Recommendations for someone with Rheumatoid Arthritis

[Sozo2000]

Good afternoon,

I have been to WDW numerous times (it really is my happy place). I have been fortunate enough to be able to utilize the Disability passes over the years. This year things have changed and I now have more severe restrictions. Whereas before I was just unable to stand for long periods of time (which made the new DAS card work for me), now standing or sitting I will be unable to be in the park for more than 3 maybe 4 hours before my pain level will be too much. I had read somewhere that WDW is re tweaking their system to better fit people like me. Is anyone familiar with this? The DAS card that I have had previously would decrease my standing/sitting time but not the time spent in the park. Any suggestions would be greatly appreciated as this is probably the last time I will be able to enjoy the park with my two children and really don't want to ruin it for them because of my limitations.

Thanks!!

For those who are unfamiliar with RA and wonder why such a short window of time- my body is basically attacking the cartilage in my joints. My hips and shoulders have almost no cushion left and after a prolonged amount of time moving around the pain becomes unbearable. I really don't want to experience WDW heavily dosed on my pain meds (although that would probably provide some memorable laughs for my family

 

[lanejudy]

I'm so sorry your situation has changed making your vacation more challenging. Unfortunately, I am not aware of any changes to the DAS or other accommodations. Good use of a touring plan, rope drop, plus scheduling your 3 FP+ along with use of DAS if given can help you get a lot accomplished in a relatively short time, especially if not traveling at peak holidays. I would consider you to be fortunate if you have received a DAS for reasons related to standing/sitting as that is not typically the accommodation offered.

Enjoy your vacation!

 

[gap2368]

I would go to GR and talk to them about what you needs are, I know for me they have given me some extra things to help me out that is more then the DAS, that have helped me. Have you thought about renting/ getting an ECV so that you can save your energy for other things. I know the benches are going a way so finding a place to site is getting harder and harder unless you can sit on the ground, I just got back yesterday form a 5 day trip and I had a number of CM make a commit about me sitting on the ground, any ways.

I will say that getting extra acomidation is very hard to do so but I do not think they are now doing it ( mine was given to me like a year if not sooner, after the DAS changed.

but like Lanejudy said the DAS is not really given out for people that can not sit or stand long times

but touring the park smart like the PP said would be good maybe go back to the hotel for a bread/swim then back to the parks latter in the day.

 

[Sozo2000]

I'm so sorry your situation has changed making your vacation more challenging. Unfortunately, I am not aware of any changes to the DAS or other accommodations. Good use of a touring plan, rope drop, plus scheduling your 3 FP+ along with use of DAS if given can help you get a lot accomplished in a relatively short time, especially if not traveling at peak holidays. I would consider you to be fortunate if you have received a DAS for reasons related to standing/sitting as that is not typically the accommodation offered.

Enjoy your vacation!

Thank you. Unfortunately we have to go during spring break (not so much my happy place at that time) as my son is now a high schooler and I can't take him out of school as easily as I used to, ha! Also, since we are not staying at a Disney resort this time but off site there aren't as many options left available with the FP+. I am bound and determined to make it work though so will be cramming in as much as I possibly can. Hoping that we might be able to have a little magic happen while we are there.

Thanks again!

 

[Sozo2000]

I would go to GR and talk to them about what you needs are, I know for me they have given me some extra things to help me out that is more then the DAS, that have helped me. Have you thought about renting/ getting an ECV so that you can save your energy for other things. I know the benches are going a way so finding a place to site is getting harder and harder unless you can sit on the ground, I just got back yesterday form a 5 day trip and I had a number of CM make a commit about me sitting on the ground, any ways.

I will say that getting extra acomidation is very hard to do so but I do not think they are now doing it ( mine was given to me like a year if not sooner, after the DAS changed.

but like Lanejudy said the DAS is not really given out for people that can not sit or stand long times

but touring the park smart like the PP said would be good maybe go back to the hotel for a bread/swim then back to the parks latter in the day.

I now someone mentioned some extra passes that are a possibility that are actual paper passes that I might be able to get. I am assuming that is what you are referring to when you mention the extra help? An ECV would be a great thing but unfortunately it doesn't make a difference if I am walking or sitting as the pressure on the joints seems to be the same for me at least. That is sad that the benches are going away and as for me sitting on the ground is not an option (but again, would probably provide some comic relief to anyone watching me try to get up again lol). My first passes before the change to the DAS were because of chemo treatments along with and the inability to stand or sit for any prolonged periods. It was a different situation then and praise God that is no longer an issue. Now it is more an endurance thing with my joints and pain. I can walk or sit for only a certain amount of time and then off to my pain meds I go unfortunately (which usually means down for the count for the rest of the day). If it was only one major joint I might be able to handle it ha, but four of them has kind of put me over the top. Thank you so much for your response and suggestions! I am bound and determined to make this happen and be a wonderful memory for my kids.

