just curious to know if anyone is working with the rsd,an to get an idea of what kind ,an how you handle the pain with either standing,sitting for long periods at a time.an also how do you keep your focus for long periods on what your doing.with all of that.i have to keep moving,cannot sit still,if laying down constantly squirming all the time.would love to try an do something just don't know what.i also know my options are limited with all the meds in which i'm on.

I am way new to all this and I am having the same problem. For me though I have to take care of my disabled son who has had a brain injury so through the pain I have to push myself. Its very difficult daily to deal with the pain issues. Marsha

I work online from home doing sale. The possibility of being able to comit to getting to a job on time became a thing of the past a long time ago.

Dawn

Welcome and WOW-Sorry to hear that you have RSd. To get comfortable from being squirmy, I soak in a warm epsom salts bath and I use Arnica Salve afterwards. I have RSD since 2007-Hang in there Fondly-Carol

Am wondering the same thing. It would HAVE to be some type of work from home for me where flexible time frames are acceptable. We don't have the money right now for me to go back to school for retraining. When we do I'm not sure I'm capable of committing to a set schedule.

i'm with you.

Check with your State's Workforce Investment Office to see if they have special training programs for you - under certain conditions you may qualify for re-training. It's worth a shot.

I was out of work on WC for a year with my RSD when it became too acute for me to manage - it was pretty awful since I have always worked full time. Low dose ketamine infusions helped me get better enough so that I could return to my job in June. I am a CPA so most of my work is done at a desk, it's all "light duty." Before I tried ketamine I had done just about everything else - blocks, meds, lidocaine infusions and tons of PT. Ketamine is the only treatment that ever really worked well for me (although lidocaine infusions were very effective for the terrible burn).

I think a lot of my brain fog was caused by the meds, but some was from the RSD also when it was in the acute stage. I am off all the heavy meds now, or I could never do my job. I will take fiorcet for my headaches. But usually nothing stronger when I'm working.

The best of luck to you. Never ever give up trying to get better or finding a treatment that works for you. XOXOX Sandy

Bigsave, I pop in every now and then. Wanted to give you a bit of hope, or something.
I certainly don't want to sound like I'm blowing my trumpet or anything like that, just give you an idea that along the track things can turn out differently that they may first look.
I'm 25, had rsd for going on 5 years and when I first had to contest with this beast I thought I was going to have to let go of my dream before I had even started on the road.
But here I find myself 7 clinical weeks left of my PT degree despite widespread rsd, and now GI and bladder issues too.

I am doing something I love and its worth all the pain and stress (well, depends when you ask me, at night after a long day on clinical I frequently wonder why I put myself through this, but by morning I'm ready to put myself through it all over again... something about the short term memory from head injuries lol)

There are lots of ways to get around stupid rsd stuff, not everyone is able to but its well worth trying if you can.

I think for me its a combination of fulfilling my dream, being told it was impossible and wanting to prove everyone wrong, feeling like I am accomplishing something, and the inspiring people I get to meet doing my job... nothing like seeing a bilateral below knee amputee walking unaided on their prosthetic legs for the very first time!

Don't give up if at first you don't succeed... with perseverance and pigheadedness its worth trying at least 3 more times... lol

Felicia

Hi BigSav. Like Felicia who posted last, I don't want to blow my trumpet as she put it...but I hope that my story can give you a little hope. I read a story on one of the main RSD websites and it gave me lots of hope...so maybe my story can give you some.

I am 26 years old and I got hurt at work a year ago which led to my RSD in my left ankle. I think I am lucky that it only took 5 months to be diagnosed with RSD...although those 5 months were some of the most frustrating of my life trying to get a diagnosis for the unbelievable pain that I was experiencing.

Because it was a work injury...work comp has been a nightmare. Wasn't able to get a lumbar sympathetic block until after 6 months after my injury. Don't know if it would have helped if I had been able to get the approval sooner...but it wasn't able to help with the pain (although the coldness all but disappeared after the block).

I continued to work full time from the time I got hurt until 5 months after the injury. I am an assistant store manager at a bug box retailer. I am on my feet all day and I was getting by on sitting only duties, using a wheelchair so I could get around the store and crutches to get around. By the 5 month mark, my body just could not handle the additional pains that I was getting as a result of using the wheel chair and the crutches. My doctor took me off work completely until I could get the block done and move on from there.

From the timing, you can see that this was the same time I got the RSD diagnosis. I will forever be grateful to my doctor for the quick diagnosis (I had only seen him twice when he said he was sure this was what I had...although I went through a lot of docs BEFORE him which is why it was 5 months after the injury). He was a bit forceful with me...telling me that I HAD to walk on it. He prescribed physical therapy (pool therapy to start) and the block.

