RSD or CRPS

[emtmom0104]

Ok, not sure how much of a long shot this one is. I was diagnosed after 5 LONG years of agony with RSD, or Reflex Sympathetic Dystrophy(Formerly called CRPS or complex regional pain syndrome). I have recently had a spinal cord stimulator placed, 4 weeks ago, and we are taking my son back to Disney for his birthday at the end of June. My dr said I should be able to return to most of my normal activities by then. I do still get flare ups of pain and swelling making it difficult to stay still and sometimes walk. What are some things I can do in Disney to help me cope with this? Does anyone have any personal experiences they can share with me?

 

[peemagg]

Oh Boy! Do I know what you are going through. I have been battling RSD for 2 years myself. Nasty disease!

The only way I can do any long distances is with a scooter. Shortly after being diagnosed with it, my dr gave me a script for a scooter. He knew I would need it for school and other activities. With the script the insurance covered it. I take this to Disney with me along with my cane. Between the 2, that is the only way that I can handle Disney. I suggest you look into using one for your trip. I found that it didn't zap my strength like walking does and I am not in as much pain, so I can enjoy the parks better. Maybe you could get your own scooter and take it with you.

 

[MariMouse]

My 17-yr-old daughter was recently diagnosed with RSD/CRPS. We are planning to rent a wheelchair and try to replace her axillary crutch with a HurryCane. She has also developed skin sensitivity to light touch over her hip (affected area) and was wondering if anyone had any other tips. Did anyone bring a pillow or something to cushion the rides? She loves rollercoasters but I'm thinking we may have to give them up for at least this trip.

 

[mamabunny]

@emtmom0104 & @MariMouse: Look at WonderGel cushions (or similar). I have a 2" cushion for my office chair that makes a HUGE difference, especially when seated for a long time. They are pricey, but I have been using mine for well over a year, and it shows no signs of breaking down. The cover is washable, and I personally know of a couple of people who have trimmed them to fit on/over the seats on personal ECVs/wheelchairs.

 

[coamso]

My 17-yr-old daughter was recently diagnosed with RSD/CRPS. We are planning to rent a wheelchair and try to replace her axillary crutch with a HurryCane. She has also developed skin sensitivity to light touch over her hip (affected area) and was wondering if anyone had any other tips. Did anyone bring a pillow or something to cushion the rides? She loves rollercoasters but I'm thinking we may have to give them up for at least this trip.

I'm going soon and have been considering this. I have RSD/CRPS in my wrist, so I'm planning on using a sling to help me get through the crowds. One part I struggle with the most is how I feel everything more deeply then I used to, but sometimes that means a rollercoaster is a lot more fun now Despite being hugely problematic most of the time.

 

[coamso]

How has your experience of getting DAS for RSD/CRPS been?

 

[SueM in MN]

How has your experience of getting DAS for RSD/CRPS been?

DAS is given for needs related to a disability, not diagnosis.
you would need to explain (briefly) what issues your disability causes that prevent you from waiting in the regular lines.
if you are using a mobility device, like an ECV, you don’t need DAS to bring the mobility device in line. You would need to explain what additional needs you have that are not met by using the mobility device in line.

avoid medical terms - the CMs will likely not know what RSD/CRPS is and your needs related to it might be very different then someone else with the same conditio.

 

[lorenae]

I have had RSD for 13 years following a minor bone break in my lower leg. It sucks. I now have other issues too that make some days very difficult.

I can walk very well most days but somedays I just can't. It's hard because I'm doing ok for a long time, then BOOM! I suddenly have a flare up. But overall it's manageable and doesn't really affect my day to day life at this point, at least not to where I have to totally change my life anymore. If you can do your normal activities, it shouldn't be too tough to manage a reasonable schedule at WDW.

 

[MariMouse]

How has your experience of getting DAS for RSD/CRPS been?

My daughter’s Crps was in her hip so she was in a wheelchair. No DAS needed.

 

[DisneyOma]

My 17-yr-old daughter was recently diagnosed with RSD/CRPS. We are planning to rent a wheelchair and try to replace her axillary crutch with a HurryCane. She has also developed skin sensitivity to light touch over her hip (affected area) and was wondering if anyone had any other tips. Did anyone bring a pillow or something to cushion the rides? She loves rollercoasters but I'm thinking we may have to give them up for at least this trip.

I think you have to secure all objects while on roller coasters, so you'd need a way to secure the pillow.

How has your experience of getting DAS for RSD/CRPS been?

Is there a reason you could not be in a standard queue? That's what you need to convey to the CMs at guest relations.