 

[DisneyOma]

Good afternoon,

I have been to WDW numerous times (it really is my happy place). I have been fortunate enough to be able to utilize the Disability passes over the years. This year things have changed and I now have more severe restrictions. Whereas before I was just unable to stand for long periods of time (which made the new DAS card work for me), now standing or sitting I will be unable to be in the park for more than 3 maybe 4 hours before my pain level will be too much. I had read somewhere that WDW is re tweaking their system to better fit people like me. Is anyone familiar with this? The DAS card that I have had previously would decrease my standing/sitting time but not the time spent in the park. Any suggestions would be greatly appreciated as this is probably the last time I will be able to enjoy the park with my two children and really don't want to ruin it for them because of my limitations.

Thanks!!

For those who are unfamiliar with RA and wonder why such a short window of time- my body is basically attacking the cartilage in my joints. My hips and shoulders have almost no cushion left and after a prolonged amount of time moving around the pain becomes unbearable. I really don't want to experience WDW heavily dosed on my pain meds (although that would probably provide some memorable laughs for my family

Have you had a recent check-up with your doctor to see if there are some ways to get a lower dose of the pain meds? I have two doses for mine - one I can take during the day that takes the edge off, and one that makes up for not having a full dose at night.

Take a break at first aid - they have cots you could lie down on.

I'd be really surprised if WDW gives you anything beyond the DAS. There are so many people, for so many reasons, who cannot do a full day at the parks. I'm supposed to avoid the sun - especially in the middle of the day (10 AM -3 PM) so I can't do a full day. If WDW gave people passes so they could do more in a few hours than others, it would clog the system like the GAC did. WDW is really trying to avoid that.

 

[Sozo2000]

Have you had a recent check-up with your doctor to see if there are some ways to get a lower dose of the pain meds? I have two doses for mine - one I can take during the day that takes the edge off, and one that makes up for not having a full dose at night.

Take a break at first aid - they have cots you could lie down on.

I'd be really surprised if WDW gives you anything beyond the DAS. There are so many people, for so many reasons, who cannot do a full day at the parks. I'm supposed to avoid the sun - especially in the middle of the day (10 AM -3 PM) so I can't do a full day. If WDW gave people passes so they could do more in a few hours than others, it would clog the system like the GAC did. WDW is really trying to avoid that.

Thank you! That is a great idea. Previously the decreased dose did not do much for me and I seem to have a system that responds very strongly to the meds but it has been awhile since we have tried. I still have three weeks before our trip to try different options though.

 

[powellrj]

Have you thought about a rollator? You will always have a seat when you need one since the benches are going away.

 

[gap2368]

I now someone mentioned some extra passes that are a possibility that are actual paper passes that I might be able to get. I am assuming that is what you are referring to when you mention the extra help? An ECV would be a great thing but unfortunately it doesn't make a difference if I am walking or sitting as the pressure on the joints seems to be the same for me at least. That is sad that the benches are going away and as for me sitting on the ground is not an option (but again, would probably provide some comic relief to anyone watching me try to get up again lol). My first passes before the change to the DAS were because of chemo treatments along with and the inability to stand or sit for any prolonged periods. It was a different situation then and praise God that is no longer an issue. Now it is more an endurance thing with my joints and pain. I can walk or sit for only a certain amount of time and then off to my pain meds I go unfortunately (which usually means down for the count for the rest of the day). If it was only one major joint I might be able to handle it ha, but four of them has kind of put me over the top. Thank you so much for your response and suggestions! I am bound and determined to make this happen and be a wonderful memory for my kids.

they went away with the paper FP as another accommodation with the DAS card now it is linked to the DAS card ( and like I said it is very hard to get) where I get my DAS card renewed I most of the time I get a CM that says you have this accommodation followed by them reading why and going ohh I see yes you do need this, and something else.

I am glad you are off chemo and guessing you are cancer free, yeah for you!!!

I have a friend that uses an ECV due to a lot of joint pain, knees, hips ankles, 4 or 5 of her toes, wrist, elbow, jaw, solder, I assure I am missing some but these are the ones she complains about the most.

we do together a lot here are somethings she dose.

she pre medicates with muscle relaxer ( forgot what she takes)

she will do some stretching to warm up her joints before hand ( she learned them in PT and OT)

she brings heat and ice packs ( really ziplock bag for ice) and uses them as needed

she also has a TENS unite that helps with her hip pain)

she dose use an ECV and will walk when she can and she is good at shifting her weight around when she is sitting so she dose not put weight on any one point on her boady too long.

you can also do the above with a wheel chair or roller and use it as a walker and push it round.

