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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Not good news
Jun 13, 2008
Hi everyone,
Saw my doc this past Tuesday -- He went over all the treatments and offered me the sympathetic nerve block and I declined. I talked to him about disability too cuz I've been strugglin at my 3 hour job cuz of all the walking (RSD is in my left foot) -- Since I'm a state employee, we don't get state disability, but we do have 100 days of 1/2 pay -- However, SSD requires being off work for a year so most folks are put on state disability for a year to meet that requirement -- I can't do that, so.....not really sure at this point what I'll do. Today was our last day of work until August -- Yesterday was the last day for the kids (I'm at elementary school, but moving to Middle School next year). I know that most RSDrs don't work, but is there anyone out there working part time like me??? I LOVE this job, and it's good for me to work (I work very well with children) and we need the money so I cannot imagine just upping and quitting for a year and then trying to get SSD -- I know it's a gamble and that's what scares me. My doc says they usually will say "if your legs are bad, then get a sitting job" -- I also have neuropathy in both legs and that's also a painful condition. Anyways, I need to talk with people who have had the sympathetic nerve blocks -- I'm not trusting of ANY doctors except for my RSD doc because the guy that did my foot surgery screwed up and I need more surgery cut can't have it cuz of this darn RSD.
He also offered me narco, narko, norko -- Don't know how to spell it, but I know it's a bit stronger than Vicodin cuz that's what I'm taking now -- I'm doubling up on my Vicodin instead of having to buy the Narco (sp?????) Anyways, -- Anyone on that Narko drug? Do you like it, does it help, does it make you light headed?
And, who has been helped by the sympathetic blocks? I know some are helped, many are not. Also, he explained to me that IF it helps, then we will just continue doing that -- He said that in his research, the patient went 3 months before needing another one but I've read on this site that sometimes it only gives relief like for a day, etc -- Not worth having the procedure. Also, I'm a bit nervous because it's invasive and I surely don't want RSD in my back and that thought scares me to death. Can anyone help with this? I know RSD is the weirdest syndrome in the world cuz no 2 people have the same pain level, the same problems, etc etc. I burn a bit in both feet, but I have zero sensitivity and I'm 9 months with RSD. Someone on this site had said they didn't get sensitivity until 4 years so I know we're all very different except that we all hurt an awful lot.
He also had mentioned the ketamine in-patient thing is an option for some. Oh my gosh, I almost died in shock but my doc is a good RSD specialist that was just telling me all the options out there possible for down the road, if necessary. I didn't ask him if the hospital he's affiliated with does that procedure but wow oh wow -- Being in an induced coma for 5 days???? YEEKS! I thought I read or heard somewhere that the young gal had done it but it only lasted a year -- Her RSD came back -- Is that correct?
Michelle, I know you've written back with some wonderful, kind info and I'm pretty sure you've had RSD for a very long time. I can't remember -- Can you walk on your own? Are you mostly in bed all day? I'm so sorry, I honestly cannot remember. Thought maybe you could help answer all these questions.
I also need a cortisone shot in my right thumb because I've got an unrelated ligament problem and I don't even want to have that because I'm soooo afraid that RSD will go there too because of the needle. Isn't that right?
I know there's tons of questions here, but I would so much appreciated it if someone could answer some if not all of my questions.
Guess that's it for now -- It's a Friday night and my husband and I are gonna watch a DVD so must go for now -- You all take good care, and we'll write soon.
Thanks again for writing.
Rose :angel:





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