Experiencing Disneyland with Rheumatoid Arthritis

[ClaraOswald]

Last year I was diagnosed with RA. For those who aren't aware, it's an autoimmune disease where basically my body is attacking my joints. It's terrible and I hate it. I'm on medication and doing better. But some things still make my joints (hands, feet, ankles, knees, elbows) hurt a lot. I do fine walking normally. But recently we went to the zoo and did about 3 miles that morning. My feet were so sore. Which means I am now beginning to worry about our 2017 Disneyland trip.

When we went in 2015, we did around 10 miles each day and had 5-day hoppers. I got a little sore (because I'm not in great shape) but at that time, I had no RA symptoms yet.

So my question is....has anyone here experienced Disneyland with RA? How was it for you? Any tips? I'm still so new to this disease.

Also...if I am in too much pain walking, can I rent an ECV part way through the day? Do I need some sort of doctor's note or anything like that? I really, really hope it doesn't come to that but I want to educate myself on all options beforehand. (Of course, I think holding the handles on an ECV will make my hands ache so that kind of sucks too.) Plus I am only 35 years old and appear totally healthy so I'm sure I'll get dirty looks. Ugh.

 

[beachdreamr1229]

I haven't directly, but my mom has RA and went with us back in October for 2 days. Her medication at that time was working very well, so she was feeling as good as can be expected with RA. Her tips are:

Bring a cane. It can help take pressure off and is a good sign to CMs and others around that you may need a seat once in a while.
Use the disability access system. It helps to not have to stand it long lines.
Enjoy sitting in theaters for shows or on benches just to enjoy music and people watching.
Take a break midway through the day for about an hour or two and use the spa/hot tub at the hotel.
If your RA is especially active and painful, don't be ashamed of getting a wheelchair even if you don't use it all the time.

Have fun. I know from watching my mom that RA can be debilitating at times, but it doesn't have to stop you from having fun at DL.

 

[ClaraOswald]

If it were just my husband and myself, we'd probably sit and people watch a lot. But our son will be 3 and there's no way he's going to want to sit and do that. Or sit through any shows for that matter. So that kind of stinks for us. But we will definitely be going back to the hotel each afternoon. We did that last time and it was quite nice for all of us. I am hoping those couple hours off my feet will help a lot.

How does the disability thing work? I guess I'll have to google that.

I know a lot of people with RA have flares and stuff. But for me, it's basically a constant dull pain. And then it's worse when I do something for too long. Like if I write for a while. Or type. My hands will hurt a LOT. Same with my feet and walking. I am actually a bit worried they are going to want to add more meds at my next appointment (the meds are almost as scary as the disease, IMO.)

 

[megster1123]

If it were just my husband and myself, we'd probably sit and people watch a lot. But our son will be 3 and there's no way he's going to want to sit and do that. Or sit through any shows for that matter. So that kind of stinks for us. But we will definitely be going back to the hotel each afternoon. We did that last time and it was quite nice for all of us. I am hoping those couple hours off my feet will help a lot.

How does the disability thing work? I guess I'll have to google that.

I know a lot of people with RA have flares and stuff. But for me, it's basically a constant dull pain. And then it's worse when I do something for too long. Like if I write for a while. Or type. My hands will hurt a LOT. Same with my feet and walking. I am actually a bit worried they are going to want to add more meds at my next appointment (the meds are almost as scary as the disease, IMO.)

My husband is in the same boat. His RA meds are not helping much anymore and they want to change his meds - but you're right, the alternative medication they want him on has some scary potential side effects.
We're doing WDW in October with a 4&5 year old and he's finally agreed to renting an ECV. I honestly don't see how he'd make it any other way. I've just accepted it our new way of life and started to up my cross training so I'll be ready for 6 days of pushing 100lbs of kids in the stroller. He did use a wheelchair for a couple hours at the end of the day once at Cedar Point last summer and got some pretty nasty comments from people because he didn't "look sick enough" for a wheelchair or the disapproving side-eye from others. I really hope that does not happen in WDW.

 

[ClaraOswald]

I often wear braces (knee, wrist, elbow) when I'm in pain. So hopefully wearing those will keep the dirty looks away if I need an ECV.

 

[musicmom3331]

I've had active RA for about 12 years. I have been to both Disneyland and Disney World, walking about 8-9 miles a day. When I told my Dr. about my first trip he prescribed a bit of prednisone. He said it would really help, and it did! Going back to Disneyland in a few weeks!

 

[lalasmama]

While not RA, I have MS, so I'm used to the "you LOOK healthy" stares, and working around my limitations. With MS, my largest issues are stamina/endurance, and heat intolerance.

