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> Hello my name is Beckie and I have had rsd for 3 years now.

> I also have equinovarus deformity and dystonia secondary to rsd.

>

Hi Beckie,

Welcome to our family. What treatments did you receive for your rsd?

Tell us a little about yourself. It must have been hard growing up

with a clubbed foot.

I have had RSD for 6 years this 9/7

It was caused by a car accident and crushing all the metatarsal heads

on my right foot. I am now full body.

Take care and again welcome.

Hugs and a pain free minute,

Deb (Deborah Genatossio)

Founder of RSD-CRPSofAmerica

Debgena@...

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Thanks for the warm welcome.I am looking foward

to getting to know everyone here.

This seems to be a close knit group.

Beckie

> > Hello my name is Beckie and I have had rsd for 3 years now.

> > I also have equinovarus deformity and dystonia secondary to rsd.

>

>

>

>

>

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Big welcome to you, Becky. I hope that you're able to find support here. BarbaraBeckie wrote:

Thanks for the warm welcome.I am looking fowardto getting to know everyone here.This seems to be a close knit group.Beckie> > Hello my name is Beckie and I have had rsd for 3 years now.> > I also have equinovarus deformity and dystonia secondary to rsd.>

> > > >

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  • 4 weeks later...

---

> Hello everyone,

> Thank you fo rthe warm welcome.Sorry I didn't get back here to post

> sooner,but as Dori said I have been very sick.

> However I am starting to feel some better now.

Hi Beckie,

I am so glad you are feeling better! What exactly went on?

Just don't try to do too much too fast, so you can continue feeling

better

Take Care,

Deb

Debgena@...

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Hello ALL,

I had a really bad case of Bronchial Pneumonia.I had a fever that

refused to come down.It got up to 104. at one pont.

I was having a very difficult time breathing.

Orignally when I went to see my doctor he wanted to admit me,but as

usual I was being stubborn and hard headed and wouldn't do it because

I had a hardhip hearing before the state board of work comp a few

days later.That's where I goofed.If it had not been for Dori and Janet

I may not have made it.They convinced me to go back to the er.

I am still in a pretty bad flare from where they packed me in ice to

get my fever down.I tried to explain to all of them that it was

burning and they all looked at me like I was stupid!I am sure you all

know that look {how can ice burn?}

Anyway, my immune system has been affected by the rsd,and I have had

a really hard time getting over it.

I do feel some better,but I am not up to my old self yet.

Sorry it took so long to respond to the post.

Ya'll take care and I promise I will post some more soon.

Beckie

-- In RSD-CRPSofAmerica , " " <debgena@a...> wrote:

> ---

> > Hello everyone,

> > Thank you fo rthe warm welcome.Sorry I didn't get back here to

post

> > sooner,but as Dori said I have been very sick.

> > However I am starting to feel some better now.

>

>

> Hi Beckie,

> I am so glad you are feeling better! What exactly went on?

> Just don't try to do too much too fast, so you can continue

feeling

> better

>

>

> Take Care,

> Deb

> Debgena@a...

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YUK. Sorry , Beckie...Hope you're up and around soon. BarbaraBeckie wrote:

Hello ALL,I had a really bad case of Bronchial Pneumonia.I had a fever that refused to come down.It got up to 104. at one pont.I was having a very difficult time breathing.Orignally when I went to see my doctor he wanted to admit me,but as usual I was being stubborn and hard headed and wouldn't do it because I had a hardhip hearing before the state board of work comp a few days later.That's where I goofed.If it had not been for Dori and JanetI may not have made it.They convinced me to go back to the er.I am still in a pretty bad flare from where they packed me in ice to get my fever down.I tried to explain to all of them that it was burning and they all looked at me like I was stupid!I am sure you all know that look {how can ice burn?}Anyway, my immune system has been affected by the rsd,and I have had a really hard

time getting over it.I do feel some better,but I am not up to my old self yet.Sorry it took so long to respond to the post.Ya'll take care and I promise I will post some more soon.Beckie-- In RSD-CRPSofAmerica , " " <debgena@a...> wrote:> --- > > Hello everyone,> > Thank you fo rthe warm welcome.Sorry I didn't get back here to post > > sooner,but as Dori said I have been very sick.> > However I am starting to feel some better now.> > > Hi Beckie,> I am so glad you are feeling better! What exactly went on?> Just don't try to do too much too fast, so you can continue feeling > better> > > Take Care,> Deb> Debgena@a...

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Beckie,

I sympathize with you after watching so many people down so hard in Chile. At least two were diagnosed with bronchial pneumonia when they got home. I think there were others that just didn't go to the doctor. They were utterly miserable, no question about it! I was the first one to get sick and had a sore throat, followed with cough. Bet it was that VERY gross throat spray that I had Tom buy as soon as I felt it coming on that kept it from getting so bad. (LOL) Made Chloraseptic Spray taste like cherry candy, comparitively! (they didn't have it) We had to drink a lot of hot lemon juice too (orders of our missionary wife).

