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personal stories and notes from our correspondents
Kirsty - Hampshire, UK
My name is Kirsty. I am 30 years old and have been suffering with RSD
and Neuropathy in my right leg. It all started in May 97 when I injured
my right foot and damaged a nerve. I had numerous operations, nerve
graphs, nueromas removed. Then it spread into my leg and I've been on
drugs (prescription) ever since. I've had the nerve blocks and local
anaesthetic through a drip; next I'm having the sympathetic nerve block,
and then next will be the epidural to see if I am eligible for the pump
in my back.
Trying to describe the pain in my leg is so difficult. The problem is
its not just one pain. It causes so many different types - stabbing,
burning, aching, nerve pain as if tin foil is touching a filling - and
the intensity is severe. It doesn't stop with my leg; the knock-on effect
it has had with my good leg (because I put all my weight on that one)
has upset my hip, back and foot. I haven't worked since July 2001. Most
of the time I potter around trying to be positive; getting depressed
isn't going to help me but, every few months when the pain cripples
me, I do get down in the dumps. It's hard when no one understands and
doesn't want to understand just what you're going through. It's not
like you're asking for sympathy; its just that you need understanding
and people taking an interest in you.
I got to the point of wanting my leg amputated. I can't even wear a
pair of shoes, so hobbling around in flip-flops and shorts (if trousers
touch my leg I get P A I N). When the snow was here you can imagine
the looks I was getting for going around in shorts. I'm sure people
thought I was not all there.
My advice to anyone suffering and living on their own is to get a cat
- that's my therapy; I have four and they love me unconditionally, whether
its a good day or a bad day. I don't feel so alone with my cats. If
anyone wants to contact me that's suffering with RSD then please get
in touch. It seems that there aren't that many of us about; and anyone
who has had the pump… what's it like? Does it help? The one thing
thought that gets me through this is that there is always someone worse
off than me - and I use my good days to do as much as I can.
(to respond to Kirsty send a message to mail@rsdalert.co.uk
with the subject heading "Message for Kirsty of Hampshire")
Frances
My daughter was just a few days from turning 13 years old and she just changed to public school. She was so very excited when she could not get out of bed in the morning because of the pain. This was October 14, 2001. She saw many doctors and they concluded that it was a pulled hamstring muscle. I was not satisfied with this since the area was so sensitive that it could not be touched at all. She has had pain meds and tests and seen many specialists with no help. We saw a pediatric neurologist who thought it may have been a tethered spinal cord, but was not sure. He left the decision to have/or not have surgerry up to us. She had the surgery on March 22, 2002 and a tethered cord was found and released. But the pain has not subsided. That doctor has sent us to another neurologist and finally the diagnosis has been made. We are waiting to hear what treatment options he will suggest for our daughter. She has only gone 3 days to the new school and that was last year, she has not attended this year. The teachers and guidence counselors did not believe her and gave her a hard time of it. She has been socially isolated, but I thank God she has a great attitude. She does not suffer from depression, and she never complains. She laughs all the time which makes my husband and myself so happy. I hope we will find help for her, she is too young to be going through this. Some of your stories helped her feel that she is not alone in this situation.
George - New Jersey
I got RSD when I was working for a hvac company and I fell through
a rotten roof. I was sending down a pipe down the chimney that gets
the carbon monoxide out of your house. The roof collapsed and my left
foot hit a wooden beam and snaped back. I went to the first hospital
and they told me I had a crushed foot, gave me cruthes and told me to
see the workmans comp doctor. He said "there is nothing wrong with
you go back to work on light duty." The next night my foot was
blown up twice the size as it should be, so I went to the hospital and
they told me it was a bad sprain. Back at work my foot was throbbing
that whole day and even into that next night. I stayed off work for
two weeks, then I got a third opinion at the Thomas Jefferson hospital
in Philly. They took x-rays and told me that they will have to operate
on my left foot because I had a quarter size divot missing in my talis
bone (it concects your ankle to your leg). The operation was on July
3 2002, then the surgeon sent me to a foot and ankle specalist. He ran
tests and measured how far I could bend my foot. Then he noticed discoloration
in my foot and the different temperature profiles. He said my left foot
was colder than my right and then dropped the news that I have RSD in
my left foot. He sent me to rehabs & gave me every prescription
under the sun. He also put me in a walking boot. I had a hard time with
accepting that i will never be the same. Then workmans comp must have
sent me to at least 12 or 13 doctors to try and say that I do not have
RSD. When that didn't work they told me I was at medical improvement.
When I asked what that meant they told me that I cannot improve any
more and that they are cutting off my workmans comp. Then, when I tried
to get it reinstated from the courts the judge agreed with them and
I lost my case. I went on temp-disabilty until it ran out after 9 months,
asfter which I had to apply for welfare. I hated doing that because
I love to work, but I can't tell when the RSD will act up, so who would
hire me? Three months later the doctor told me that, from the fall &
RSD I got 3 blood clots at the same time, one in each leg & one
in the lung. I have fallen, blacked out and,some days I can't get out
of bed. Right now I am on no meds and don't go to doctors because I
can't afford them. My RSD is starting to spread to my left hand and
arm.
I hate the sleepless nights, hot and cold spells and the burning pain
(like someone has got a blow torch on my left leg). The skin on my foot
is spotted, red & tight, with black thick nails.
I have joined a RSD Group and that helps talking to others who go through
the same thing that you do.