www.rsdalert.co.uk
Warning and encouraging
If you have a story to tell, send it in for publication...
For correspondence help or general information click...
personal stories and notes from our correspondents
Carole - Orlando, Florida
My name is Carole. I fell on Oct 9th and broke both bones going into the hand. The break could not have been worse so the doctor said. The orthopaedic tried to set the broken bones in his office ( after my primary care doctor had called to tell him I needed to be in the hospital ) After he put me through hell and agony, he sent me home with orders to go check in the hospital the next day. It never got any better with that doctor so I finally switched to another. The pain after the break just got worse and worse, the fingers felt like they were burning from the inside out. They were on fire and swollen. I just sat around for seven weeks crying in pain. The new doctor sent me to a wonderful Hand therapist in Healthsouth. I was on steroids for a while and went through six months of therapy. The therapist said that therapy for RSD patients should not follow the "NO PAIN, NO GAIN" philosophy. I could not move any of my fingers in the beginning (it took months of work) but with the help of a good doctor and therapist I am now back to work after seven months. I am still in some pain but am trying to work through it. I had carpel tunnel surgery in March 2001 to help the numbness in the fingers( the RSD pain did flare up again after the surgery) but it did relieve the electric shock feeling I had going through my hand, and the numbness has gone away. That surgery was a success. I am hoping for a complete recovery eventually. I have been told by my doctor that the RSD could flare up again if I injured myself. But for now I will just continue to work at the home therapy. I feel lucky I found such a good doctor and therapist and Derrick with his encouraging story.
Lucy - Oxford, England
I was 19, and studying English at Oxford when I contracted
RSD. Like all sufferers, I was certainly not looking for this, and had
been enjoying an active life. I was lucky to receive a relatively early
diagnosis, but was not treated entirely appropriately. Although an epidural
stopped the paralysis, the pain continued. I have been through various
stages, for periods I have been almost entirely unable to walk, at the
moment although not able to work full-time, I can do most of my own
housework and am tutoring part-time. For the first time since diagnosis,
I am occasionally able to walk 300 yards. I've been interested to read
about the treatments which have worked for some individuals, and those
which few seem to have had success with. It is particularly interesting
that a number of people have benefited from physiotherapy. Intensive
physio, while obviously producing great results for some, has only ever
exacerbated my symptoms and pain levels, so for those people who haven't
found it works for them, you're not the only ones! Like most, I have
had numerous problems with the medical profession, including incorrect
psychiatric diagnoses. Doctors have often been puzzled and frustrated
by my failure to improve with physiotherapy, and I have to say that
for me my greatest and most long-term improvement has come since I stopped
seeing doctors at all. I've been kind to the RSD, not pushed it, and
just done as much exercise as my body can take. Over time, my condition
really has got a lot better. I still see my GP very occasionally, and
take prescribed medications, but steer clear wherever possible. For
those of you who, like me, get worse with vigorous exercise, it might
be worth trying my approach.
I couldn't agree with you more, Lucy. RSD is
an individual experience - we each need to find what works for us. Derrick