Doing Dis with RA

[Andrea464]

Hey!
Recently dx with RA. So far it's mainly hitting my hands, but I do get some pain in my hip and knee (not sure if that's RA or just an old injury).
Any tips? We're thinking of heading back in October.
I think my biggest concern is walking around. I think I can do it if I have some good narcs and take breaks.

 

[LBAK]

Sorry to hear about your Dx but WDW is totally doable if you take your time and a lot of breaks. I have moderate RA and we go every year. Some years I"m better then others depending on flares. I take my Celebrex every morning, I walk slowly letting my family run for fast passes, I keep well hydrated and I try not to complain (that doesn't always work) I don't mean to sound like a resort snob but I only stay at a resort with a hot tub. I soak for a while at the end of the night and it works great for me. In time you'll get the hang of what you can and can't do to survive the day.
One year my RA was particularly bad and in the middle of my vacation I had to rent an ECV. I was thrilled to give in to it but I had to treat myself kindly. One day off my feet and my knees and hips felt so much better that I was able to walk the rest of the trip.
This past year I was walking on the treadmill for a few months before so I breezed through it. I exercised even when I hurt and believe it or not my body thanked me later!
Feel good and take care of yourself. Feel free to PM me if you need to.
Lynn

 

[Cheshire Figment]

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available will increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

Once around the World Showcase Lagoon Promenade is more than 1¼ miles; most people tend to average 8 - 12 miles per day at WDW.

 

[pumpkinfish]

Hey!
Recently dx with RA. So far it's mainly hitting my hands, but I do get some pain in my hip and knee (not sure if that's RA or just an old injury).
Any tips? We're thinking of heading back in October.
I think my biggest concern is walking around. I think I can do it if I have some good narcs and take breaks.

Welcome to the RA club! I have been living with A for almost 10 years, and we do Disney often. Only the past few years I have had to use a wheelchair at times due to the walking. As already pointed out, you can do Disney w/RA, it just takes proper planning. Here are a few tips that help me

*It might seem obvious, but don't forget to take your meds! lol While on vacation I sometimes get out of my routine and DH has to remind me to take my meds. Missing a dose or two of prednisone can mess me up so I have to stay on track.
*Go when the weather is warmer. We just got back yesterday and were fortunate to have fairly warm weather. The last two nights got really chilly for me so I had to layer. We know how the cold can affect us negatively, so going in October would be a good time. That's when we usually visit .
*Try and pick a hotel w/hot tub (or in room Jacuzzi). We only stay in at least a 1-bedroom DVC villa now so I can soak in the Jacuzzi at least once a day during our trips. I always buy bath bombs at Basin and bring along Epsom salts to soak my bones. (I absolutely agree with LBAK on this one!)
*Do not push your body to exhaustion! Sit often, relax, and wear proper sneakers.
*If you are having pain in your hands, try using the Thermacare heat wraps. They are peel and stick and I use these for my wrists, especially when the weather might be warm but it rains.
*Rent a wheelchair or ECV. Don't be too "proud" to give in to your pain. I can usually go two days in a row without a wheelchair before needing one. This trip I didn't need one until the night of our 4th day because I relaxed often, slept in, went to the pool, and then visited parks at night. When the weather turned, I had to go ahead and rent one.

 

[pumpkinfish]

Basically a person has a certain amount of energy available to them daily. If they relax during the day the amount of energy available will increase; when they sleep at night they recharge their system,

However, when in pain energy is used up much faster than in normal conditions. If you become exhausted, with by what you have done or, more importantly, what you have done while in pain your system will not recharge to the original energy level overnight and you are starting the next day with a lower amount of energy available.

Once around the World Showcase Lagoon Promenade is more than 1¼ miles; most people tend to average 8 - 12 miles per day at WDW.

Cheshire, this is true! I walked 11 miles our second day and 9.5 miles our third. This is also why a good pair of sneakers matters .

 

[catra121]

Just wanted to put in my two cents on this. My mom has RA and I have RSD...so our last trip (which was a mother/daughter only trip) was a little different than many of our previous trips but was one of my favorites.

I think it is important to know your limits and recognize the warning signs when you start to approach those limits. Do NOT push yourself past them because you will end up paying for it and then your ability to enjoy the trip goes down significantly. If you need to rest, then rest. If you need to go back to the hotel in the afternoon...then do that. Everyone is different in terms of what their limits are...but it's just important to know your own and not try to be "brave" and push through it.

Knowing that my mom and I have limited mobility and need to rest often...we took a different approach to this trip. We decided to stay value and got the deluxe dining plan. I scheduled 2 sit down meals a day and this really gave us some time to rest during the day and experience a lot of new things with regards to eating at Disney. We were still able to do everything that we wanted...but those 1 hour "rests" twice a day while we ate were absolutely essential and because they were planned in advance we didn't feel like we were missing out on anything.

We also made regular use of the fast pass system. Normally a 30 minute wait would not be an issue for a ride but now...it can be. So we would get a fast pass and then relax somewhere near by. Maybe sit on a bench, people watch, have a snack...whatever. And then when the return time came up we would get in the fast pass line and have just a short wait. When you suffer from chronic pain conditions you really need to take care of yourself and plan ahead because it's not just about how you feel right now...it's about how you will feel in 10 minutes, 20 minutes, 30 minutes, etc. Taking those short breaks here and there can save you a lot in the long run.

And of course...have a plan in place for if you have a bad day. No one wants to have a bad day at Disney but when you have medical conditions you don't usually have a choice. So have a plan for renting a wheelchair/ECV, or a down day spent at the resort, or whatever else works for you. I always hope I don't need the plan...but if you plan ahead it saves you from having to figure something out while you are there and being disappointed that you are missing out on something.

So my advice is to plan ahead as much as possible so that you are given the best opportunities to enjoy your trip. It may not be the same as previous Disney trips...but that doesn't mean it won't be just as fun. What is not fun is when you TRY to do all the same things you did before and you end up in a lot of pain and then you are just trying to survive the trip rather than enjoy it. Who knows...you may end up experiencing things you never thought about before and loving them.

 

[Mrsjvb]

I was diagnosed at 5. it's now in excess of 35 years later... every joint is affected, hips and knees worst.

I made it less than halfway through AK the first day. I spent the remainder of the day going from bench to bench while DH did the rides.

and AK is one of the less stressful parks.

next day I was in a wheelchair, if you are going alone or there won't be anyone to push, get an ECv( and practice BEFOREHAND.)

I now bring my own chair or rent from off site and use it everywhere except within the resort.

the humidity does a number on you if you are not used to it.