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personal stories and notes from our correspondents
Karen - Edgware, Middlesex, UK
"I have had RSD for eight years now
and it was brought about by a fracture of the scaphoid in my left hand.
Unfortunately I didn't get a diagnosis for the next two and a half years,
so by then I was stuck with it. I've had all the usual analgesics and
antibiotics; I've done calcatonin injections, had physio and seen loads
of doctors. I have been accused of making it up and self harming. I
had three sets of guanethidine nerve blocks and a surgical sympathectomy
(which only made things worse as I now have lymphoedema of the left
arm as well). I was then put on the fentanyl trial (which did seem to
help a bit) plus oral morphine for breakthrough pain. Then in June 1997
I had an scs fitted which, when it works properly, cuts pain by at least
half. I still take the morphine and use the patches but the pain never
goes away completely. Last year the RSD started to spread along my upper
back and by Christmas was affecting my right arm. Luckily I now have
a pain doctor who knows that treatment should be started within six
months and I am having intensive physio and OT now and am waiting to
be booked into day surgery for a nerve block on the right side. I have
also suffered with urinary retention for the last three years and have
just been told that this is because of RSD's effect on the sympathetic
nervous system. I am now unable to work but hope that sometime I can
at least go back part time to my nursing job, which I really miss."
WOW, what a catalogue of problems. Well done
for keeping at it and being so hopeful. Derrick
Alan - London, England
I have had RSD for six months and every day is
a new challenge. My RSD was bought on after I slipped over at work
with a bottle in my hand, and I have not worked since. I cannot use
my right hand at all and being right handed find this quite unbearable.
The pain that I feel cannot be described and my wife suffers with
me. I take 11 different tablets including morphine and other quite
frightening tablets. I see my consultant twice a week and have spent
nearly TEN weeks in hospital. It feels like a living nightmare. But,
despite every word I have said, I believe I can beat this disease
and return to a near normal life.
Great attitude, Alan, I believe in you too.
Derrick.
Rachel - Modesto, California
"Hello, My name is Rachel
(49). Once upon a time I was a back office nurse going to school for
further education hoping to become a Registered Nurse. On my days off
I would take my 15 year old daughter to the movies, malls, and was planning
a trip to New York - just the two of us. One day a slip, and fall changed
my life completely, as well as my daughter's life. The first 14 months
were a nightmare knowing something was wrong, both feet burning, yet
Doctor after Doctor could not tell me what it was. I wondered if I was
going crazy but, really, I knew something was wrong. I would buy better
shoes, a new set of mattresses, yet the burning continued - pain that
never went away except those rare occasions when exhaustion overcame
me and I slept for 2-3 hours. Finally a pain Doctor gave me a name to
what I had (CRPS type one RSD.) 'What the heck is that?' I wondered.
Despite years of nursing I had never heard of it. It was god to have
a diagnosis at last but, after 14 months delay, my options were limited.
I was given 5 nerve blocks, the first being the best - the last only
gave me about 6 hours relief. So now that one nightmare has ended, another
begins with SSA. I wanted to teach my daughter that even after a painful
divorce I could be strong, and move forward, but I cannot continue my
education. The days of being a nurse are gone, however I can still be
strong, and show her that of all the challenges I've faced in my life,
this is the biggest yet. I may never beat RSD but it won't beat me either.
When the pain gets more then I can bear I sit down and write my pain
on paper. That way I release some pain as well as anger, so none of
the negativity reaches my daughter. No matter what you have to deal
with, whatever comes your way, you need a positive attitude. I'd like
to say to all the people who have to suffer RSD 'Life is not always
fair but how you handle it is what counts'. I intend to become stronger,
and fight harder for this disease to help other people gain back the
power that RSD tries to take."
Thanks, Rachel. I hope lots
of people take encouragement from your fighting spirit. Derrick