Doing Disney with chronic widespread pain

[laurainsem]

So I'm 36 and have done WDW a couple times in the past, though I was much healthier. Since then I developed a facial pain syndrome called Trigeminal Neuralgia, plus my hypermobility syndrome has become significantly worse and I now also have arthritis. Having all of this makes it so I'm pretty inactive on a day to day basis just because it's too painful to do much.

As you can imagine, I'm a little nervous about how I'm going to handle so much activity at the parks. I don't want to have to have to compromise a whole lot of fun just because of pain. We will have a 2 y/o with us so that will motivate me to go back to the resort everyday for an afternoon chill out. What other things though can I possibly do to help keep my pain as low as possible? Any help you can give me would mean the world. I'm so excited about this trip. Since my last one I've landed on disability, had 7 more surgeries, a minimum of 1 procedure every week for the last 3 years, staph and a wound vac, and most recently a broken foot in 2 places. So as you can tell, I haven't had a whole lot of "fun" going on. This is more needed than I think I realized inititally.

Thank you all and I pray any pain you may have is under control today.

 

[gap2368]

Hi I have a very good friend that has a lot of pain ( her pain is so bad that if the strap of her bag touches her lag in just the right place it hurts her)

A few things she dose ( and some of them you may not like)

she brings all her meds she is on a good number of pain meds muscle relaxers ( and maybe some other things)

if she is going to be doing something that could case pain ( like some times eating) she will premeditate

she dose not go on any roller coaster ( she did space mountain in the past and she stopped because it bounced to much and caused her pain)

even thought she can not do all the rides she still has a great time we do pooh buzz things like that since you have a little one you can do the ones the little one can do

first aid has some OTC meds but nothing very strong they have ice if that will help and a place to lie down

 

[Selket]

I don't know anything about the conditions you have (except arthritis - but I'm not sure what part of your body is affected - mine is the knees). It may help to deal in specifics such as whether your ability to walk or stay on your feet is affected and whether bumpy things like roller coasters would bother you.

Just from what you've said, with my knee arthritis I've found it VERY helpful to rent an ECV from an off-site place and use it in the parks and resort. You can get a portable one if you are staying off-site and have friends that can take it apart (that's easy) and put in the car for you. I also had a very bad bicycle accident last Fall and had a traumatic brain injury. There is a thread with some good info in it (probably with traumatic brain injury) in the title. I don't know if your facial pain syndrome would share any features with a TBI but I found I had to be careful about what rides I went on, etc. I have chronic headaches now and some of the rides were too much. Taking a break from the crowds is also a bit easier with an ECV because - well - you can find an out of the way spot and make your own place there to sit and people watch or relax as you have your seat with you - lol! I found the ECV to offer that buffer that worked well for me.

We didn't take afternoon breaks but I know that works well for some people. We went to the parks later in the day (NOT a good idea if your heart is set on riding the big attractions other than what you have fast passes for). I needed to sleep in some days - lol!

Most of all - go in with a good touring plan and fast passes and temper your expectations (about seeing and doing it all - if you have those expectations) and enjoy just being at WDW!

 

[disneyseniors]

I feel your "pain"! I, too, have an invisible illness which causes constant widespread pain ( not aches but actual pain). I won't lie, Disney is difficult for me. I take my prescribed pain medication, and increase this as needed (per Dr's orders). I also take OtC anti-inflammatories daily which helps some. I do better in the AM, so we do rope drop, move slowly and rest a lot, eat in the park, then head back to the room for much needed rest and recharge. Then in the evening we take it even more slowly. If I can go a while longer in the pm, we do. If not, we sit for a while and then go back to the room. I have not used an ECV yet, but used a wheelchair last year due to plantar fasciitis. I know that one day I will need one, but not now. I would not hesitate to use a wheelchair or ECV in your condition; anything to help with mobility and to make your trip easier.
Good luck, and you are not alone

 

[Mrsjvb]

Mobility device. period. you can use it as much or as little as you need to. doubles as a rolling luggage cart when you aren't ( although the child should NEVER under ANY circumstances EVER be on an ECV) as Gap said, take Pre emptive drugs. ( always start with a double dose first thing in the am then a single dose at normal intervals( and I use a timer to make sure I am not late with it) For me, Rope drop and bailing early evening works best, we eat a nice leisurely dinner at the resort or Disney Springs. followed by a hot tub session( we stay Deluxe usually) and bedtime before 10. and do not try and park hop, or do a full park in one day. we always stay 7 days minimum, with built in down day( no parks, just DS or resort lounging) about halfway through. for us, Epcot and AK are the ones we visit more than once to get in everything. for you, that may be MK due to your child. we also do at least one sit down meal in the parks.

