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personal stories and notes from our correspondents
Tina - London, England
I have suffered RSD for 11 years since 1993. It was not diagnosed until
1997. I had a operation on my back 1993 but they never told me, apart
from you might never be able to walk again, but any other contra indications
they don't tell you about and what you could happen after the operation,
like RSD they never told me about it.
I could never tell the whole of my story because it is horrific. I went
from its in my mind, and i was taken to theatre, given medication IV,
It did not work, then was told it was only water and thought it could
be mentally although my leg and foot was 5 times bigger than the other.
I then through every procedure you could think of. I'm know in the fourth
stage of RSD, and it is surprising the 4 hospitals that I attend, never
knew about RSD, But they have now started to research. But what's me
really makes me mad, they just fob with more medication. Morphine, Gababentin
(17 tablets in the morning and 21 in the evening) that's without the
day times doses, plus injections daily. I also suffer with DVTS and
Multiple PEs, and a few more other things. I'm going back to college
next month, and it takes my mind off of things. I hope somebody in north
London would be able to talk or meet up, I'm in a wheelchair, so the
Angel Station would be great.
Lindsay - North Carolina, USA
In 2001 I came to RSD Alert looking for others like me, I was 19
and had just been diagnosed with RSD. In the years since I have taken
Topamax, Neurontin and Amnnitriptaline. I used a Lidoderm patch, and
Tramadol for the pain, I also have a electro stimulator from a company
called RS Medical out of Vancouver, Washington US, I had two temporary
nerve blocks and went through over a year of physical therapy to regain
my ability to walk. While I am not pain free today my life is very
close to being back to normal. I still use the stimulator and take
tramadol but I can function and do daily things. These years have
been an amazing journey for me, one that I learned a lot from and
gained a lot of strength because of. I would like to be able to listen
or share my experiences with anyone. I currently live
in North Carolina, USA but went through most of my treatments in Pennsylvania
USA.
Orlando- New York
I had RSD in my right hand which is now in remission. I recently had
my left shoulder operated on. I was given a nerve block so that my shoulder
would be numb for several hours after surgery. Unfortunately the surgery
flared up the RSD which I now have in my left hand. The doctor suggested
a sympathetic block. I am very wary about having this done because the
other nerve block did not work. I was also given elavil and nurontin,
I am thinking of canceling my appointment for the nerve block which
is to be on April 22, 2005. I am hoping that the pills will help so
that I will not need the block. I feel that the nerve block during surgery
caused the flare up and not the surgery. I would like to know if that
is possible. The doctor told me today to enjoy these years . It sounded
as if he were saying that things are going to get worse. I am determined
to fight this and will not allow RSD to rule my life. If anyone has
had sympathetic nerve blocks that have lasted a few months I would like
to hear from you. Thank you to all who shared their stories. orlandony@
Thanks for that message. I have some experience
of my own that might help. First of all, I would argue that the surgery
caused The RSD to flare up, not the sympathetic blocks. Note however
that I am not a doctor, just a sympathetic sufferer with some experience.
I had a small operation on my knee which without doubt caused The RSD
to flare up. At the same time, I had nerve blocks over several months
and while these gave brief respite, they did not cause the pain to worsen.
I too have been told to accept The RSD as there is no cure at present.
Clinical psychologists can be of some help here alongwith not accepting
that pain means an end to life. It may only mean that some adjustments
are required! Steve Costello, Storyboard Ed