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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)

Hi, not been on for months, I need some help.

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Unread 02-01-2013, 09:04 PM   #11
cinders999
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Originally Posted by loretta View Post
Cinders, Vitamine C=I personally would take 1000mg. For RSD I've read 500=1500mg. So personally I would take the high dose before and following procedure. Hope the best for you and keep us posted how you are doing please. loretta I've had the ulcers and they are soooo painful and not fun. take care
As soon as I hear back from them I'll let you know. It's nice to know there is somewhere to ask things & people to answer I probably should've posted before now when I was having soooo many problems coming to terms with being confined to the chair, then maybe it wouldn't have taken so long to adjust, thanks for the advice
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Unread 02-01-2013, 09:16 PM   #12
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I think it was a week or so where I had to have it wrapped and couldn't wear a normal shoe. After that a simple bandage and regular shoe for a little while. It took months for the nail to grow back but after about 2 weeks (I think) it wasn't sensitive to the touch anymore.

I don't remember anything about chemicals to kill the nail bed...they gave me a shot to freeze the toe before removal...that was the worst part of the whole procedure for me. They did put some sort of goo on my toe after removal...I thought it was just liquid bandage or something like that but I guess it could have been something that killed the nail bed...I didn't ask and wasn't told about it beforehand.
Thanks, knowing someone else has had the treatment makes it 'not so threatening' so to speak. Once they take the nail off they're going to put the chemical on to stop the nails ever growing back (95% proof)! I'll increase my vit C as soon as I know the date of op, maybe for a week or so before hand & maybe a few weeks after??

I don't mind the shoe bit as I haven't been able to wear shoes for about 10 months & with the way my legs, from the knees down, have 'curled' I couldn't get a pair on. I've been given braces that I have to wear 3 times a day for 3 hours on & 3 off, it's to try to correct them with out them becoming dependent on them for shape ........! I don't know if it'll work as I've only been using them for about 2 months & the OT did say it could take 6 months or more to know if they'll work.

Thanks for the support
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Unread 02-01-2013, 10:51 PM   #13
loretta
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Cinders, No one knows how they would respond to going to a wheelchair, till it happens to them. The good thing now is that you are NOW reaching out for support and giving it to others. We will all be thinking of you having this procedure done and hope the best for you.
So sorry about your feet and legs. Please keep us posted how you are doing so we can keep in touch. loretta
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Unread 02-11-2013, 09:09 AM   #14
cinders999
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Cinders, No one knows how they would respond to going to a wheelchair, till it happens to them. The good thing now is that you are NOW reaching out for support and giving it to others. We will all be thinking of you having this procedure done and hope the best for you.
So sorry about your feet and legs. Please keep us posted how you are doing so we can keep in touch. loretta
Hi, I've just heard back from the podiatry clinic, they're going to send me an appointment out shortly, they still don't have the info from my consultant (they'll have fun getting that as I've been trying for an appointment/phone call for about 8 months now, the secretary just 'palms' you off!) and to see if she can find any information about nail removal on RSD patients. RSD is still so un-common here in the UK, mainly because doctors don't like to diagnose it, that she's never operated on anyone with RSD. So I'm now off searching the net for any useful links I can send her
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Unread 02-11-2013, 03:07 PM   #15
loretta
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Originally Posted by cinders999 View Post
Hi, I've just heard back from the podiatry clinic, they're going to send me an appointment out shortly, they still don't have the info from my consultant (they'll have fun getting that as I've been trying for an appointment/phone call for about 8 months now, the secretary just 'palms' you off!) and to see if she can find any information about nail removal on RSD patients. RSD is still so un-common here in the UK, mainly because doctors don't like to diagnose it, that she's never operated on anyone with RSD. So I'm now off searching the net for any useful links I can send her
Hi Cinders, On january 31,,2013 daylilyfan wrote a post about Dr. Scwartzman-well known crps doc in Philadelphia It's a lengthy paper he wrote:www.edsers.com/uploads/rsd.pdf On page 5 he talks about vitamin c and it's benefits prior to invasive procedures.
Let us know when you go in. thinking about you-loretta
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Unread 02-18-2013, 01:50 PM   #16
jrosiebd
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Originally Posted by loretta View Post
Cinders, Vitamine C=I personally would take 1000mg. For RSD I've read 500=1500mg. So personally I would take the high dose before and following procedure. Hope the best for you and keep us posted how you are doing please. loretta I've had the ulcers and they are soooo painful and not fun. take care
wow, thank u for posting this,i had to have 2 of my toe nails removed,no one told me it was from my rsd
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