 

[NeuroCindy]

I have TN! I've never met anyone else that has it! I haven't been to WDW since I was diagnosed though.

 

[laurainsem]

I have TN! I've never met anyone else that has it! I haven't been to WDW since I was diagnosed though.

Hi Cindy! I'm actually a part of a couple facebook support groups for TN, you should totally join us! If there is any way I can be a support let me know!

 

[laurainsem]

Thank you so much everyone! In regards to where my pain is at, really it is widespread (head to toe). My legs/hip/lower back/neck/jaw/face are the worst hit spots for me. Thankfully my facial pain condition does not mimic a TBI in anyway, but it can effect your ability to concentrate when bad. I'm thinking you all are on to something with the ECV. I'm not a fan of it just because of pride but if it helps with my pain and stamina than it may be worth it. Are they able to put them on the buses? We are staying at the Art of Animation resort so I'm curious how to fit one on those cramped buses. Is there a place you recommend renting from?

 

[DisneyMim]

Hi!! I have fibromyalgia and visit Disney often. First I will say I have been going forever so I don't feel I have to go everything every time. I have had Fibro for 12 years now and have gone to Disney about twice a year. I just wanted to give you a little background. We are dvc members and rent a car every trip. We have breakfast in our villa. We are not, and have never been rope drop people. We get to the parks when we get to the parks. In other words I can take a long time getting ready in the morning. I feel my worse first thing and until the meds kick in I have a hard time. Thank goodness my family knows and are very understanding. Now I will tell you my kids are adults so with a little one you will have a harder time than me but don't worry, your child will take your lead and as long as you are excited they will be too. Take your time. I find that having a cs lunch and a ts dinner really helps. I can sit and recharge and I will admit I do take a little longer than most people. Alright maybe a lot longer. Lol!! It really helps me though. If you need to rent an ecv do not hesitate. I am not there yet but if I need one in order to enjoy myself I will get one. Often times I sit out some rides and find a place to sit and wait for my family. I know I am all over the place here but just trying to give you some ideas. Basically just listen to your body. If you need to rest then rest. Do not try do everything. Sometimes great memories are made from little things that you don't even think about. It's not all abut rushing form ride to ride (although fp does help).

I hope you have a wonderful trip and enjoy the magic!!

 

[laurainsem]

Thank you, that does help a lot. Thankfully I get up early as it can take me an hour or more to get moving, depending on how the night was. I find late at night is when I'm at my worst so that will actually help as I'm a rope drop person. I find if we do the parks in the morning it leaves the hot, busy hours to rest and recoup before a little bit of evening activity. I have no idea how this trip will go for me as I'm in a lot worse shape then my last trip in '09. I've had 7 more surgeries and new diagnosis' that really impact my body. I think pacing myself will really help along with a scooter. I have to remember it's not that I have to use it everyday but to at least have it as an option is key. My best friend and her family are going with me (the little peanut is their daughter) and she said I really should get a scooter. Katie knows me so well so it helped to hear her opinion. I love that she is genuinely supportive and I know will help keep me from overdoing it. Having a toddler around too will keep us in line as she will definitely need a nap each day lol!

 

[Paula Sedley-Burke]

I hear you on the pain front. I have auto immune disease of the bowel, joints, liver and eyes.

I take an afternoon break.

Accept my limitations each day is unpredictable I cannot plan. We do parks mornings only.

I get a DAS card.

Treasure the days I can do somethings and not focus on those that I can't

We do book a few ADRs but are prepared to cancel. I would rather have a chance. If we loose the deposit we roll with the punches.

Eat well , keep sugar levels up. A tired lady is an intolerant lady!

Wear a good sun protecting hat and sun screen

Drink plenty

Find news rides and attractions more to our level. Shows or 7DMT rather than Tot.

My rope drop or wishes days are over!

