This new section of our website will
be dedicated to personal stories written by RSD patients and their families. So
if you have a personal story that you would like to share with everyone to read,
please e-mail your personal story
to Utopia33@prodigy.net and I will
post it for you.
Thanks!
Eric
TOS and RSD
Story by:
Darlene Brownell
TOS and RSD what does that mean? I will tell you what it
means. It’s the worse pain that you could ever feel every minute of the day. It
causing my pain to spread any where it wants to be. I can’t move my arms; they
feel like there on fire. The doctors would look at me like I was a liar. My
shoulders feel like some one was stabbing me all day and night. I can’t take it
any more. God just bring me to the light. The pain is so sever, there is no end
in site. Doctor it’s not in my head. Its all threw my body. And now it’s too
late, you didn't catch it early. If you would have listened to me when I said I
was in pain. I could have had a change in life, to do the things I planned.
Because of you I live in pain, not knowing what the next day will bring. If you
caught it right a way, I would have been ok. I'm not giving up on this battle of
pain I will fight to my dieing day for all of us in pain. The most pain of all
is seeing my children growing up as I sit on the side line watching from a far,
remembering the days I use to be involved. You took that a way from me, Shame on
you all. I really hate to say this but I wish you feel this pain. Because if you
did everything would change. You would act a little faster when someone show’s
up in your office complaining of sever pain. Instead of dismissing them like you
did to all of us. TOS and RSD suffers come out of your homes, lets all stick
together and fight for are rights, we need treatment other then meds. We
need doctors who know what this is. So we can stop the pain we live with each
and every day. Lets fight Comp, Doctors, and Judges that all disagree; that the
pain we feel is not real it’s only make believe. I.M.E.
Doctors need to retire, and get new jobs that require liars. SSD and SSI will
fight you too, because we are part of the system just like you. Look out all you
people we had enough of the TOS and RSD shuffle.
If you like you to contact Darlene the
author of this story you can e-mail her at:
darlenebrownell@yahoo.com
A Mother / Son RSD Story
Hello!
My name is Cheryl, and my RSD started January 30, 2008. It took months
for an actual diagnosis - months of doctor's visits, tests, and anxiety.
Once my neurologist diagnosed me, he offered me a variety of medications. I
politely refused and chose to fight my battle with acupuncture and physical
therapy. Both helped, but I found myself feeling very alone. So little is
known about RSD that even my physical therapist (who had the most experience
in the clinic) admitted he knew very little. He gave me a few simple
exercises, suggested I look a few things up on the Internet, and said that
was all he could do. I made progress, actually started walking fairly
normal again, but could not seem to conquer the pain and be able to do
simple things like take a walk with my family. I refused to give up but
sometimes felt frustrated that I wasn't making progress faster.
In early December, I was stunned to learn that my son had RSD as well.
He injured his toe which triggered the RSD. I kicked myself for not
recognizing the signs, but once his doctor diagnosed him I could look back
and see that it made sense. One of my first questions for my neurologist
when I was diagnosed was, "Is this genetic?" He assured me it was not.
Now, however, I have to wonder. Watching my son fight his pain was far
worse than experiencing it myself. I would have gone through it all over
again if I could have spared him the pain.
Fortunately, we live twenty minutes from a fabulous children's hospital
that has a rehabilitation program for RSD (although they call it RND). My
son was admitted in January and spent three weeks living at the hospital.
His rehab was intense to say the least. I was told before he started that
the reason there is no program for adults is because adults could never
handle what the kids go through. I am incredibly thankful that my son is
now fine. Within a month of coming home from the hospital his pain was
gone. He still does ninety minutes of therapy a day and even made it
through another toe injury with no relapse.
I believe that things happen for a reason. I feel my RSD enabled me to
empathize with my son in a way no one else could which hopefully helped him
during his toughest days. I also believe that his RSD happened to help me
finally heal the way I needed to. Watching him do his rehab taught me what
I should have been doing all along. I wish someone would have told me that
I needed to push through the pain and use my foot in spite of the pain.
Exercising and doing simple desensitization exercises made a huge
difference! I would never have know any of this if it weren't for my son's
experience. Now I just want to share it with everyone in hopes that I can
make someone else's battle with RSD easier. Taking that step, running those
stairs, scratching that foot seems too painful to imagine, but the end
result is so worth it. Now I can walk with my family and do everything I
used to do. There is hope!
Hello! I am a 32 year old mother of
five beautiful children 10 and under. I was young when I married and was so
excited to have children. That is all I wanted. Each pregnancy was very hard
and I was mostly in bed. I ended up with a herniated pelvic wall and
cystoceal. The doctors told me that surgery was my answer. I needed to have a
bladder lift and sling to be placed. It is a safe and easy operation for most
everyone but me. I came out of surgery screaming in pain. I thought the pain
was a level 20 out of 10! My leg wouldn't move and the
doctor was long gone. He said I probably had sciatica so they pumped me full
of steroids and morphine. Six hours later they called in the
same doctor to fix his mistake. He accidentally stitched right through my
sciatic nerve leaving me with drop foot, neuropathy and
RSD. I am in constant pain everyday and every night. I pray for God to heal
me so I can take care of my children and play with them like I
always used to. I was the little fun mommy that jumped on the trampoline and
skipped and chased around my kids. I was put on many
different drugs including methadone. That really made me sick. I had a pain
stimulator implanted. Nothing cut the pain but I was a
zombie. I couldn't remember anything. I was nauseous and lost too much
weight. The injury was 8 months ago and I am now walking again, but every step
is dreadful pain. I push myself, I want to fight this and get better. I
stopped taking a lot of the drugs. The Methadone was really nasty to get off
of. The doctors said I would feel yucky for 7-10 days. Wow, that was an
understatement! I am now at one month and I still feel sick. I had cold
sweats, heart palpitations, and diarrhea. It was so horrible. I suggest that
you do not get on Methadone. I have just one more drug to get off
of which is gabapentin. I realize it is not helping
and only makes me feel sluggish. Sleeping is near impossible with the RSD. It burns on fire and not constant, but pulsates
to make it even more unbearable. It is maddening. I still have drop foot and
it makes my therapy even harder. I just hope and pray that I can get better
some day.
Thank you for reading my story!
Erin
