Help with Chronic Fatigue and Fibromyalgia Please

[cheerbop]

hi, my mom has chronic fatigue and fibromyalgia. Any suggestions on how to manage disney? My husband & I are going with our sons and my parents. any suggestions would be much appreciated.

Thanks!!

 

[My2Cinderellas]

my Mom also has Fibromyalgia, so here are the suggestions I would make to her.

1. consider renting an ECV as needed. if her walking stamina is really low, then consider renting from an offsite company for the length of the visit. Even if this is something she doesnt normally need, it will preserve her stamina so she can better enjoy the parks and spending time with the grandkids. Remember that the Florida sun/heat can really tax a person, certain meds she may be taking can lower her heat tolerance as well.

2. If the ECV idea is a flat out no go - then alternate park days with down days. My mom can push herself for 3-4 days, but then needs to crash for 3-4 days to get back to normal. Alternating busy days with slower days is much easier.

3. Be prepared to not be together all the time. both for your sanity and her health. She may need to sleep in one morning even after taking extra meds and trying to be careful of her schedule.

4. do you have rooms yet? If a jacuzzi tub helps her relax, it may be worthwhile to look at a DVC resort, the 1 and 2 bedroom units have jacuzzi tubs.

5. Figure that you will be moving at a slower pace overall, and plan ahead to have some air conditioning breaks, whether a ride, show or mealtime.

Have a great time!

 

[casaazul]

Get one to help with the huge distances you have to travel. We were amazed at how BIG Epcot and AK are. Do what you need to do for your family. I saw lots of people with the ECV that "looked" normal, but I'm sure had hidden disabilities. I made sure my ds was aware of them and we were polite and did not crowd the ECV. We got many thanks from people.

 

[mommyseven]

Do what you can to convince her to use a ECV or wheelchair. While she may be able to walk the first park fine (with breaks) she will most likely be so sore and swollen and just out right be in a lot of pain that the next day will be unbearable.

Taking a mid-day break to swim at the resort pool would help. She could take a cat nap. In the evening, the hot tub (even if she just puts her legs and feet in) makes a difference.

She also needs to be sure to stay hydrated and watch the sun.

 

[hematite153]

Both Chronic Fatigue and Fibro vary widely from person to person. Have some serious, matter of fact conversations with your mother about what she can and cannot do.

I have fibro and would NEVER survive a day at wdw if I had to use a scooter or WC. Sitting for that length of time would lock me up and exhaust me. (Instead, I push my DW, who has different mobility issues, in a WC.)

However, I often wish for the ability to sit somewhere cool for awhile or the chance to take a nap (note: many people with fibro get little out of a nap unless it is hours long). I have found that taking a long (1-1.5 hr) lunch break at a CS place can be re-energizing.

We used to try to get the the parks early, take a break and go back in the evenings. I find that I do better to either keep going or stop completely. In other words, when we try to nap and then go out again I don't have the energy. But, on Jan 1st I managed to keep going from 8am-1am. (Yes, it was crazy but we had 1 day left on old passes and didn't want to buy new ones--don't try asking your mother to do this.)

We now either do alternating long days (with a long lunch and dinner) and days off or only visit the parks in the morning.

If your mother doesn't know wdw, talk to her in terms of hiking trips. How many days in a row could she go hiking? How long could she hike for? Wdw is similar except that the ground is harder.

I would also recommend some discussions about footwear changes and quality. My shoes make a BIG difference in how the rest of my joints react.

 

[diseyore]

Yes, shoes are extremly important. I found if I have the right shoes, I don't get a migraine, back and neck or knee pain as bad.

A hot tub, jacuzzi or just a hot bath at the end of the day will help too. It seems to relax the muscles and I am able to sleep better. Sleep is a main key to Fibromyalgia.

 

[2manypets]

I have Fibro also. I agree with hematite153, there's no way I could sit for an extended amount of time. I get severe back and leg pain. I usually eat 2 TS a day. Just a sandwich or soup (and dessert!) to be able to rest and get into a cool place. My family is used to walking for awhile, then sitting in the shade for a few minutes to let me recoop.

I hope your mother will have a great time.

Judie

 

[hematite153]

A hot tub, jacuzzi or just a hot bath at the end of the day will help too. It seems to relax the muscles and I am able to sleep better. Sleep is a main key to Fibromyalgia.

These are very good points.

If you aren't already, consider staying at a moderate or deluxe since the values don't have hot tubs. (I can never get bath water hot enough to fully soak into my muscles.) I also find that cold (wet) cloths on the sorest parts of my body can help a lot.

Plus, since sleep is such a key element, let your mother choose the bed that will work best for her. You may also want to pack extra pillows so that she can elevate her feet at night.

 

[Judy from Boise]

I have been living with Fibro for a decade. I actually have great stamina, as long as I don't ever raise my heart rate (I have aroebic intolerance). So for me it is slow and steady, with rides and meals acting as breaks. I also take a very hot bath every day. This last trip was by far my best.....since we made our entire schedule around evening EMHs and the P&P party. So, we slept in as late as needed every morning ( getting at least 10 hours), and hit the parks around 11 am or 12 pm.Secondly i have finally found something for my muscle pain (an ATP powder) so I was in heaven !
We are all different ask your Mom to be very honest.

 

[CJRN]

Judy-can you tell me about ATP powder that you use?

I agree with the hot tubs helping. I also have lidoderm patches (lidocaine), that I apply to my low back.

Anyone have experience with magnesium gel? I've been thinking of trying this.

I have not been back to WDW since I've had this, but I think breaks during the day is a great idea.

Best of luck!