ideas may or may not work for you, but it is certainly worth talking to your doctor about. It may help, not only for your cruise, but also in your daily routines.

 

Best of luck!!

[PennyAgain]

Many cruise lines, especially the finer ones like Crystal Cruises do not charge for in-room dining. I would ask these questions on the Disabled Cruisers topic as there is much experience there.

[cwistyred]

Good Evening,

My Husband has had RSD since 1992. He wasn't diagnosed until he was stage 4 and needed a sympathectomy to stop gangrene that was in his leg. They told him he would be in a wheelchair in a few years. I am very happy to tell you that he is absolutely not in a wheelchair and that there is light at the end of the tunnel and you can live with this condition.

Here is what we have done over the years to keep him mobile.

First and foremost, if you have a partner, they need to understand that this condition is not going away and there will be difficult times.

If your partner can, deep tissue massage is the best thing for the areas that hurt. If you can tolerate the massage it will save your body. I didn't have any special training to do this. I just bought a book and followed some simple movements. I gave him a massage several nights a week for many years and still do.

For pain management, early on my Husband was taking so many vicodin and using fentanyl patches and all these other things. It was a nightmare. Finally he had enough of going into withdrawl if he missed a pill by 20 minutes, he checked into rehab and detoxed. He then had a morphine pump implanted which gives him a metered dose continually. No withdrawl, no highs and lows, no drowsiness and best of all controlled pain. He also has a spinal cord stimulator, but for him that did not help.

You need to be on a good anti-depressant, not only for depression but for sleep and overall health.

You cannot give up. The pain can be managed, you need a great pain center and a good doctor. You can do this and enjoy cruises and travel.

Also since it has moved into your leg, take a cane and if you need it, use it. We take one, just in case.

By the way, I have another younger friend who also has RSD. She has actually had a baby since being diagnosed, even though the doctor said not to. She and her child are doing just fine.

[Lady Slipper]

I was recently diagnosed with CRPS (Complex Regional Pain Syndrome) also known as RSD (Reflex Sympathetic Dystrophy) and RND (Reflex Neurovascular Dystrophy) in my shoulders, neck and arms, and now it has spread to my legs. It is a chronic nerve-related condition that only affects 1% of the population. It is excruciating, exhausting, and incurable. Anyways, I am an avid cruiser, and plan to cruise again in the future. Early in my injury (CRPS is usually caused by an injury, and I had bursitis and tendonitis), I sailed on the Liberty of the Seas, and Carnival Breeze. It was okay, but certainly not the best vacation ever :(.

So, if anyone else has any kind of chronic pain, do you have any tips on how to get the most out of your vacation while in excruciating pain?

Thanks so much!

Emma

 

Our daughter was diagnosed with CRPS about two and a half months ago. ( never heard of it before and apparently not a lot of doctors are familiar with it and so patients don`t get treatment soon enough)

This all happened because our daughter went for a simple blood test and it was administered poorly and this was the result! Luckily her family doctor sent her to a Pain Specialist, he`s a Anaesthetist, maybe a week or so after it happened. They say the sooner they treat it the better your chances are.

The first two proceedures he tried on her she had a bad reaction to and made her feel quite sick. Now he is doing what I believe is called a Stellate Ganglion Block. That seems to have helped a bit. So far she has only had one treatment and she is to have another in a week and a half. You can google Stellate Ganglion Block to find out more, I think I saw something on U-Tube.

Our daughter was on all sorts of different medications and she has been given creams as well, I think one of them had ladocaine in it. I believe the creams only gave some temperary relief.

I pray our daughter will be without her pain one day soon. I also wish the best for you and everyone else who suffers with this horrible condition.

[elleks]

I don't know where you're from, but in the UK both Fentanyl and Buprenorphine are Controlled Drugs. You'd probably need a doctor's letter to confirm you're allowed to have them.