Any tips for Disney with arthritis in my back?

[scrapbookworm]

Hi everyone!

I've been to Disney World several times, however it's always a difficult adventure for me.

I've had two back surgeries for herniated discs, and still have hardware in my lower back. Since my 2nd surgery I've developed arthritis in my back (particularly the SI joints), fibromyalgia (although most of my "unexplainable pain" in my middle back and sleeping problems have subsided), and Restless Leg Syndrome.

The rides are not what causes me problems. I know what I can ride and can't ride (which is actually one reason I love Disney- there is so much that I CAN do). It's the walking and standing in line that does me in. Within an hour, my lower back is as stiff as a board. Very painful. I'm almost 27 years old, married 8 years, have an almost 6 year old DD, and you definitely can not look at me and tell I've had 2 back surgeries and have arthritis problems.

I always have something like Lortabs or Darvocets with me. However the effects wear off pretty quickly in that situation. In my "normal, everyday life", when in pain, I can take a pain pill and then lie down. One without the other seems to do no good, if you KWIM?

I have considered renting a wheelchair or ECV, but there again, on the outside I do not look like I would have any reason to need one. I suppose I'm too self-conscious and worry about what others think.

When I think back on my trips, I don't dwell on the pain, all I remember is the fun. But, it's a different story when I'm actually there. There is nothing worse than thinking at 3:00pm how am I ever going to make it to the fireworks at 9:00.

Anyone have any tips on dealing with arthritis while at Disney?

Thanks!

 

[padisneylover]

Only on rent an ECV if you have trouble walking distances and standing in lines as you said. My husband has the same problem and he also would not use a ECV because he felt he didn't look like he needed one. This summer at Longwood Gardens I convinced him to try one and both of us enjoyed the trip so much more. Even though he was in pain it wasn't as bad as it would have been if he had walked the gardens and I enjoyed it more knowing he was able to get around better. Don't let the fact that you don't look like you need a ECV from letting you enjoy your trip.

 

[Cheshire Figment]

I have considered renting a wheelchair or ECV, but there again, on the outside I do not look like I would have any reason to need one. I suppose I'm too self-conscious and worry about what others think.

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are travelling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[vhoffman]

Hi!

I have arthritis in my lower spine, too. It usually doesn't cause a problem, however, I recently went through a bout with siacitia (sp?). An orthopedic surgeon prescribed a "Boston Brace". Its a cloth-type thing you wear around your waist, fastens with velcro. It looks like those brace things the guys wear at home depot to support their backs. It has really helped, and I had severe pain. Mr doctor said that the brace relieves about 40% of the weight from the lower spine, making walking and standing easier. Its actually quite comfortable to wear.

I don't think you need a doctor's prescription. You might just try a medical supply type store. Give it a try--can't hurt. Actually I find I can do so much more with the brace, like walk and stand longer. Good luck!

 

[tnhillbilly]

Hello
I may have something that might help you. I also have arthritis and blown discs in my back. I also take the Lortabs for pain, some muscle relaxers, and a nerves system blocker, but some thing that really helps at Disney are my Lidoderm patches. They are non habit forming like the other things and did wonders with me having to stand in line and sitting for long periods. If you would like some more information on them and how I used them at Disney let me know.

 

[scrapbookworm]

Thanks everyone for the advice! I am almost certain I have a soft back brace somewhere. I've used Lidoderm patches, but I didn't find that they helped (although that wasn't while at Disney), so I didn't get my prescription refilled. One thing I'm going to do is when the days get a little longer, I'm going to start walking in the evenings. I need to build up some endurance, and walking is good for the health anyway.

 

[vhoffman]

I second the Lidoderm patches--they really do help. However, you can only wear them for 12 hours, then need 12 hours without it. So you need to choose when you want to wear them. Also, you can wear more than one patch at a time. I found one and a half patches worked for me. Read the product insert about using extra patches, but I believe it said you can use two patches at a time. I really urge you to investigate the Boston Brace. I also take pain meds, anti inflammatory drugs, Lidoderm patches, nothing helped like the brace.

