Return
I knew it would happen. The moment I hit the ground I recalled
the fears that had been with me since my last fall. But that was
a drama involving a helicopter rescue. This was just a trip over
a hole in the road. Walking along a quiet country lane in Devon
on a pleasant summer afternoon, the situation could hardly be less
threatening. There was no traffic, the road was dry, the pace was
moderate and I was walking with good friends - including a doctor
and a physiotherapist. I landed at the feet of the physiotherapist,
who moved quickly to stem the flow of blood from the obvious gash
in my forehead. But the thing that most worried me was the bloodless
injury to my left arm. That was the arm I broke when I fell on Dartmoor
eleven years earlier. That was the arm that had suffered the pain
of CRPS. The return of that chronic pain condition was what I feared all those years.
Misunderstandings
Let me introduce myself. I founded the Atroing>RSD ALERT website in 1999 and ran it for 13 years.
I have no medical training or qualifications, but I became something
of an expert patient through what I learned from the many visitors
to the former RSD ALERT website. We received all kinds of stories as people
shared their personal experiences of treatments, medical misunderstandings,
medications that worked for them - and other drugs they wish they had never
taken. But one of the more common questions from recovering RSD/CRPS
patients is, "Will the pain return?" I have often replied,
speaking theoretically, that there is a risk that the condition might recur
after fresh trauma, like another break or surgery. I no longer needed
to be theoretical about my replies. I broke my arm in five places
and had two surgical procedures - and the pain returned.
Fighting
I started feeling the distinctive burning pain of CRPS as I was lying
in bed with the cast balanced on my chest. There is no mistaking
that kind of pain. It's not like the feelings you get from the break
itself. CRPS pain is distinctive for its nastiness. Someone compared
it with the plunging your hand into a tub of boiling water and keeping
it there. To me, as the pain returned, it felt like having a boiling
hot tourniquet wrapped round my arm and steadily tightened. It was
horrible! I can't think how many times I have told people "If
this condition strikes me again it will find me fighting back!".
Now it was time to stand by my words.
Exercising
The pain of this condition defies normal logic; for no obvious physical reason, the
brain sends out inappropriate signals creating pain and a range
of other symptoms, often including temporary paralysis (the "dystrophy"
bit in the name "Reflex Sympathetic Dystrophy" means "paralysis").
Paralysis is ignored in the new medical name for the condition (Chronic
Regional Pain Syndrome or CRPS) but, in my case, it was a key factor.
Over many years I found that, if I stopped exercising my hand it
would start to stiffen up and I would get twinges that were uncomfortable, even though not quite
pain. These new bouts of burning pain spurred me to start exercising
the fingers even before the cast came off. After discussion
with my surgeon, I even had the plaster removed early so I could
exercise more of the hand and wrist (very carefully!)
Resist
I have good news - the pain didn't last. The first time I had
CRPS I didn't know what it was. This time I knew what to expect and
how to respond. I remembered what my physiotherapist told me years
ago, "The more flexibility you achieve, the less pain you will
feel" and I determined to follow the same strategy. I began
lightly exercising my hand before the cast came off and set about
a more suitable exercise regime as soon as the bones were properly
fused. My injury was worse than last time, but the fight against
RSD showed much quicker success. The pain returned; but it found
me ready to resist. I knew a lot about CRPS and how to respond,
but I was ready to learn new tricks and my new treatment programme
included "Mirror Therapy". This remarkable treatment proved
especially helpful in the early days when my wrist was too painful
to put it under strong pressure. Mirror therapy enabled me to do
some real exercise, but only within the limitations that the pain
allowed.
Good News
My new injury was worse than the one I had eleven years previously.
The arm was broken in five places and it needed a metal plate and
five screws to hold it in place. To add to my problems a nerve became
trapped and I had no feeling in some of my fingers after the operation.
To release the trapped nerve I had to have a second hand operation,
which set the healing processes back several months. Years later,
I still need to exercise my hand to maintain strength and flexibility.
But this is a Good News Story. Yes, the pain of Complex Regional Pain Syndrome can return and it did
in my case - but not for long. Having battled this condition before,
and achieved remission, I had experience on my side. I knew what
was happening and I knew how to deal with it.
I am now less fearful of CRPS - but I'll try not to fall over again!