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personal stories and notes from our correspondents
Heather - South West England
Compared with some I am very lucky. I work with emotionally
and behaviourally disturbed children in a residential school (10-17
years old) and last June (on my husband's birthday) a large 16 year
old threw a chair at me. Instinctively, I put my hand up to defend myself
and got a broken right scaphoid for my trouble. The hospital put me
in and out of plaster and eventually, after two weeks, said it wasn't
broken - but I was still in such agony that they told me to see my own
doctor. My doctor then complained (that's the polite version!) as the
hospital had not referred me to a specialist. End result - I did have
a broken scaphoid and spent a total of nine weeks in plaster. After
that a physiotherapist spotted the symptoms of RSD - swelling, increased
hair and nail growth on my right hand - and she started appropriate
physio immediately. The pain was still there and it still spread; but
at least I have good movement, though not the strength I used to have
in my hand and arm. In January 2002 I was eventually referred to a pain
specialist who prescribed Neurontin and, for the first time since the
injury, I slept properly. On good days I am virtually pain free.
Apart from medical appointments I have had no time off work with this
even when I was in plaster. I still work in the same place and am now
having to take action to get compensation. However, the constant 'fight'
for proper compensation puts extra strain on me to add to the pain.
The condition is now spreading up my arm, to my neck and my left arm
and hand and could eventually stop me working. The disorder itself,
is awful. Like others I sometimes feel that because people can't see
it they don't believe the pain is real. The frustration of not being
able to do things I did before - driving any real distance, even taking
tops of jars - is very upsetting. I was always a fiercely independent
sort of person and now I have to rely on others, who do it willingly,
but I feel they shouldn't have to.
Will someone will find a cure one day?
We all hope so!
Linda - Antigo, Wisconsin, USA
"In 1987 I smashed my right forearm at work and it felt as though someone had set me on fire. I knew right away something was wrong. They took me to the doctor and set my arm, I asked about the burning in my arm, shoulder, neck, face and back and the doctor said it was normal. The pain never went away so, after about 3 months I went to a pain clinic. They treated me until they said there was no more they could do. Worker Comp sent me to their doctors who also treated me for RSD until they also said they couldn't help me. Then they said it was all in my head!
In 1995 I fractured my right leg and the same thing happened. So now I have RSD in my whole right side and I am still fighting Workers Comp.
What I can't understand is, if all of this is in my head why do the doctors treat me with narcotics and all kinds of arthritis medicine for pain?"
You have a good point, Linda, and I don't believe the pain is in your head. Your experience confirms that, if someone gets RSD after one injury, it will attack again after another. Derrick
Greta - New York, USA
Let me tell you how I got RSD. In December 1997 was helping a friend move and fell over on some steps, landing on my right ankle. I didn't go to a doctor until two weeks later because I thought it was just a sprained ankle. When I did go, the doctor took some x-rays and confirmed that I had sprained my ankle and torn a ligament. I had to wear a soft cast for two weeks and, after they took it off I started to experience severe pain, stiffness, discoloration, swelling, and constant burning pain. In August 1998, when it obviously wasn't getting better, I went to an orthopaedic doctor. He took more x-rays, saw my symptoms and diagnosed RSD - 8 months too late! If the first doctor had sent me to a specialist I could have been helped, but he didn't.
Now I have to take dilaudid, compazine, mexitil and celexa. My pain management doctor and my orthopaedic specialist want to put a cast on my foot (which has been inverted since the accident) and to insert a catheter in my back to administer medications.