Hello,
I am Kathy ans I was told a year ago that I have RSD. I had foot surgery and
then they told me the reason I was in so much pain and the swelling would not go
down was because I had RSD. I do not know alot about it and can not find out
alot. My leg hurts all the time and my ankle swells alot. I have taken 2
different kinds of shots in the spin to try to help this but it did not help. I
just stopped going because I was sick of wasting money that I did not have on
something that was not giving me any help.I also have some problems with 2 disc.
in my lower back and I can not get any help with them. Noone will really tell me
why, I have seen three different drs. for that also and one of them gave me some
morphine and that is really all that they have done. Any ideas what I can do
now? It takes me three times as long to do things now because my leg or back or
both will start hurting me so bad. I live in NC near Charlotte and would really
like some help if anyone knows where to go to get the help. I have seen some
pictures of RSD limbs and thank God mine is not like that yet and I do not want
to wait to late.

-----Original Message-----
From: diane hotaling <rsdpain05@...>
To: rsdsupport1@yahoogroups.com
Sent: Thu, 12 Jan 2006 19:56:10 -0800 (PST)
Subject: Re: [RSDSupport1] Digest Number 410


Hi Niki, my name is Diane and Im 23 years old and have only been dealing with
this disease for 7 months but I have dealt with a lot of it and fast. My RSD is
crps1 and full blown. I have it all over and is at stages most doctors have not
seen because I had back surgery w/out knowing what rsd does and it sent it wild
and then was hospitalized and they didnt follow any of the instructions of care
w/ an RSD patient and spread it into the only spot left w/out it and so now I
have become so bad so quick that I dont think my mind has had the chance to
catch up to my body yet. I have a 2 year old whos my world who even tells people
easy quiet mommy sick and gots boo boos and kisses me constantly because he sees
me in such agony daily. I know your hurting right now im in a wheel chair most
of the time too and its like another piece of you was taken away, another piece
of your freedom of life, movement and plain happiness gone. Well people will
stare but who cares, and it may take a while to
get used to but you will and your a stronger person every battle you face. Also
dont forget that RSD has its remissions and also make sure you go to a top notch
pain facility for RSD atleast once because they are aware of all the newest
things available and the best case studies and treatments that many other
doctors who may be wonderful but dont have the funding to know of and do. Also a
clinic carries a team of people specialized in different areas in one place in
complete connection w/ eachother and all working on the same person at the same
time, you. This was the best thing I could have possibly done. I wont deny this
disease is horrible and daily I wonder whats next, minute to minute I wait at
times for it to flare if I have been having to nice of a day or two. But dont
let it bring you down to much just remember it may control some of your body at
times but it does not have your soul and heart only you do at thats what makes
laughter, joy, memories and love not your physical
welll being. I once took care of a girl w/ severe cerebal palsay and she may
have gotten upset over a few things like a child would (her mind stayed at a 5
yr olds) but other than that she talked even if it didnt sound right and she
laughed as happily as any child would only she was 22. People used to say how
sad it was that she was in a wheelchair and will never be able to live a normal
life. I thought in a way she was lucky because she didnt know the sadness the
world held, she never knew whether a person was cruel and laughing at her or
nice and laughing with her and although she had her moments she was genuinely
happy and sweet as could be and that was one thing that the condition couldnt
take away from her and yet kept her from seeing thats not the way others viewed
her or it. My best advice is take and give a lot of love and support. Always
keep hope and never settle, remeber that there are many doctors out there and
new info coming out daily so take care and advantage of
those things. Dont concentrate on what you have or may loose but what you have
and may gain. Remember miracles happen, cures are made, and dreams do come true.
Once again Im sorry to hear of all your bad news and I hope you could get some
more advice or answers from other sources and see if there are other options out
there and in the meantime concentrate on the things you do have because emotions
do effect your RSD and you dont want to help the disease you want to fight it,
so relax and stay positive and if not anything just hopeful.Best wishes and best
of luck!!!!!

rsdsupport1@yahoogroups.com wrote: There is 1 message in this issue.

Topics in this digest:

1. Hello My name is Niki - bad news for me today.....
From: niki0313


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Message: 1
Date: Mon, 09 Jan 2006 18:48:19 -0000
From: niki0313
Subject: Hello My name is Niki - bad news for me today.....

Hello! Niki Here!!

I have had RSD for 6 years now.

Today... I got some really bad news... having a REAL hard time
dealing with the news... I had three knee surgeries on my left knee
before I got RSD... on Jan. 1 I injured my left knee again... went to
the ER... they imobilized it and today I finally got into my "Knee
Dr."

He said IF I didn't have RSD he would do surgery on it FOR SURE!
But, since I do have RSD.... He is going to TRY to find me a knee
brace... other than the imobilizer I have right now. Would have to
wear it for AT LEAST 6 WEEKS.... I'm on crutches right now... can't
really get around very well...

When he said IF I didn't have RSD to do surgery.... he also said
Surgery would more than likly put me in a wheel chair.

I have RSD in my right arm, both legs, bladder... etc... well, pretty
much full body...

I'm just NOT taking todays news very well.... wondering how it will
go for me... scared, depressed, and worried.

Any thoughts? let me know...






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