CRPS defined
"Type 1 complex regional pain syndrome
(CRPS 1), formerly known as reflex sympathetic dystrophy (RSD), is a
clinical syndrome of variable course and unknown cause characterized by pain,
swelling, and vasomotor dysfunction of an extremity. This condition is often
the result of trauma or surgery."
"Causalgia is technically known as complex
regional pain syndrome type II (CRPS II). It's a neurological disorder
that can produce long-lasting, intense pain. CRPS II arises after an injury
or trauma to a peripheral nerve. Peripheral nerves run from your spine and
brain to your extremities" - Definitions: Mayo clinic
Various sources estimate that up to 90% of CRPS
sufferers possibly do not have direct nerve damage and thus falls into Type 1
CRPS category.
The struggle is real
I was never one to back down from a fight, but being at war with
yourself, especially with something like CRPS pushes you to a total new level.
You are tired all the time. Everything becomes a struggle - to get up in the
morning, to go to sleep at night, to stay asleep, to smile through the bad
days, to talk to people, to do activities, to push through the barriers...even
to breath - everything makes you tired, it involves lots of effort. Things that
you usually do without thinking about it like brushing your teeth or breathing,
walking etc...you suddenly become very aware of. At times it may feel like you
are standing in front of this huge mountain. While you are still struggling to
get the courage to place one foot in front of the other to start climbing, you
see your peers around you running up what seems to them to be a small hill. And
it often feels as if you have barely started your climb when they have already
finished the race without breaking a sweat.
But eventually you also learn not to compare yourself, and your new
"disabilities", too much with the abilities of others, even when it
is often hard not to. Getting to grips with not living in the past and not
being able to do what you used to do, is more difficult than one might realise.
With Chucky I had to go through all the stages of the grieving process. And to
a certain extend I am still experiencing some of the stages from time to time.
Although CRPS is not curable, it may be possible to go into remission
from time to time. What I have found with Chucky was that I had bad days
and extremely bad days. Especially in the first couple of months most of my
days would be extremely bad days, but once in a while I would have a
"good" day - which was actually just a bad day with less pain,
swelling and burning - you know like a bitter pill covered in sweet chocolate.
If you keep the pill in your mouth long enough, the chocolate melts away and
the bitter sting of the pill hits you like a hammer and lingers for the rest of
the day. And I always feared those days more than the extremely bad days,
because whenever I would have a "good" day, it would be followed by
2-3 extremely bad days. Normally with an extremely bad day you more or less
knew what to expect, but after a "good" day, there would usually be
some new "issue" as well. It was like opening a lucky packet every
day and getting a new surprise each time - a horrible vicious circle.
As said before the type of CRPS that I was diagnosed with does not react
to pain medication. In actual fact, as explained to me things like CBD and
morphine only aggravates it, making it worse. So why is Chucky acting the way
he is, when I do not have physical damage to the nerves? The answer lies in the
brain as the control centre of the body.
An Amazing Organ that can be so Cruel
The brain is an amazing thing, but it can also seem to be very cruel at times. Living with neck pain for so long probably contributed to me developing CRPS. Someone once told me that as bad as it seems, I can be thankful that I had the hand operation first instead of the neck operation, as the CRPS would most probably have targeted my neck - one of the reasons that we want to postpone a neck operation for as long as possible.So in layman's terms, how does CRPS affect me the way it does. Due to
the constant pain,
my brain has started to compensate on various levels. One way was in the way it
viewed my hand after the operation. Pain is an abstract construct. It is the
body's alarm system that sounds as soon as danger is near. So when I had the
operation, my hand sent messages all the way up my arm through my nervous
system, up my spine to my brain to warn that there is danger. However, because
my brain has changed its view of my hand, it also changed its response, as well
as how it interpreted the warning messages it received. So while my hand kept
sending these constant messages to the brain, the control centre, to say that
there is danger, the brain never sent back the messages to the hand to let it
know that the danger is gone and that my hand is actually healed. As a result,
this caused my brain to almost not acknowledge my hand by making my hand feel
as if it does not belong to my body any more. It also caused my hand to become
oversensitive to touch and caused this constant feeling of immense pain and
burning, excessive sweating, swelling, change in skin colour, loss of hair,
twitching, horrible reaction to cold temperatures etc. And although the brain
is involved, and although it might have seemed and felt like I was going crazy,
I had to learn and accept that this is actually not a psychological problem,
but a physiological one. Yes, it affects your psychology at the end of the day,
but it is because of this physical changes that is taking place inside the
brain. If only Chucky could also realise and understand this, but there was
(and still is) a long way to go towards total acceptance and gaining respect
for each other.
