Just dx with RSD

[peemagg]

I have just been diagnosed with RSD after having surgery in my left foot. I am wondering what you all think about whether or not I will need an ECV? We leave for Disney in May. The Dr's are starting me on anti-seizure drugs and lumbar blocks followed by PT.

Any of you out there with this problem have any guess for me? I am one of those type people who plan for the worst and hope for the best.

Any help with this would be appreciated greatly!

 

[Cheshire Figment]

May is eight months out. Since this has just happened, you will really not know how you are doing until probably March. At that point you should have an idea of what assistance, if any, you will need.

 

[peemagg]

Thank-you for the help.

 

[debbi801]

I agree with the PP about it being too soon to tell. I was dx with RSD in my left foot (after suffering a bad break) in 2003. Shots, meds, and PT helped a lot, along with exercises I did at home. We did WDW in 2004. I was still in some pain at times, but I was able to walk it. Good comfortable shoes helped a lot and so did frequent breaks. Also, learn to recognize the signs that you're about to have a flare up. I found that if I took steps to prevent one as I started seeing signs, I was able to prevent it or at least lessen it.

For me, the best shoes have been Keens. Something with the way they fit my feet and their arch support seem to help prevent the RSD flare ups. Close fitting sneakers seem to make things worse. Experiment with a bunch of different shoes. I did find that I can no longer wear the cheaper shoe brands if I want to be pain free. I still occasionally get a flare up, but they are very rare.

I hope you feel better!

 

[peemagg]

Thank-you for the help!

I start the lumbar injections tommorrow (yuck!). I hope that something will help soon. I have been off work since the end of May and would (I can't believe that I am saying this) like to get back soon. I need to work to pay for that trip in May!

 

[fivebyfive]

Hugs to you OP.

I was diagnosed with (what my doctor belives) is RSD a few years back. I have been through several Stellate Ganglion Blocks and they are not pleasant.

Some days I've needed a GAC and other I haven't. Luckily for me, majority of my days at Disney I have been pain free, which gives me more reason to visit the mouse.

What I want to say is that I know first hand how people will look at you and 'put their nose up in the air' because at first glance, there is nothing wrong with you. I remember the first time I met with my pain specialist, he said to me "let me guess, people look at you like you're milking it because they simply can't see the pain?" I cried when he said this to me because it was simply so very true. RSD can not be 'seen' as other illnesses can, which makes it so very difficult for people around you to understand the pain you are in.

Just wanted you to know that you're not alone. Good luck with your lumber block tomorrow.

 

[peemagg]

Thank-you for the support.

I know what you mean about people thinking your milking it. I haven't heard the remarks myself, but my girlfriend at work has and told me about it. I thought I might offer to trade feet and allow them to take the shots. They would think twice after the first shot. I know I didn't find it much fun. Oh well, I can take it. It's not the first time with this group. They are not the most friendly. They are the type who is nice to your face, but as soon as your back is turned then they get after you.

Again thank-you for your support and answers. You guys are great!