Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 02-07-2012, 03:48 AM #31
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Originally Posted by catra121 View Post
Thanks...i will definitely post an update of how things go once I am allowed to go back. I am an assistant store manager at a retail store so for me the big obstacle (other than getting some of my symptoms under control so I could drive again) is my endurance. After spending most of last year stuck in a wheelchair not able to stand or walk at all, it has been a long road to build up any sort of endurance...but I am finally there. I still will require the accomodations of being able to use my walker and to be able to wear gym shoes/gloves/scarf as needed...neither of which should be difficult to accomodate. But with those two things I should be able to do my job. I've worked so hard for this and I know going back won't be easy but I am just not cut out for this sedentary lifestyle that has been forced on me by the RSD. Can you say stir crazy?

I am also hoping that once I go back and am in a situation where I am "forced" so to speak to move around that this will improve my health over all. I know from when I was working back when I got the ankle RSD under control that I felt a lot better mentally and that work actually helped me to take my mind off the pain. The pain was always there of course but being focused on the many many things that you have to juggle on a daily basis at work sort of pushes thoughts of the pain to the back of my mind. At least...I HOPE that's how it works this time too.
Good for you, I am also one that hates being cooped up. I used to work on insurance claims as a Quality Assurance person, so with the loss of most of the use of my right arm it is extremely difficult to go back to that, if we ever get the pain and spasms under control. Wearing clothes like that must be a serious help I am betting, I barely get my jeans buttoned sometimes.

Mentally I think I am good, I love your attitude and exuberance about returning to work (hoping it is infectious!!). Unfortunately my focus is getting through each day, with my goals being finding helpful doctors and therapists. Maybe I should add finding a girlfriend to that lol once the weather warms up?? With 2 disabilities in my right arm, when I was allowed to search for work no company wanted me because of the potential liability. Ahh well, maybe in 2013

Oh, and tell us when you are running that marathon!!!
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Old 02-07-2012, 04:07 AM #32
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Good for you, I am also one that hates being cooped up. I used to work on insurance claims as a Quality Assurance person, so with the loss of most of the use of my right arm it is extremely difficult to go back to that, if we ever get the pain and spasms under control. Wearing clothes like that must be a serious help I am betting, I barely get my jeans buttoned sometimes.

Mentally I think I am good, I love your attitude and exuberance about returning to work (hoping it is infectious!!). Unfortunately my focus is getting through each day, with my goals being finding helpful doctors and therapists. Maybe I should add finding a girlfriend to that lol once the weather warms up?? With 2 disabilities in my right arm, when I was allowed to search for work no company wanted me because of the potential liability. Ahh well, maybe in 2013

Oh, and tell us when you are running that marathon!!!
Marathon? I don't think so...lol! My focus has been solely on getting myself back to work and getting back the quality of life...after months and months of being bounced around by doctors until I found one that actually was willing to help me achieve my goals.

But next on my list after I get back to work and figure out how to balance my life with the limitations of the RSD: Disney World! Lol! That's probably still another year off yet but with a new goal in mind it will keep me focused on continuing my therapy (which I do all on my own now and not as part of a program or anything) and pursuing better treatment options like (hopefully) tDCS. Honestly...setting goals for myself and then working with a doctor to achieve those specific goals has been the best way for me to go instead of just letting myself be at the mercy of the doctors. I ended up with a very compassionate doctor who has just been a godsend.

I really hope you get on the right track this year so that you can get back to living your life instead of just surviving and making it through. Finding the right doctor who can get you there is such a huge piece of the puzzle. If you can get that nailed down I am sure that you will get your life back. It'll never be the same of course, but once you have lost so much just getting even a small piece of that back feels like such a big win. At least...I know it feels that way for me. You've got the right attitude so I have no doubt that you'll be able to accomplish great things once you find that doctor who wants to and is able to help you.
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Old 02-07-2012, 04:17 AM #33
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Marathon? I don't think so...lol! My focus has been solely on getting myself back to work and getting back the quality of life...after months and months of being bounced around by doctors until I found one that actually was willing to help me achieve my goals.