I still am happier at Disney in pain than at home.

I take no pain killers. For me it's futile.

Good luck!

 

[gap2368]

Mobility device. period. you can use it as much or as little as you need to. doubles as a rolling luggage cart when you aren't ( although the child should NEVER under ANY circumstances EVER be on an ECV) as Gap said, take Pre emptive drugs. ( always start with a double dose first thing in the am then a single dose at normal intervals( and I use a timer to make sure I am not late with it) For me, Rope drop and bailing early evening works best, we eat a nice leisurely dinner at the resort or Disney Springs. followed by a hot tub session( we stay Deluxe usually) and bedtime before 10. and do not try and park hop, or do a full park in one day. we always stay 7 days minimum, with built in down day( no parks, just DS or resort lounging) about halfway through. for us, Epcot and AK are the ones we visit more than once to get in everything. for you, that may be MK due to your child. we also do at least one sit down meal in the parks.

Never ment letting the child on an ECV but letting them sit on a wheel chair this could let the OP put more wait to help her walk was all I meant I have seen plenaty of people do this. I would never say oh just get a wheel chair for the fun of it or let the child in it and have them go crazy I am just saying the OP ( or parent ) should be in controll of it

 

[Selket]

We are staying at the Art of Animation resort so I'm curious how to fit one on those cramped buses. Is there a place you recommend renting from?

I rented the portable scooter model from Buena Vista Scooters. They are a "preferred provider" (there are others) which means the company can drop off and pick up the scooter from the bell services at your resort so it is very easy for you. It would be there when you arrive and you drop it off the morning you leave. I like the portable model because it's a bit smaller and has just a great turning radius - very very easy to operate.

The busses can seem daunting to get into that first time but the driver will tell you what to do. You will load first and your travel mates will come on with you. They tie the scooter down and you can sit in a seat (or in the scooter if needed). The drivers are excellent at explaining to you how to park the scooter inside the bus. I suggest not worrying about that part and just do it - lol! Get some practice driving it around the resort before you get on a bus so you know how to go in reverse and so on.

Good luck!

 

[loves to dive]

My mother had Lupus and we took her many times before her death. We would rent a manual wheelchair from Disney at the parks. When my son was young, if she didn't want to ride in it (it helped her to walk sometimes) she would push and he would ride, as she got worse and he got older he took over the pushing duties. We didn't do the EVCs because she wasn't a very good driver and frankly we just had more control over the manual wheelchair and we didn't have to worry about getting it on and off buses. Fast forward many years and my son, who was a corpsman in the Navy, got some weird virual something while working which moved into his spinal cord and caused nerve damage around his spine. He is in constant pain and has such severe back spasms he once bent a needle while they were giving him a shot to control the spasms. He was at Disney in March but didn't get a wheelchair because for him standing actually feels better. We always went slow, stopping and resting when ever he needed and did no severe roller coasters. We usually went back to the resort around 2 or 3 and got in the hot tub for a while (why do people let their little kids jump into the hot tubs when there is a pool there?) and sometimes we would go back to the parks and sometimes he was just in too much pain. He took his meds with him and also used OTC meds. The key for him was to listen to his body, if it said stop and rest we stopped and rested.

 

[laurainsem]

I rented the portable scooter model from Buena Vista Scooters. They are a "preferred provider" (there are others) which means the company can drop off and pick up the scooter from the bell services at your resort so it is very easy for you. It would be there when you arrive and you drop it off the morning you leave. I like the portable model because it's a bit smaller and has just a great turning radius - very very easy to operate.

The busses can seem daunting to get into that first time but the driver will tell you what to do. You will load first and your travel mates will come on with you. They tie the scooter down and you can sit in a seat (or in the scooter if needed). The drivers are excellent at explaining to you how to park the scooter inside the bus. I suggest not worrying about that part and just do it - lol! Get some practice driving it around the resort before you get on a bus so you know how to go in reverse and so on.

Good luck!

This info is SO helpful, thank you! I think the portable model is a great idea. I'm feeling less weird about renting an ECV now that all of you have encouraged me with it. I really appreciate all the support and helpful tips. We are going for 10 days so will be able to take the parks nice and easy, which is great for me and the toddler!

