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

Hi everyone, how are you? I hope everyone is as ok as they can be. I've not been on the forum for months as I've been having a hard time coming to terms with being stuck in a wheelchair. For anyone who doesn't remember me; I've had RSD since 1996, I have it in all of my left side and my right leg, leaving me only the use of my right arm.

I went to the podiatrist's last week & I now have to have 3 toe nails removed due to my RSD, as my feet & legs have 'curled' so have some of the nails. I'm dreading having this done as I'm so worried that it'll upset my symptoms & give me yet another flare up. I've had just over a year of constant flares & it's just starting to calm again now. Has anyone else had this done? Did it cause problems for you too? I know I have no choice about getting it done because of the problems they're causing with additional pain, infections, etc, but it still bothers me, so if I could have some advice I'd be grateful.

Hi cinders! I have not had this issue with my toenails, but I just wanted to say that I am sorry for what you are facing. I have had RSD since 1991 and have developed it in both feet last year. It is getting harder and harder to walk so I fear that the wheelchair is coming sooner than I thought it might. I can't use canes or a walker because I have RSD in both hands, shoulders and left arm.

It sounds to me that it is something that you need to have done, you just have to be comfortable with your decision and the doctor performing the procedure. If it will relieve some of your pain (after you heal), then I would have it done sooner than later...but that's just me.

Good luck to you!
Nanc
:hug:

I had this issue with the toe nails on my left foot (where my RSD started). I had to have the nail removed because it was causing more damage and infection the way that it was. I was worried about it but the bottom line was that the damage it was causing was far worse trauma than having the nail removed. It was a relatively painless process (at least compared to the RSD) and while I needed to be careful with it for a while until the nail grew back in I didn't have any complications from the procedure.

Hi Cinders, so sorry to hear of your foot-toenail issues. Sounds like you are saying a 'no choice' issue. I've read on this forum and other info on rsd that loading up on vitamin c is a 'preventive' measure. For myself, I would do that right away before and after procedure. Also, could you talk to your doc about giving you something pre-surgery to relax your body and mind. Like I do the 'laughing gas' before any dental procedure. My dentist also gives me antibiotics prior to any dental procedure. Maybe you are already on antibiotics with nail infection issues. Hope the best for you. Let us know how you are doing and when you are scheduled. will be thinking of you- loretta I've had rsd like yourself since 96-both legs, arms, full body

Hi, thanks, do you know what level the vitamin c needs to be? I'm on 500mg a day at the moment, consultant is hoping it will prevent a little of the spread in my right side. The podiatrist is just waiting for confirmation to proceed & she's going to do it..... ugg:eek: Yes I frequently on antibiotics, both due to the toes & I keep getting leg ulcers. In March I moving into a purpose built bungalow, I got accepted onto a scheme they're running, so I'd like it over & done with by then so I can enjoy the new place :)

Did it take time to heal? Sorry I should've said thanks for the reply 1st, but I'm dreading it being done! They say they're going to kill the nail bed with a chemical once it's removed :confused:

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.

Help
 

In his paper on page nine he says the movement disorder is treatable ...how?

Ty
Deb

Debbie

Have you possibly posted this on the wrong thread? I assume you are asking about the document that Daylilyfan kindly posted the link to? If you are, then the only reference made to treatment of CRPS related movement disorders made directly in that document is in section 6.3 which only mentions treatment with baclofen and tizanidine.

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 :hug:

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 :hug:

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:eek:

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:cool: :hug:

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