Also, my doctor sent me to physical therapy. They gave me some simple exercises that helped a great deal. The therapist discovered that I had some posture and gait problems that was throwing my back out. Take heart--both my doctor and therapist told me that 90% of the time these lower back problems go away without surgery. I was in such extreme pain that I felt only surgery would help, however, I'm glad I followed some simple methods instead. I felt I couldn't handle a trip to Disney either because of my back. I know how you feel-sometimes just going to the store for a gallon of milk was more than I could handle. I now feel like a "normal" person.

 

[SueM in MN]

I think if you need to use an ECV, you should use one. There are people who will judge (we have even heard people say my DD doesn't look like she needs a wheelchair - and she can't even stand by herself). The only person whose opinion matters is yours.

 

[kimbac3]

I have been struggling with this decision..to wheelchair or not and this has made me feel better. I did no wheelchair when we went this past Nov/Dec and I was in such pain by around 3:00 pm. DH would tell me tomorrow we are definetely rentting a wheel chair. Well the next morning I always feel better. "I'm not in too much pain now..I think I can go with out one today" became my saying every morning!! I finally realize that I would have had even more fun without that constant nagging pain. This time we are renting a wheelchair. I'm just very nervous about it. DH said he doesn't mind pushing me and my kids all said they don't mind me being in one...I know, not really their decision but I was afraid I'd take away from their fun. Don't worry my kids told me that was a dumb thing to think and they'd rather have me not be in pain...apparantly I'm happier that way!!
Anyway...thanks for this!!
Kimba

Please ask yourself the following questions. Here are the suggested answers to go with them.

1. Are you disabled (even temporarily)? Yes.

2. Do the people you are travelling with, such as your family, know you are disabled? Yes.

3. Do you expect to meet anyone you know during this trip who may not know you are disabled. Probably No!

4. Do you expect to meet a bunch of people who you will probably never meet again in your life? Probably yes!

5. Is there any reason at all that you should care what these people think about you? Absolutely No!!

6. Will using a wheelchair or ECV make for a better vacation for you and your family? Absolutely YES!

 

[newtowdw1]

I feel your pain. I'm 38 and have had various back problems and been in chronic pain for almost 11 years. We have similar issues, trust me. I'm not going to give you new therapies/cures to try. I'm sure you're well able to manage your medical treatment. BUT! I rented for our 10 day trip 8/05. Best decision I ever made.

I could focus on WDW, not my pain. I could enjoy my kids' delight, not agonize over whether walking an extra 10 feet to watch them in the fountain was worth it. I could make it up the ramp to Living Seas without DH towing me. I was MORE independent. My DD did not have to worry about ME. DH didn't have to worry about my balance issues, that only get worse when I am tired.

I didn't have to waste a lot of time lying down when I wanted to play.

Was it hard? Yes. I almost burst into tears at EPCOT...why? Couldn't tell you. It's hard to admit that your body has broken down, esp. when you're relatively young and had been active. I didn't feel like people looked at me funny. If they did, well, my ability not to bring down the party was worth it. People who know me and my situation were very supportive before and after we left. People who have never gotten it, still haven't. You know your situation. Bite the bullet, get an ECV, and get on with your life.

I used Walker, and will use them again this year. Do I stil have misgivings? Yep. We're going with an extended family group of people who've never 'gotten it' ... but my family matters more than their opinions. And I won't make my back pain a worry for my family.

Oh, and don't get a 'wheelchair.' DH pushed me in one at WalMart once, and I almost had a stroke. NO autonomy. "Stop here." Nope, just couldn't do as he was told. GRRRR. Drove me wild!!!!!! So, to keep your marriage happy and healthy, go ahead and get an ECV.

 

[fran99999]

I also look like I am not disabled, except for the scar from mid thigh to about mid calf and that was from 19 years ago. I had one of the first 200 knee replacements. Ok it went well but I was a guinea pig for part of it.
I am overweight so people problably think that is my reason for the EVC. I take my DS7 to WDW alone. I use the EVC he walks, now I am a mean mother to lazy to walk with my DS. Then I remember, if I walked with him he wouldnt be at disney we would be home, or we would go and have to leave after about 1 hour of walking/waiting in lines. Yes my gait causes me to walk crooked so now my back is killing me, and I am dragging my bad leg like it is dead. I have a hard enough time shopping for food and I lean on the carriage. WOW glad I cant see myself. OK back to reality.