Diagnosis in hand I went online and read everything I could possibly find about RSD. I was on the one had extremely excited because it was like a light went off and I was convinced that this is what I have. After months of docs saying they didn't know and ignoring some of the things I did tell them (like the coldness in my leg and the zero relief from Vicodin, etc)...I found every symptom I had in the stuff I read (although I didn't have ALL the symptoms...but then this was something that I read was normal and so I was not discouraged). On the other hand...I was devastated because it looked grim. But then I read this story. It was LONG and detailed about this one woman's trials with RSD. But the moral of the story was that by PUSHING herself to the limit of what she could handle she was able to gain back a good deal of the function that she had before the RSD.

A light went off for me. I thought to myself, "I'm 26 years old. I do not want to live the rest of my life in a wheelchair." I love my job and that month off (not to mention the 5 months before) were just awful for me. Not only was I in pain, but I was completely miserable. You just don't know how much you take for granted until you can't do it anymore. So...I PUSHED. I still do my physical therapy exercises...even after being out of PT for 6 months. I am working 45-60 hours a week, on my feet, without the aid of crutches or a wheelchair. So...how do I do this with the constant pain that I can't even remember being below a level 6 on the pain scale (and that's on a REALLY good day)?

Well...there's the medication which helps a little (Lyrica, Meloxicam, Tramadol, and Doxepin). Then there's the anti-inflammatory cream (Voltaren) which helps a little. Then there's the Lidoderm patches which help a little. I have a microwavable heating pad that I can wrap around my ankle and walk with which helps a little. I take hot baths which help a little. And all those littles make it something that I can DEAL with...but the single biggest thing that lets me get through a day of work is that I let myself get so wrapped up in the million things that go into running a store that I am able to push the pain back to a corner of my mind. Not all the time...and there are those times (quite often) where the pain reaches a point where you just cannot NOT think about it. But...day to day...I make it through. And I know that if I didn't push myself like this every day...if I didn't force myself to get up every day and MOVE...I wouldn't be where I am now.

I have gotten so much function back that I can function almost normally to someone who doesn't know what I have. I limp slightly...I cannot wear gym shoes because of the pressure they put on my ankle...I have to go up stairs one at a time and lean HEAVILY on the railing...I cannot push a shopping cart to go grocery shopping...I cannot kick a door shut with either foot...I can't dance...I can't run...but I CAN work. It take committment that I didn't really know I had. And it is HARD...every single day is HARD...sometimes I think I should just curl up and not move...but then I think of how far I have come and I just remind myself that I am 26 years old and I do not want to live my life in a wheelchair. Everyone has to have their own motivation of course...but for me it's the pursuit of being NORMAL. And I will never get there 100%.

I had a moment just the other day when I was walking up a hill after fishing (the vibrations of the boat are just another test for me of how much I can handle) and I felt this enbelievable desire to run up the hill. I couldn't of course...it was out of the question...and I got so terribly upset. Made me want to cry. So it's not that there are no limits or that I can ever be normal. But by being careful, knowing my limits, and pushing those bounds I have been able to get back to work. It takes a lot of things, all coming together to get me to the point of being able to deal, and then it's the mental desire and committment to make it happen.

Sorry that was so long, and I apologize if it sounds at all preachy. I know there are a lot of people that just can't do it and their individual cases may be so completely different from my own...but that's my story. Oh...another thing that has helped me (and I know that it has been HUGE and that a lot of people don't have this going for them) has been the support of my family and my boyfriend who I live with. It's easy I think to understand the impact this has...but having those people to help you when you need it and push you when you start to slack is priceless. I can't tell you how upset I would get at my boyfriend when I was trying to relearn how to walk (at the age of 26...nice, huh?) and he would yell, "Walk normal!" across the room then I would be doing something like walking to the bathroom. Was I upset? Yes. Did I need it? Yes. Those people who can push you when you can't push yourself, but who will bring you things and do the grocery shopping because you can't...there's just no way to quantify how important that is. Not for the working...which is the question that I was trying to answer...but for getting you to the place you need to be mentally/physically to be able to do it. I mean...it's not enough to just make up your mind that "I'm going to go back to work and not think about the pain." It takes a lot of time and work to get yourself there.

My first days back at work after being off...it took me 30 minutes to get from the front door to the office. I had to stop and hold onto racks just to stay upright for the walk. But over time it got easier and the more I was able to do, the easier it was to push the pain thoughts back because there was more to take my mind off of it.

Anyway...I hope this is of some help to you. If you have any questions (I know I tend to ramble...sorry again) please feel free to ask.

Nicole

LOVE your screen name!! Now you can crack me up here too..Love ya!