 

[laurainsem]

My mother had Lupus and we took her many times before her death. We would rent a manual wheelchair from Disney at the parks. When my son was young, if she didn't want to ride in it (it helped her to walk sometimes) she would push and he would ride, as she got worse and he got older he took over the pushing duties. We didn't do the EVCs because she wasn't a very good driver and frankly we just had more control over the manual wheelchair and we didn't have to worry about getting it on and off buses. Fast forward many years and my son, who was a corpsman in the Navy, got some weird virual something while working which moved into his spinal cord and caused nerve damage around his spine. He is in constant pain and has such severe back spasms he once bent a needle while they were giving him a shot to control the spasms. He was at Disney in March but didn't get a wheelchair because for him standing actually feels better. We always went slow, stopping and resting when ever he needed and did no severe roller coasters. We usually went back to the resort around 2 or 3 and got in the hot tub for a while (why do people let their little kids jump into the hot tubs when there is a pool there?) and sometimes we would go back to the parks and sometimes he was just in too much pain. He took his meds with him and also used OTC meds. The key for him was to listen to his body, if it said stop and rest we stopped and rested.

I am so sorry about your mother passing and about your sons pain. It is terrible when anyone has to live with chronic pain, especially when their young. I've been living with chronic pain since I was 7 thanks to falling 2.5 stories off the gym ropes at school. Why they allowed us little guys on them without proper matting is beyond me. I've learned to appreciate life much more with all the pain, the good days are savored and the bad days are spend in bed with my furbabies and a good movie. Blessings to your family, i'll be praying for your son.

 

[laurainsem]

I hear you on the pain front. I have auto immune disease of the bowel, joints, liver and eyes.

I take an afternoon break.

Accept my limitations each day is unpredictable I cannot plan. We do parks mornings only.

I get a DAS card.

Treasure the days I can do somethings and not focus on those that I can't

We do book a few ADRs but are prepared to cancel. I would rather have a chance. If we loose the deposit we roll with the punches.

Eat well , keep sugar levels up. A tired lady is an intolerant lady!

Wear a good sun protecting hat and sun screen

Drink plenty

Find news rides and attractions more to our level. Shows or 7DMT rather than Tot.

My rope drop or wishes days are over!

I still am happier at Disney in pain than at home.

I take no pain killers. For me it's futile.

Good luck!

Awesome tips, thank you! I have stomach troubles so may not be able to utilize all my dining credits food wise, but still plan to do the ADR's for the experience (everyone else can chow down). I'm starting to really get excited, the fun of planning is helping keep my mind off the bad pain I have had this week.

 

[Paula Sedley-Burke]

Awesome tips, thank you! I have stomach troubles so may not be able to utilize all my dining credits food wise, but still plan to do the ADR's for the experience (everyone else can chow down). I'm starting to really get excited, the fun of planning is helping keep my mind off the bad pain I have had this week.

I have autoimmune disease of the bowel so understand the eating issue. I don't get the DDP as I geberally eat smaller portions from the kids menu. I find disney very good with my food issues. I hope you have a magical time.

 

[laurainsem]

I have autoimmune disease of the bowel so understand the eating issue. I don't get the DDP as I geberally eat smaller portions from the kids menu. I find disney very good with my food issues. I hope you have a magical time.

Thank you, I have no doubt even with all my health problems it'll go great. I have gastroparesis so my food issues kind of come and go. I have good days and bad days so I'm just hoping it'll be good days for our trip. If not, than I will deal with it and make the most out of each moment. Eating off the kids menu is actually a really great idea; thanks!

 

[tami82]

I understand it's hard. I too have body aches frequently along with stomach issues lately and worry about our trip and not feeling well. We have two months so I am preparing myself by taking long power walks a few times weekly and just building up each time. I also make sure I have plenty of Advil or other medication I may need. Also eating healthy sometimes helps how you feel. To keep energy levels up when you are at the park make sure to eat something good and healthy if possible say a chicken salad, etc. and eat a little more often smaller meals or small snacks. if you eat too much at once or badly it will make you even more sluggish. Stay hydrated and go on rides with ac and short lines just to get a break. Also go back to,resort to lie down and put your feet up for an hour or two so you will feel more refreshed. I find as long as I do these things and eat healthy to keep energy levels up I am fine for the whole week.