Heat intolerance first, though it might not your "problem," but it starts all mine! Essentially, I get too warm, and I lose all strength. How much is "all strength" you ask? I've had to crawl on the ground at Disneyland to get to shaded concrete to cool myself off while my husband poured ice down my shirt. Fun times. This is why I typically go in winter or spring, to avoid the hottest days. So, I get too warm, and my strength goes. Here's where my "problem" kind of coincides with yours. Feet hurt (really, pins-n-needles). Then knees hurt and stiffen up if I stand in one place too long. And then the back starts in... and soon enough I'm hobbling around like an old (old, old) lady! Certainly not like the spry 37 years old that I really am.

You don't need the disability access card for some things. Since they switched over from the GAC (Guest Assistance Card) a few years ago, I haven't used the updated ones. Why? Because they have gotten much better about helping me out without it. My biggest thing is avoiding stairs; I can't feel my feet sometimes, other than that pins-n-needles tingling, so I often miss uneven terrain. They may have gotten a bit snippy once when I tripped on a stair in Indiana Jones, and they told me that I should ask for the elevator from then on. I had no idea I just needed to ask to use it! Ah, sweet relief, I haven't fallen on Disney stairs since. I go to the exit of any ride with stairs, and tell them I can't do the stairs, and they give me my time to come back (tied electronically to my card). On rides where I need extra time to load (any timed load) I either go to the handicapped entrance and let them know I need the ride to stop to let me on (like on Goofy's Sky School), or let them know as they are getting ready to load me (Space Mountain). On Omni-mover rides (Buzz, Ariel, Haunted Mansion), by the end of the day, I ask them to slow the conveyer belt down for me, and they never even blink about it.

As others have said, take time to rest (as much as your child will allow!). Take things "slow." Hang out in Toon Town more than you normally would--then kiddo can run/jump/play at a house, and you can rest, then when you and he are ready, you can move to the next playhouse. Make good use of long rides for a rest that your kiddo will have no idea you're taking (Pirates of the Caribbean is approx. 16 minutes long, its a small world is about 13 minutes), afterall, you're on a ride.... Mickey and the Magical Map, in case you haven't seen it, is pretty catchy, lots of movement and dancing; kids can dance in the aisles during the show.

If you need it, there are ECVs that *may* be available, but they don't have a large fleet of them. If you think you may need one, I'd consider renting one off-site so that you may have it to and from the hotel as well (especially at the end of the day!), and then you know your ECV is yours, it's ready when you need it, etc. (My husband made me promise to rent one for future summer trips so that I wouldn't wear myself out so bad. I hate the looks, I hate the assumptions, but I also hate "giving up early" at DL, so I'll probably rent it like I promised!)

 

[lorijohnhill]

I have something similar to RA, but it is "undifferentiated" because the RA factor is still a little below the mark. I am always in pain, but flares and summer heat make it so much worse. Unfortunately, Prednisone is the only thing we have found (so far) that really works to bring down the inflammation. I HATE Prednisone since it makes me gain so much weight. I'm pushing to find something different. Methotrexate didn't really do much for me. Anyway... you asked about Disney trips.

My doctor has told me I am to use a walker or scooter (ECV) at all times (which I'm not so good about doing), but also instructed that the only way I could go to Disneyland was to use an ECV. This is very good advice. I can walk short distances, but can only stand about 5 mins at a time. I could probably get through with a walker, but would not enjoy it. What the ECV does is prevent me from getting totally exhausted and in so much pain that I can no longer function. The ECV allows me to enjoy the trip with my family. It has its hassles and downsides, but the fact that I can stand up at the end of the day makes it all worth it. I put a license plate on the front of it that says "Mommy's Wheels" and "Not letting my disability slow me down!" and I have gotten a very good response from that. It tends to put a smile on the faces of some that otherwise might think I'm just using it because I'm fat or lazy.

My biggest advice to you would be to not wait until you can't take the pain anymore to get on an ECV. By that time, the exhaustion will have set in and your experience will be greatly diminished. Try not to worry about what other may think, you have to do the right thing for you and your family.

 

[ClaraOswald]

Great info. Thanks!!

I will have an appointment with my rheumatologist a few weeks (or so) before my trip, so I will definitely ask about prednisone. I was on it for a while when first diagnosed but tapered off of it. Now I'm on methotrexate once a week and naproxen as needed.

I hate hot weather, in general. Not sure if it makes a difference with my RA yet. I was in a lot of pain last summer but that was before I was diagnosed and started meds. I have noticed a bit more pain lately as our humidity has gotten worse in the midwest. Thankfully the humidity in CA never seems so bad. (Needless to say, there will be no Summer trips to WDW though!)

I am going to try to exercise more in the coming months (though it's hard.) I am hoping that will help a bit with my strength and stamina. I guess we'll see.

My RF was barely above normal. At first they called and said "nope, you don't have RA." Then a few days later they called back and said they got another result back and I definitely DO have RA. My anti-CCP was through the roof. That's really the only test that indicated RA.