Therapy
I was introduced by the spine specialist to this amazing
Physiotherapist, Hesti. Hesti is a no-nonsense, straight shooter therapist that
fully invests in her patients. She wasn't afraid to give me straight answers to
the often difficult questions that I had on CRPS. When I started with the
physiotherapy, she sat me down, asked a lot of questions, did some tests and
then started to explain the type of therapy that we would be doing. As I
listened I thought, how on earth would this type of therapy help my hand to
heal and the pain to subside, but I was ready to try anything.
I remember Hesti asking me why I wanted my hand to be healed. I mean
really, isn't it obvious? But it made me think, apart from getting rid of or
minimising the pain, why did I want it to become better. And I realised that
one of my biggest motivations was to be able to build memories with my kids
again and to be the husband to my wife that she deserved. I didn't want to feel
helpless and hopeless. So in order to work towards getting better, I had to
deal with both my overactive emotions, as well as my oversensitive hand - two
things that at this stage were fuelling each other.
We started off with some physiotherapy and then went on to start with
Stage 1: Left/Right Discrimination. According to the Neuro Orthopaedic
Institute, "this is a process which requires complex brain activity. Results
have shown that this process reduces many chronic pain states like CRPS,
Phantom Limb pain, Osteoarthritis etc. This process trains your active parts of
your brain associated with movement to discriminate between your left and right
limb without firing off a pain response." (www.gradedmotorimagery.com)
Left/Right Discrimination consists of a number of cards of the specific limb
that you are struggling with. The idea is to be able to correctly distinguish
between the left hand and right hand pictures within a certain given time.
Looks and sound much easier than it actually is. I got about half of it right
on my first try and took much longer than the time allocated. It is strange and
frustrating at first. When you do this for the first time it feels like your
brain is physically spinning around in your head as it is scrambling to try and
make sense of what is happening. It is a strange, strange experience. The more
you focus on this however and the more you do it, the better it becomes. At
this point we were trying to work on the pain and burning, but also on the
distant, disassociated feeling of Chucky. And of course Chucky did not like
this at all.
My homework for the first week was to try and do some sketches and time
myself to see how long it would take for Chucky to start complaining. I barely
reached 20 seconds, if that much, before I could not stand the pain any more.
Next we had to try and unlock the drug cabinet in my brain to motivate my brain
to start creating its own natural opioids. This was partly to be done by
walking 2 km each day (trying to get some exercise) - not an easy task when you
do not have any energy to do so - very difficult to motivate yourself in such a
state. And then I had to do the left/right hand discrimination. At the end of
the first week Chucky felt enraged and I felt that I had no strength left. I
had to keep a log of everything, also my sleeping patterns. We had to find a
solution to my insomnia, caused by the pain, in order for my body to be able to
get the necessary rest so that I would be able to manage the pain much better.
I felt really discouraged. And I became angrier - angry at myself for not being
able to reach my goals, angry at Chucky for not working as a part of my body
and doing its own thing. And as time went by I started to resent Chucky.
I remember telling Hesti that I think it would be better to have Chucky
cut off. I was used to pushing through pain barriers, but this time it was just
too much. I could not handle this anymore. Hesti looked at me and asked,
"So let’s say we cut off your hand, and the pain is still there, what
then? All you would have done then is to create another problem as now it would
become a phantom limb, meaning that the limb is gone, but the pain is still
there." And then I started to understand what she meant by her explanation
right at the start that this is a physiological change in the brain in how it
views my hand...but I still wanted to get rid of Chucky.
People that know me probably thought that I've totally lost it as I
would have these constant verbal fights with Chucky. To me my right hand has
not only gotten its own personality, it has become its own personality in the
form of Chucky. I would say go left, Chucky went right; I would say pick up the
cup, Chucky would drop or throw the cup; I would try to fix something, Chucky
would attack my left hand by sticking the screwdriver in it; I would try to get
some sleep...Chucky would shout and scream as if he was having a rave or rock
'n roll festival and kept my whole body up. It was like dealing with a
rebellious child that would throw tantrums when he did not get his way, or when
he did not get any attention. When I ignored him, he would scream in pain and
flame up.
