Hi Marylyn,
I have RSD also for two years. I find cold in general
even airconditioning is dreadful and painful.So no
matter where you live, you need to adapt.
I use heat packs like the hunters use to put in their
socks or mittens to keep warm. I also use a "corn
sack" which is like a heating pad filled with corn
that you microwave and it conforms to the body part.
I have it in my hand and it spread to my arm, neck,
shoulder and back in 2 years, but with constant
physical therapy (3-4 times per week)- heat baths,
parafin dips, tanning booths, you name it- It all
helps control the pain.
Ive been told this hideous disease can go into
remission, and I beleive if you and your daughter
beleive she can get well she will. Ive also read a
great book by Joel Olsteen called your best life now,
which helped me tremendously in mental outlook on
things.
I know its hard to endure, hard to tell a child to
hang in there or get use to it- they told me the same
and Im no child but beleive me, it effected me to the
point of suicide numerous times.
Now I dont want this disease to be the victor in our
lives, so please try to ease her pain w/ the heat
pack, tanning beds, and parafin-try more physical
therapy, and try to regain mental health. You'll see
with prayre also, that is the best medicine of all.
Ill pray for all of you that suffer. My thoughts are
with you all daily.
GodsBlessings of Love and Light,
Jolene Ann Seebacher

--- marylynnduke <dukejobo@...> wrote:

>
>
> I just wanted to say hello to anyone living with
> this hell on a
> daily basis. My dtr. was diagnosed at 10 yo. We
> don't know how she
> got it. One day she started with pain in her right
> foot. Each
> winter it gets worse. She now has it in all 4
> extremities. She has
> gone thru aggressive PT programs for kids that
> promise she will get
> better. She only regains mobility but the pain
> continues. I have a
> hard time finding doctors to treat this medically
> since she is
> young. They act like she can walk so she has to
> just learn to live
> with the pain and someday maybe it will go away.
> I'm sorry but I
> wish this dreadful disease on them or a loved one of
> theirs.. How
> can you tell anyone, especially a child to just deal
> with it!! She
> often wants to die and who can blame her. I know of
> one 14 yo who
> went to Germany and had the Ketamine coma for 5
> days. She had it
> all over and now just has flare ups in her arm which
> improve with
> Ketamine boosters.
>
> I'm trying to take her to a pain clinic at
> Children's in Boston.
> One of the doctors their worked in our area with the
> Dr. Schwartman
> who beleives in the Ketamine treatment. He won't
> see my dtr. since
> she is a peds pt. I will be open to hear about
> everything. Here
> are some questions I have.
>
> Since it worsens evey winter do I need to move
> somewhere warm? Do
> you know anyone who lives in a warm climate that
> gets worse certain
> times of the year?
>
>
>
>
>
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