hi everyone, my name is Lacey and I just joined this group and I
wish to tell you a little about myself and my journey with the fight
of RSD. It began about 4 years ago when I was about 15 yrs old. I
had sprained my ankle and months later the pain in my ankle grew
worse and never disappeared. I was in a Cam-Boot (walking cast) for
a year and a half b/c my doctor at the time kept insisting it was
just a sprain. Then the pain began to spread up my leg and to my
right leg as well...at this point I was very scared. I could no
longer rotate my ankle and was forced to wear shorts constantly
because pants were out of the question...and as soon as I stepped
outside, I found myself praying that there would be no wind because
the wind sent knives throughout my body. If I was in a car, I felt
every bump in the road...I knew SOMETHING was going on, but no one
would give me an answer. I then went to Children's Hospital where I
was diagnosed with RSD. I would soon be paying weekly visits to a
pain doctor and a biofeedback therapist. I was put on Neurontin (I
soongot up to 3600mg a day...)...then I started PT at Childrens and
it was HORRIBLE. The PT would lock me in a dark room and start
rubbing my legs with towels really hard. I spent the entire hour
screaming and crying and the rest of the day in bed. After this, my
RSD began to spread rapidly to the point where it had become
systametic, or full-body. I couldn't take showers, brush my teeth
as well, brush my hair...I ended up in a wheelchair. I transfered
to a doctor at a nearby major hospital who wasn't that optimistic
telling me I had no future and I would have to deal with this
forever. He tried me on Vikodin, Oxycontin, MS Contin, Morphine,
Methadone, Lidoderm patches and more. When I left his care I was
taking about 10-12 pills 4x day. Things still got worse. A couple
months later I ended up being put in ICU for a week for seizures b/c
of a medicine interaction, but after this something had happened and
my baseline of pain went from a 10 to a 2-3...sometimes I could even
FORGET the pain was there. I thought this was great and I loved it
because I had FORGOTTEN what it was to be pain-free...but it didn't
last too long. 5months later (March '05) I sprained my wrist and
ended up in the ER because the pain was soo out of control. My RSD
had returned and within 2 weeks had spread to my entire left arm. 2
weeks later to my entire left leg and back. Then my lower right leg
and my upper facial area/zone. Right now the bottoms of my feet
have become soo sensitive that I must walk on the sides of my feet.
I am hoping and praying that I can find SOMETHING to help me because
the fire that consumed my body before has returned...and this time,
it's 10x worse...