- Sep 12, 2015
I'm so sorry you're dealing with this, but as you said alt here is some comfort in having a name to pin on it, and at least you know it's not in your head like some would have you believeMy day finally came...I have been diagnosed with Fibromyalgia. While I'm happy to finally have a name for the suffering that I am experiencing, I wonder how long it will take to regain control of my body and mind. We are starting with gabapentin to see how that works then we'll move on from there if necessary. In the meantime, we have a trip to WDW which was planned months ago. I'm determined to go and have a good time. We are renting an ECV from an offsite rental place. I'm hoping that helps. Any other pointer that I need to know before our adventure? We own DVC and this will be our 15th trip. My kids have flat feet and one has severs disease. The little one needs a guest assistance card (whatever they are called now) as he can't stand for any length of time. I should be okay with just the ECV for me? I can use it in lines? This is all new and right now the pain is not in any way under control.
I have chronic pain issues and ME/CFS which is in the same family of diseases but manifests differently. I use a scooter at Disney now. Most of the lines are wide enough now to accommodate, but if they're not they'll do similar to DAS and give you a return time to go in the exit.
The new DAS system may or may not be able to be used with your little one depending if you have another adult handy. If his issue is just about standing they may advise you to get him a wheelchair as they can be accommodated. However if is is able to walk and move and is generally mobile and it's just about the standing you may get one. Reading through the boards it seems each case is decided on its own merit.
Enjoy your holiday
Again so sorry about the diagnosis. I cannot stress strongly enough to rent a scooter. Rent from offsite then no matter where you are staying you have the ability to get around and not rely on whether Disney has enough.Hi, I have recently been diagnosed with Fibromyalgia. In hindsight I've been likely suffering from it for years but symptoms got worse over the last 2 years. I have severe degenerative disc disease to my lower back as well as my cervical spine and I always attributed any pains to that.
The past 4 months have been tough. I had to stop work in January. I am a nurse and my back pain, neck pain and hip pain started interfering with my ability to do my job. I also got headaches frequently and aching to my lower legs and ankles. I also started having severe morning stiffness, as well as stiffness when I had sat for too long. Again, I attributed it all to my arthritis in my spine.
I had started going to massage, but I found my muscles so painful after massage. I didn't understand how everyone always felt so good after going for a massage and I was in pain following. It took an amazing physiotherapist and a chronic pain specialist to help me realize and accept the fibromyalgia diagnosis. I'm still struggling to deal with it.
I have been started on Lyrica which I take twice a day. It has helped with some of the burning pain sensations, but I still get terrible leg aching in the night as well as horrible stiffness in the morning. When I try to increase my activity I pay for it with pain and stiffness.
I have also been getting trigger point injections and will start prolotherapy in a couple weeks. I am not sure how I feel about having that. Have any of you had that done?
I have a trip to wdw planned in July. 2 weeks with my 21 year old twin boys. I'm so scared I won't manage. It was on our trip 2 years ago that I first started having the leg pains at night.
My second last trip tried to get through at least the first part, and then was trashed after the first day. I sucked up my pride and rented either ecv or wheelchair at Disney for the rest of the trip and I can't tell you the difference.
My last trip we were offsite and I wasn't sure an ecv would fit in the rental car so I rented a wheelchair from a recommended offsite company and aside from DH's lack of steering skills it was a great trip. We rented a Disney scooter a couple of days. It was our best trip ever. I got tired. But my pain levels remained pretty much average.
Next time I'm renting a scooter for the duration. I'm totally onsite for the next visit, and offsite the following, but there are now scooters that will fold up into the boot and come apart easily.
I have completely swallowed my pride on this issue at Disney etc. I can be stubborn and in pain and make the trip awful for me and DH, or I can scoot round with independence, relatively low pain, and have a great time. No contest.
Again, go have a great trip and make the most of the time with your boys.