I had a very minor accident nearly six years ago that has changed my life.
I am 39, I used to love sports, dancing and meeting people, but all that has changed since I developed Reflex Sympathy Dystrophy. It is now called Complex Regional Pain Syndrome, but most people call it RSD.
It is a multisymptom , multisystem syndrome that usually affects one or more extremities and can even affect the whole body. It is a progressive disease of the autonomic nervous system. It can involve nerves, skin, muscles and blood vessels, as well as bones. In my case it has affected my spine , left leg, left foot, right foot, right leg, right hand, right arm and very slightly the left hand. My left hand is being controlled at present with Guanethidine blocks from my pain consultant.
In this article, I am calling him Dr X as he does not wish to have his name published because he is already inundated with patients.
The one thing people with RSD/CRPS have in common is pain. It is the most chronic pain disease. According to the McGill pain index, arthritis has a pain rating of 18, a fracture 119, cancer 26, chronic back pain 27while, incredibly, RSD?CRPS has a rating of 42. It is extreme to say the least.
Anyone can get RSD/CRPS. It can affect women, Men and children. For reasons no-one understands, the sympathetic nervous system begins to function abnormally. It often causes hypersensitivity, so bad that a light breeze, light touch of clothing and even a loud noise can cause an extreme amount of pain. The diagnosis is very difficult. Usually there is abnormal function of the sympathetic nervous system -- swelling, movement disorder and changes in tissue growth.
with RSD?CRPS suffers from the disabilities I do -- quite often the
patient appears normal. ( To Top next
To help people and doctors recognize
and understand the disease, I have started my own Web site --- www.rsdhelp.co.uk.
I have received e-mails from people saying their doctors have not been
able to diagnose the disease and that children have been put into psychiatric
care and told their suffering is all in their head.
I was also told to see a psychiatrist before I became disabled and
he could find no illness. It was not a pleasant experience and I am sure
it is a lot worse for children. I was lucky enough to meet Doctor X who
has been very understanding and caring, and done everything he can to help
with the pain. I know from the stories I have heard that most people are
not so lucky.
I was also told to see a psychiatrist before I became disabled and he could find no illness. It was not a pleasant experience and I am sure it is a lot worse for children. I was lucky enough to meet Doctor X who has been very understanding and caring, and done everything he can to help with the pain. I know from the stories I have heard that most people are not so lucky.
At the beginning I was passed from doctor to doctor ,and when no-one believes you are in pain, it is extremely frustrating. To thank Dr X , nurses, friends and others who have helped me--- as well as to help fellow sufferers----I took to writing poetry, most of which has been published. My goal is to write a book of my own.
My most recent poem is about associated professor in hand surgery Bo Povlsen and his wife, who have also been very kind caring and understanding. The RSD/CRPS caused my fingers and thumb to contract very badly and professor Povlsen has fixed wires inside them to straighten them out, so at leased I can wash the hand and my nails do not dig in anymore.
Unfortunately it is my right hand but I have learnt to write with my left. Contractions are often part of RSD/CPS in the later stages of the disease. My disability looks unpleasant and a lot of people stare at me. I have also noticed that when you are in a wheelchair , people talk above you to anyone else who is with you as though cannot speak for yourself.
I am far from alone in feeling this way. It is thanks to the wonderfull people I have met and the consultants who have helped me that I can continue to help others. every day I and other RSD/CRPS patients have to fight the system. There is an 18 month waiting list to get a grant for a suitable vehicle, for instance, but others have to fight just to get the disease that they have believed.