Love,

Re: Beckie

Hello ALL,I had a really bad case of Bronchial Pneumonia.I had a fever that refused to come down.It got up to 104. at one pont.I was having a very difficult time breathing.Orignally when I went to see my doctor he wanted to admit me,but as usual I was being stubborn and hard headed and wouldn't do it because I had a hardhip hearing before the state board of work comp a few days later.That's where I goofed.If it had not been for Dori and JanetI may not have made it.They convinced me to go back to the er.I am still in a pretty bad flare from where they packed me in ice to get my fever down.I tried to explain to all of them that it was burning and they all looked at me like I was stupid!I am sure you all know that look {how can ice burn?}Anyway, my immune system has been affected by the rsd,and I have had a really hard time getting over it.I do feel some better,but I am not up to my old self yet.Sorry it took so long to respond to the post.Ya'll take care and I promise I will post some more soon.Beckie-- In RSD-CRPSofAmerica , " " <debgena@a...> wrote:> --- > > Hello everyone,> > Thank you fo rthe warm welcome.Sorry I didn't get back here to post > > sooner,but as Dori said I have been very sick.> > However I am starting to feel some better now.> > > Hi Beckie,> I am so glad you are feeling better! What exactly went on?> Just don't try to do too much too fast, so you can continue feeling > better> > > Take Care,> Deb> Debgena@a...

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Hi Beckie, You sure have had a rough time of it. It is terrible that we have to endure other things along with the RSD. I know that look of disbelief when they packed you in ice. I had to be packed in ice one time for a fever too and it really does burn. Too bad you had to go through all of this. I hope you feel better real soon. Look at it this was as far as the ice is concerned, the flare of RSD will get better with time, but without the ice you probably would not be here. Take care and have a good night. You are in my prayers Hugs, babs Re: Beckie Hello ALL,I had a really bad case of Bronchial Pneumonia.I had a fever that refused to come down.It got up to 104. at one pont.I was having a very difficult time breathing.Orignally when I went to see my doctor he wanted to admit me,but as usual I was being stubborn and hard headed and wouldn't do it because I had a hardhip hearing before the state board of work comp a few days later.That's where I goofed.If it had not been for Dori and JanetI may not have made it.They convinced me to go back to the er.I am still in a pretty bad flare from where they packed me in ice to get my fever down.I tried to explain to all of them that it was burning and they all looked at me like I was stupid!I am sure you all know that look {how can ice burn?}Anyway, my immune system has been affected by the rsd,and I have had a really hard time getting over it.I do feel some better,but I am not up to my old self yet.Sorry it took so long to respond to the post.Ya'll take care and I promise I will post some more soon.Beckie-- In RSD-CRPSofAmerica , " " <debgena@a...> wrote:> --- > > Hello everyone,> > Thank you fo rthe warm welcome.Sorry I didn't get back here to post > > sooner,but as Dori said I have been very sick.> > However I am starting to feel some better now.> > > Hi Beckie,> I am so glad you are feeling better! What exactly went on?> Just don't try to do too much too fast, so you can continue feeling > better> > > Take Care,> Deb> Debgena@a...

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Thank you babs,

I am really having trouble getting the burning under control since the ice incident.

I have a lot of fluid built up around my ankle.I t is swollen as big as a soft ball.I wonder if them using ice on it could be part of the reason?

I am feeling a little better every day as far as the bronchial pneumonia goes. I am still pretty weak. I have been taking vitamins to help boost my immune system. I hope they kick in soon!

I know what you are saying abou the the ice but man did it ever set me on fire.

Take care and hope to talk ot you soon.

Beckie

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Hi Beckie, Well the ice could be the reason for the swelling in your feet. But I get that all the time and you are right it is way uncomfortable. I get mine from the RSD. Everyone that has RSD does not even swell and if they do they all don't swell at the same places. EVen different parts of my body react differently. I swell in my hands and feet really fast but the calves of my legs don't swell at all and they have RSD big time. Take care and have a good night. I will keep you in my prayers. Hugs, babs Re: Re: Beckie Thank you babs, I am really having trouble getting the burning under control since the ice incident. I have a lot of fluid built up around my ankle.I t is swollen as big as a soft ball.I wonder if them using ice on it could be part of the reason? I am feeling a little better every day as far as the bronchial pneumonia goes. I am still pretty weak. I have been taking vitamins to help boost my immune system. I hope they kick in soon! I know what you are saying abou the the ice but man did it ever set me on fire. Take care and hope to talk ot you soon. Beckie

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This letter should have been really to instead of Beckie, as she was replying to Beckie's letter. Oops!

Love,

Beckie

Beckie, The movement disorder I am talking about was mentioned in a puzzle of Dr. Hooshmund. Do you know of him? He mentioned that anyone who has RSD who thinks it is in remission and has any kind of movement problem is only fooling themselves. RSD is not in remission, or cured ifthere are any residual movement problems still present. Because Stefanie's symptoms have changes for the bettersome doctors think she has beaten this or is on her way to beating this. I feel differently, I think the factthat she is not running and cannot with out severe pain, is a giant big red flag, that physical therapy will not help. I am so sorry to hear they tried sand paper on your footOUCH! What an idiot..... These physical therapists try hard but oh my GOD! I put Stefanie's foot in a foot massager to stop the discoloration. It was the only thing I myself couldthink of to keep the circulation moving. Everytime her footturned blue and cold I put it in the massager. Don't know ifthis is something you can do with the sores you have and it was painful at first because of her hypersensitivity. But shesoon tolerated it on low and I put ebsom salt in the hot water.Now she does not use the massager and her foot is normal colorand our Physical therapist tried to have her step in sand and itwas way to hard so we stopped that. She said it was like walkingon broken glass. She still has burning pain and pain every day.but we are going to see if the nerve block will help as our windowof opportunity with this will close very soon. We caught this rather early but with the doctors I had they did not believe in any nerve blocks. This new doctor perscribed a lotion. Compoundedjust for my daughter with baclafen and other ingredients in it.We have only used it for a week. No miracles yet. But I like thisdoctor for once I have a doctor who listens to me. Take care and god bless.Always,

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