I hope this helps

 

[johnsgrl]

I haven't heard anything about Disney altering the DAS for people like us and I am not sure there is an accommodation they could make to extend our stamina. If I'm in pain I can't imagine what could be done, though I surely wish pixie dust was a RA treatment!
I use my ECV and depending on what is most painful on any given day, will walk around some. Maybe leave the ECV outside the queue and walk it.
I rely on low dose painkillers, ice and the hot tubs to get me through our trips.

 

[DisneyOma]

If ice helps, bring some ziploc bags with you and get ice at counter service restaurants that have the drink machines for guests. I'm thinking Electric Umbrella at EPCOT, and the place near Indiana Jones at HS, but I don't know where in MK and AK, sorry!

 

[Smittolis]

You don't have 10 posts so i cannot PM you... so i don't want to get too personal in public view...

However, you can speak to your RA Doctor and depending on what regimen you are currently on, it is definitely feasible to ask for a tapered dose of prednisone, if you are already on it, you can discuss a temporary increase with a taper over the time you are there. Depending on your pain meds, you can change to a less side effect inducing one such as Tramadol and have a low dose to manage the pain.. as opposed to a 'genuine' opioid. If you use a biologic you can also speak with your RA Doc about overlapping slightly depending on the meds you are on, for example, if you take Humira you can take one of the pens with you and take it there, that way you are on top of your drugs. While I do not condone the misuse of cortisone, i would definitely consider a shot (depending on your history) in your joint that is hurting / inflamed etc..

I would just plan a lot of your days in the parks that will allow you to break up the day, a couple of dining experiences, shows etc... being able to sit down in air conditioning will help you recharge. You can ice at the hotel to help ease the inflammation from the day. Wearing some compression socks or a shoulder wrap my also help with the perceived discomfort etc..

There are many options, but its difficult to really tailor them without knowing more... get to 10 posts and pm me! ;o)

 

[Mrsjvb]

I was diagnosed at 5. I am now ten times older. my strategy is to build in a LOT of downtime. as in all TS meals, interspersed with the low and slow rides and attractions like Philharmonic/Hall of Presidents and carousel of Progress. between that and my chair I can now do open to close( no late EMH) oh and i ALWAYS take the middle of the week 'off' no park, no DS, no nothing. hang around the resort( usually AKL)

at home I get regular massage therapy ( alas my insurance won't cover it) but it has done wonders for my overall stamina and ability to cope.

 

[Simba's Girl]

Hi! I also have severe RA, been to Disney many times since my diagnosis 10 years ago. I haven't ever used a GAC, although I've considered it in the past and was too stubborn in my youth to actually use it too. Right now on my current treatment I am stable enough to return to my previous activity level (I'm a runner and a swimmer) and am planning on running the 10K Marathon weekend with my youngest DD. This is to offer hope to you but as you know with RA it is never an easy answer as the way I've gotten here is through prednisone and a non FDA approved dose of Xeljanz.

I actually second the idea of a prednisone taper starting right before leaving for vacation, the lower dose pain meds for during the daytime as well as building in rest periods. I encourage you to use any aid available that you need, weather it be a rollalator thingy or a wheelchair rental or an ECV. Build in rests and plan smart. Your children sound old enough to understand and respect your limitations as well.

Ultimately I feel that you need to start with your rheumatologist by talking to them about how to manage your pain (and fatigue as well-we can't forget about that one) during vacation but also not during vacation too.

Good luck!

 

[Pridemom]

I also have RA/JRA. I agree with the Prednisone burst. That got me through our WDW trip last summer. Before our trip, I talked to my Rheum and family doctor, told them about the trip and that I wanted to be able to enjoy it.
I got the Prednisone, some extra duty pain meds, and finally caved and got a parking placard. We left the parks around 6-7 pm, except one night so we could watch the MSEP and Wishes. I walked each day, but rested mid week because I got Disney Vasculitis. So hubby took the kids to Universal so I could put my feet up and rest.

 

[ttintagel]

30 years of psoriatic arthritis here. I feel your pain! I'm not sure I understand what your needs are. Do you mean that you need to go back and forth between sitting and standing, or do you mean that after a certain period of time you need to lie down?

 

[arminnie]

I have had chronic fatigue for almost 20 years. I now have dead nerves in one leg. I have used an ECV in the past, but now it is a life saver. I do not need any other accommodations. I

 

[chell]

Prednisone is a great idea. I may even ask my doctor before my trip, if I don't forget. I've had cortisone injections before a trip & that did help. If you've never had them I'd recommend getting them about 2 weeks before your trip. If you haven't already been. I just realized this is a thread from last month.

An EVC is an absolute must for me. I can't walk or stand long. Heck, I even have to use one at the grocery store now.