Cathy,
         Very sorry to hear about your husband. I have had it 2 years from my
knees down, and in the last year inside my nose. Where does he have it? First,
they are more dr.'s that don't believe it is a real disease than those who do.
Most say it is in your head when in all actuality rsd is caused by the body
being in extreme chronic pain  (so obviously your husband had a problem to bring
this on?) for a long length of tome, the brain does not know what to do w this
overload of pain so it send it out in the form of rsd. It can be anywhere on the
body, even can go in your organs. Right now I am on my 3rd infection. They swell
to the point that the skin gets covered in blisters, they eventually split open
leak, get a scab, it falls off, they leak more, bleed and in my case turn onto
open ulcers, I then have tio have them wrapped in zink oxide gauze w another
layer of ace bandages over theat, the process takes 6-8 weeks, depending on how
bad they
are, I havr to go weekly, they peel off the gauze, which ends up ripping off
the scabs, take a pic, measure and redo, am also on antibiotics during this
active period. My legs are always a deep red while my feet are a gray/black
color, so for the rest of my life no one will ever see my leg again! Also know,
as in my case and many others, when it is a sudden violent onset, 85% of peple
lose their teeth, they can be eating toast and one will fall out while eating,
in the last 9 mths. I have lost all but 5, most of them have broken off at the
gumline, the few lft are all broke, so that is my next step, getting them
pulled. You can also suffer haur loss, rapid hair growth, feeling like u r
getting the flu all the time, eventually neuaropathy gets your feet, that is
when the nerve endings start to die, if u think the rsd is painful, just wait
for that!  Now me personally had 2 failed back surgeries, that led me to have a
morphine pump placed in my stomach,
w that and eatting pain pills all day I still live in a daily 10 pain scale,
and that is a good day! 3 mths. after I got the pump is when the rsd hit, that
was after living 4 years in that amount of pain. I am 58, was very active and am
now either w a walker or mostly in  a wheelchair, I had a stroke in Nov., am
going blind in one eye, have advanced Rh. Arhtritis and advanced scoliosis and a
ton more, so believe me I know what depression is. I am 98% housebound, am
basically ashamed to be seen. And there r other frugs that will ease the painb,
not make it go, but at least take the edge off, fentynal sucks, I am on delaudid
and biprivicane in my pump, but both r avail. oral and patch, I also rtake
10/325 Endocet 7 times a day and 5mg. Percocet 4 times, 10mg. of Valium and 5mg.
of Elevil bedtime, I go to bed at 3am and am up at 7, I sleep in a recliner at a
80% angle w my feet just raised slightly. There r times I swear if a feather
touchs my legs I
would scream!  I know I have not guven u much encouragement, and as a wife it
must be very difficult because I have a saint for a husb., we r married 26 yrs.,
and if it was another man he would have gone out for a beer 4 yrs. ago and neve
r come back! He works construction, comes hiome, on alternate days vacuums, does
the laundry, washs the fllors, cleans the bathroom, makes the bed every day,
does the dishes, dries them, puts everythnig away, feeds the dogs, walks the
dogs, does the food shopping and all errands, and never has a second for himself
and has not had sex for 5 years!!!!! I try to take care of him the best I can
but that is not important to him, so I guess I can really say that is love.
Worst is I take so much out on him, so be prepared, u have no clue no mstter
wether u think u understand or not, u can't, there will be days he chews your
head off for nothing, I go thru periods where I will cry for days, this is no
life believe me, if it
wasn't for the computer and for mt being a jewelry designer I would go insane,
and believe me w the economy, no one is buying jewelry!   The site u belong to
is not so hot, can I suggest u come over to 
    http://rsd/crpswordstolisten,wordstoshare.ning.com
If u cannot get on email me and I will send u an invitation, it is a small grp.,
6 people so far, but some have had it 15 years and some new, I think it is a
good place to be.I go by Annmarie there, so look for my home page, JBird is the
woman who started it or Jenette, so please have your husband check it out. There
is also Women_aganist_rsd.com, u might want to check that out. Also there r alot
of articles from the American Journal of Medicine and from Harverd Univ. that u
can look up, do some research and most of all do not listen to these dr.'s
because the people on these sites know more than they do.
U will both be in my prayers, and whenever u need to talk I am here to listen, u
can get me at atrag2@..., and please do not hesitate, your husband can
even email me  w any ?'s he might have or if he just wants to talk, if u don't
mind.
I know I just wrote a novel but I always feel very bad for a new person,
especially if they r young that has to live the rest of their lives like this.
Take care both of u, gentle hugs sent.
Annmarie   
  

Anna Daley
`Unique Jewelry for the woman who dares to be different'
http://www.Picturetrail.com/Beadfuldelights
http://www.Flickr.com/photos/atrag
http://rezbeader.Artfire.com           studio
http://www.EclecticJewelryDesignsbyAnnMarie.com     store currently being
stocked
 

--- On Tue, 2/17/09, cathyr707 <cathyr707@...> wrote:


From: cathyr707 <cathyr707@...>
Subject: [RSDSupport1] Re: RSD
To: rsdsupport1@yahoogroups.com
Date: Tuesday, February 17, 2009, 10:13 PM






Hi, my name is Cathy. I just joined. My husband has stage 4 RSDS. We
have been married 8 months. It is very hard.
May I ask. is there any medicine other than vicodin that helps with
the pain? The doctors here keep telling us it is jsut in his head.
That is such bull! He hurts 24 hrs a day. He can't even hold my hand.
I am desperate. I cannot afford to go to Germany or een send him.
Just looking for advice, anything. I am so sorry you are going
through this.

--- In rsdsupport1@ yahoogroups. com, "Winter" <winterwhitefox@ ...>
wrote:
>
> only thing that works right now is being put in the ketamin coma
for 2
> weeks or so either here at haneman or in germany...mexico does it,
but
> this doctor doesnt like the way they do it so he sends his patients
to
> germany and they get excellent care...thank God...the doctors name
is
> Robert Schwartzman. i waited over a year to get an appoitment with
> him, but it was worth it because he was the first doctor who said
he
> knew what it was and that he could help me......thank god
> Dr Schwartzman was the first doctor to take one look at me and know
i
> was in trouble. He ordered 3 tests that you have to have before the
> process starts...a screening with a heart doctor, a nuero/psych
> evaluation and and hot/cold test to see how much yur body can
stand .
> then if those are okay he does ketamin treatments for 2 weeks...or
he
> sends you to Germany for 2 weeks and puts you in a ketamin coma.
> The most important thing i learned was that the medicine(fentynl
path)
> does absolutely nothing for this excruciating pain. The docs give
it
> to you to shut you up and because they have no idea what to do.
> I'm so bless i was able to get into see this doctor and hopefully
soon
> will be living my life again. my hugz and daily prayers go out to
> whomever needs them. Shala
>
















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