But next on my list after I get back to work and figure out how to balance my life with the limitations of the RSD: Disney World! Lol! That's probably still another year off yet but with a new goal in mind it will keep me focused on continuing my therapy (which I do all on my own now and not as part of a program or anything) and pursuing better treatment options like (hopefully) tDCS. Honestly...setting goals for myself and then working with a doctor to achieve those specific goals has been the best way for me to go instead of just letting myself be at the mercy of the doctors. I ended up with a very compassionate doctor who has just been a godsend.

I really hope you get on the right track this year so that you can get back to living your life instead of just surviving and making it through. Finding the right doctor who can get you there is such a huge piece of the puzzle. If you can get that nailed down I am sure that you will get your life back. It'll never be the same of course, but once you have lost so much just getting even a small piece of that back feels like such a big win. At least...I know it feels that way for me. You've got the right attitude so I have no doubt that you'll be able to accomplish great things once you find that doctor who wants to and is able to help you.
WHEN we get my pain under some semblance of control, I want to do something I have never done before and even had to cancel in 2010 (get your mind out of the gutter lol) - have a vacation of any kind, anywhere.

Disney World?? You are ambitious! Love it! All that bouncing, noise, etc. will be a real pure test and I really hope it is pure enjoyment for you. I am hoping just to visit another state I have never been to for a week or so and be around nice people so i can expand our friendship.

By the way, I use facebook for chat if anyone wants, message me and will give info
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Old 02-07-2012, 04:30 AM #34
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Disney World is my happy place...I've been there over 20 times in my life (and I'm only 28) and never had a bad time. My parents even renewed their wedding vows in Disney in 2007. I was able to go in September 2010...a year after I got RSD in my ankle when the pain was being decently managed by meds. it was a different sort of trip...really had to take it easy...but had a fantastic time. Now with RSD in my upper body too...I am very nervous. But Disney is very good in terms of access for those with disabilities so I am hoping that I can make it work. But that's a long way off...gotta get back to work first and then focus on the next goal.

I hope you can find some way to take a vacation...hopefully some place warm. I love to travel but I know I will be very limited the way things are at the moment. My boyfriend's family has a house on a lake that we go to sometimes and it is honestly just nice to be somewhere different...even if I can't go out and do much. Just sitting out on the deck and looking out at the lake was nice. But getting there is awful these days...that first day after we get there I am a mess. It's good if we can stay for a week though because then I have time to recover, enjoy myself, and then go through the painful ride back home. But it's worth it just to get away for a few days.
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Old 02-07-2012, 05:08 AM #35
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Originally Posted by catra121 View Post
Disney World is my happy place...I've been there over 20 times in my life (and I'm only 28) and never had a bad time. My parents even renewed their wedding vows in Disney in 2007. I was able to go in September 2010...a year after I got RSD in my ankle when the pain was being decently managed by meds. it was a different sort of trip...really had to take it easy...but had a fantastic time. Now with RSD in my upper body too...I am very nervous. But Disney is very good in terms of access for those with disabilities so I am hoping that I can make it work. But that's a long way off...gotta get back to work first and then focus on the next goal.

I hope you can find some way to take a vacation...hopefully some place warm. I love to travel but I know I will be very limited the way things are at the moment. My boyfriend's family has a house on a lake that we go to sometimes and it is honestly just nice to be somewhere different...even if I can't go out and do much. Just sitting out on the deck and looking out at the lake was nice. But getting there is awful these days...that first day after we get there I am a mess. It's good if we can stay for a week though because then I have time to recover, enjoy myself, and then go through the painful ride back home. But it's worth it just to get away for a few days.
just going to hope i haven't gained too much weight too, i am still active (indoors) when my pain and spasms allow, i eat more fresh foods, veggies, and fruits but still seem to be gaining ugh!

Guess we need to start our own weight loss program for us with RSD and all and include family and friends :P
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