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personal stories and notes from our correspondents
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Beth - Michigan, USA
My name is Beth and at the age of 35 I had my whole life planned out.
I was a pediatric nurse of fifteen years and had a great paying job
that I loved. I had a great husband and three kids. One evening while
taking my daughter to a school event I was rear ended at a high rate
of speed. I felt fine at the scene of the accident other than a headache
and some neck pain which was to be expected. By the next morning I had
unbearable burning nerve pain in my neck and back. After several trips
to the ER and seeing multiple doctors I thought I was going crazy. In
fact people started saying I was just trying to get attention. Eight
months after the accident while shopping with my daughter the pain in
ten minutes time went screaming down my arms. They were on fire. It
was as if I were holding onto a live electrical wire. I went home took
some pain meds and went to bed hoping I would wakeup to find it gone.
Instead I woke up only a few hours later to find it was now in my entire
body. My whole body covered with purple and white blotches(mottling)
and my hands and feet were ice cold and clammy as if they were dead.
The pain was beyond description. My husband drove me to the neurologist
who sent me directly to the pain clinic. The doctor I saw there performed
a ganglion nerve block which instantly relieved the pain. This was my
diagnosis of RSD. Being a nurse I knew it ment it was forever. I spent
the next four years nearly bedridden. I was completely unable to care
for my family let alone myself. I flew from Michigan to Florida every
eight to twelve week to see a doctor who specialized in the treatment
of RSD. Over a three year period I received thousands of nerve blocks
amongst all of the other so called treatment for RSD. I had finally
had enough. None of the treatments were helping. Through our insurance
company and lots of prayer I was introduced to a rehab program for patients
with chronic pain. I knew in my heart this was my last chance and I
was going to do everything in my power to make it work. With the help
of the awesome team at the rehab center I have finally regained my life.
In six months time they took me from a bedridden, depressed, shell of
a human being to a energetic life loving mother,wife and woman. They
got me off all of those drugs that had been holding me captive for so
long. They taught me to stretch those muscles so I could walk and turn
my head again. They got me on the treadmill and got my body producing
its endorphines again. (your body's natural pain killers and feel good
drugs) They taught me biofeedback to help me relax my body and mind.(it
really does work). Most of all they stood by me and encouraged me every
step of the way. They gave me back my hope and my desire to want life
back. It was the hardest thing I have ever done in my life. Much harder
than laying in bed in pain for four years. It has been eleven months
since I started the program. I ride my bike twenty miles in eighty minutes
five days a week. I have lost forty pounds and I can see the future
again. I live each day as if it were my last. I want to experience new
things all of the time. I'm like a kid in a candy store I just can't
get enough of life. Yes I still have pain all the time. I have gotten
it down to a 5-6 which is very do able for me. When you have lived for
so long with your pain at a ten a 5-6 is heaven. I no longer let pain
control my life. I control my life and I just happen to have RSD. I
am writing a book about my experience (My Journey back to Freedom) as
well as starting to do some motavational speaking. I hope to return
to work soon and yes I will be working with chronic pain suffers. I
have a burning desire to reach as many people as possible and let them
know you can have LIFE and RSD at the same time.
Jim Lorenz - Germany
I've had RSD/CRPS for several years now. For the first year or so I
was devastated. Eventually, though, I realized there would be no help
from the medical side. The only way to go would be to accept it, work
on it, stop feeling sorry for myself, and get away from being so self-indulgent.
So I did: progressive relaxation, meditation, lots of sleep, weight
reduction, good nutrition, no smoking, ..., and an attitude I think
I'd like to describe as "F... you, Pain!" It eventually reduced
my suffering by maybe 50%. But then my wife and daughter happened to
start working out at a health club. They said they thought I should
come along. I was skeptical but decided to give it a try. Wow! The exertion
appears to have straightened out some major kinks in my nervous system.
My (perceived!) pain level now is maybe 10% of what it once was. Any
halfway decent distraction can make me forget all about pain for a while.
I therefore warmly recommend working up a good sweat and getting your
muscles nice and tired. It helped me a lot - maybe it'll help you, too?
Tanya - USA
I was diagnosed with a brachial plexus injury, after
a work injury with a 400 pound patient, doctors were sending me
everywhere to try to find out what was really going on, why my hand
kept swelling an turning colors. They then sent me to a doctor for
a ganglion block, which only made things worse. They sent me all
over seeing a total of 13 different doctors, Finally one said she
has RSD in her arm, they than ran some tests and said the brachial
plexus has caused RSD/CRPS. I have been on a non-stop battle with
this for three years now. They put me thru therapy where I felt
things going down hill. I later started having problems thru my
whole right side into my left leg and all. Went back to see the
doctor and he said it had spread thru the body. I was told the treatment
may have ended up too late. I know it has changed my life completely.
I am on a battle with my weight because the pain has caused me to
lose so much that now I am anorexic. My doctors don't seem to know
what to do or how to calm the pain down. I have been going thru
a lot of steroid injections to the spinal cord, which works for
short time. We seem to have a hard time putting my pain under control.
Everything gives me trouble - cold , hot, or just trying to do things
in the house. Even foods bother it. I have not been able to return
to work in three years since my injury. I know what they mean when
they say this can cause serious depression. I seem to live depressed
because of the pain and just not being able to do the things I use
to do.
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