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personal stories and notes from our correspondents
Virginia - USA
Hi, my name's Virginia
I have been living with RSD since 2000.
Who would have thought that one fall could take away your normal life.
I went to work one day, got out of my van and fell on the ice hard.
I could not get up until someone helped me. The pain was bad then but
now it doesn't figure on the pain scale of one to ten. I've gone through
blocks in the neck, meds that make me sick and doctors who give up ('we
have nothing else to offer you - go see a shrink!'). I tell them it's
my arm not my head that has the problem. My idea now of a good day is
when the pain is so bad I get so lost and tired that I just collapse.
A bad day is when I don't get in collapsing mode and feel that I can't
give in to the pain. Believe me, it gets harder and harder. I find comfort
in my puggy and my hubby and kids, who seem to understand why mommy
cannot play. I find myself dealing with the pain by being left alone,
not letting anyone touch or poke my arm. Left handed typing hurts too.
Angie - Norfolk UK
I have had RSD for nearly two years now, but was only finally diagnosed 3 months ago, it all started after I slipped while shopping. I broke three bones in my ankle, and had to have pins inserted. The pain never went away, though I had a year of intense physio and rehab 3 times a week at the hospital - but nothing seemed to work. Then my consultant thought it might be the pins that were causing the pain so I had them removed… Still, it was agony! I was then referred to a pain clinic, which was hell, made me feel worse and made me feel like I was going mad!
I haven't had any support at all. I am doing less and less walking
now have the burning in my hips and knees too half the time. I don't
know what to do with my self. The doctors now want me to have a nerve
block, but my friend was left paralysed from this, I have also heard
so many terrible things about them. I wish doctors over here understood,
I feel I'm fighting a loosing battle. But you've got to think positive
and try and keep strong.
William Ogilvie - UK
I was signed up in UK army and had gotten bad blisters caused by ill-fitting
boots, this led me to an army nurse, who injected both my heels with
a solution similar to iodine. The procedure was that the heels would
then be drained and left to heal, but in my case the nurse left the
solution in my heels too long, though I thought it was normal. After
several days an army medic noticed me walking funny and took a look
at my feet. I was rushed to the army hospital and stayed there for 3
weeks treatment, which consisted of having my heels scraped clean with
scalpels etc and bathed in acids. During this time I stared getting
burning pains and my feet began veering from cold to hot; they were
very sweaty and the pain was getting serious. I was discharged from
the army and 8 years on I'm still getting this pain and the hot and
cold symptoms.
Last year (2002) I was admitted to hospital with a kidney stone, which
had become stuck in my tubes. A thin piece of tubing was placed into
the kidney and bladder; this caused more serious pain and I was bed
ridden for a few weeks. Once the tube was taking out the pain never
left and I'm sitting here wondering if the RSD has found a new area
to latch onto, as I think it has progressed to my hands as well. But
the doctors don't seem to think this is the case as, according to them,
"the condition can't do this". Well I read that the RSD can
do this and often does...
If anyone out there can shed some light on this please post in this
web site.
Sadly, we have to agree with you, William.
RSD can spread to areas far removed from the original injury. Happily,
it does not happen to the majority of patients, but your experience
is not unique. (Editor)