Rent the EVC. DO not make your DH push U in a wheelchair unless U do this while waiting for an EVC to come back. I dont care how much U weigh. It is Hot and Humid in FL and the extra work of pushing will make even the most tame person cranky. Remember if your back starts to hurt your DH could ride the EVC for a few to stretch your legs and back. Yes people will look at you. I always pretend they are looking because they want a ride as their feet are tired.

 

[Cellthing]

I suffer with Ankylosing Spondylitis (AS), which is a form of arthritis that I define as "Arthritis with a very bad attitude". Since I have young kids, we are still in the stroller phase, so that is how I have survived the past trips.
About the only thing that I have found that helps survive each day, is to know when to rest. There will be times that I just sit out a ride to rest, it isn't fun, but standing in line for a long time isn't either. Since AS tends to make the back "stoop" over, it is hard to look up, so I actually volunteer to carry the backpack with all carry in stuff, the weight keeps me upright somewhat.
As far as pain management goes, I have my usual arsenal of meds, I just have to put up with the pain, or, deal with the affects of the meds. I try to keep my mind off of the pain, if I think about it, the pain will take over. I try to use my Disney trips to take time away from my condition.
I have looked into renting a ECV, but at 36, I am not comfortable with getting one. I have been asked by my Mother in Law before to rent one, so that I could have a good day, but personal pride gets in the way. I as well as others have a hard time accepting that our conditions warrants an ECV rental. I would like to prolong the use of an ECV as long as possible.
Bottom line, it should be your personal decision to rent one, unless you are travelling solo, you not feeling good, doesn't just affect you, it affects all in your party. They should be aware of your condition, and support you in renting an ECV.

Craig

 

[lauren0309]

My husband had hip replacement surgery and needs the other one done too. In the meantime, we are going to disney in April. How much is it to rent an electric wheelchair and how do you go about reserving one?

 

[SueM in MN]

My husband had hip replacement surgery and needs the other one done too. In the meantime, we are going to disney in April. How much is it to rent an electric wheelchair and how do you go about reserving one?

What you want to look for is an ECV (also called electric scooter).
Electric (or power) wheelchairs are a bit different; you can't rent them in the parks or from most of the off-site rental places unless you already drive one. (They take more practice to drive and since they are a lot more expensive, they only rent them to people with experience).

Anyway, there is pretty complete information about renting ECVs in the disABILITIES FAQs thread near the top of this board.
Advantages of renting from the parks is that you don't have to worry about transporting it to the parks. A disadvantage is that their might not be any available when you arrive and they can't be reserved at the parks ahead of time.
There are also some off-site rental places listed in the FAQs thread. Their prrices tend to be a little less than the parks and once you have it, you can use it at your resort as well as at the parks.

 

[vhoffman]

Just remember that using a wheelchair or ecv is a personal decision. Don't push someone into using one just because you think its best for them. I have arthritis and walk with a cane. I am able to walk fair distances, and usually manage quite well at Disney. Of course, I know when to take breaks, rest, etc. If I want a wheelchair, I'll ask. I really am sick of those who think a wheelchair would be such a great idea for me, then proceed to literally insist I'm going to use one. I'm not holding anyone up or slowing anyone down (we don't go in a group, just our family), and I do just fine. What gripes me is people literally running after me in airports, etc with a wheelchair, then acting bewildered and offended if I decline it. Really, I'm an adult, let me make my own decisions!

Also, one doesn't just get into an ecv or wheelchair and start riding around. There is an adjustment and learning period. The one time I did use an ECV I experienced more anxiety just trying to figure out how to use it and try to kep from running people over! I felt I really couldn't see anything, because I had to "keep my eyes on the road". You're not at the level of conversation, either,so you're essentially isolated from your group. Don't get me wrong, if you feel an ecv is for you, by all means go for it and to he--with what other people think. its what you think that matters, but if you're going to be anxious all the time in it that's something you need to consider as well.