In October 2021 I wrote the following on one of the
support groups:
"Does anyone else have conversations with
their affected limb? My hand and I had a fallout yesterday so we are not on
speaking terms at the moment. Kind of a love/hate relationship. He's got a mind
of his own. Ignores me totally. I talk to him he growls by burning. I scold him
he shouts at me with pain. I'm afraid if I smack him he is going to hit me
back. He's crazy
Perhaps he feels punched in the gut because I am
trying to have some normality in spite of him, thus causing him to get less
attention. Sorry Chuck but suck it up buttercup!"
This was my new reality that I had to deal with every single day, and us
not being on speaking terms happened quite often. Chucky constantly felt far
away, as if not part of my body. When I touched my face, it felt like somebody
else's hand touching my cheek. Even when I looked at it, it did not look like
my hand. There was this constant distant feeling, apart from the pain and
burning. But even then, I felt the pain and burning and horrible sensation when
I touched stuff, but it did not feel like my hand. It is weird to
describe.
Now I don't know if you have ever tried to do that exercise where you
put out your right leg and start turning your foot in circles to the right.
Next you take your right hand and do circles in the same direction as your foot
and everything goes well. Finally, you start turning your hand in the opposite
direction while you try to keep your foot turning in the original direction,
and it is chaos. No matter how much you try, your foot automatically changes
direction as well to synchronise with your hand. It feels like your brain is
going crazy trying to comprehend what is going on.
The same happened when I did this Mirror therapy exercise, but more than
just this feeling of my brain spinning around, Chucky started to scream from
the top of his imaginary lungs. He started to curse in pain, spewing flames as
my brain could not reconcile what was happening. My brain knew that my hand was
in the box, not moving, but it saw my right hand in the mirror moving - it
could not understand how that was possible. I remember Hesti asking me which
hand was in pain, the one in the box, or the one in the mirror. I mean
really...Chucky, my affected hand. And again she asked me stating that it made
a big difference in whether it was the hand in the box or the hand in the
mirror. So I replied, the hand in the box. So she explained how my brain was
trying to process what was happening and as a means to do this the pain signals
were being fired up to try and find that "normality".
And I find this often. Thinking back on when I started going for therapy
and as tried new drugs (which I will be addressing in the next chapter) I often
found myself putting my hand in front of the car's aircon just to feel the
pain, to feel alive, in times when the pain was less or suppressed. Although
CRPS is a physiological issue, it has the ability to mess with your mind. and
that may be part of the reason why you feel drained and tired all the time. It
keeps you in this constant battle with yourself. It prevents you from getting
to the deep sleep that you need for the body to restore itself, and by doing so
it creates various other issues. It is not an easy path, and it does have
a much greater effect on your family than you think.
Is there a cure for CRPS? NO! Is it possible to go in remission?
Hopefully YES. As life and my faith told me, anything is possible. I want to
close off this chapter with a story that may give a bit of hope to somebody out
there.
Pushing the limits
In the midst of trying to manage my pain and getting my pain and emotions under
control, I decided to build a bed for my youngest son. Yes, some may say a very
brave thing to do, others might say a very stupid thing to do - for me it was a
matter of proving to myself that I am not helpless or hopeless and that Chucky
is not going to determine my life and what I can and cannot do. I ordered the
raw material, tried to do some sketches of what the bed had to look like (and
yes simple was not going to do it, it had to be spectacular, practical and
somewhat challenging - as if CRPS was not challenging enough. I mean everything
about it from holding the hammer or screwdriver, to cutting the wood, assembling
and finishing off was challenging). I decided on a 3/4 loft bed with cupboards
under the bed where he could store his toys. This was probably one of the most daring
things I have done since I have been diagnosed, and while my pain levels were
still through the roof - but I started on this project. Now normally such a
project may take a day or 2 up to a week, depending on how much time I have to
work on it.
I just need to add - one thing that I did not do was the routing of the edges.
Sorry but I just did not trust Chucky enough to do this after the great job
that I have done up to that point - in spite of Chucky - so I asked a friend to
do that. But for the rest of it I was able to do it by myself. Yes, it was not
as perfect as I had hoped, yes some things I would have wanted to do
differently, yes the fine motor skills were hell, especially when I made the
knobs, but I did it, I conquered something in spite of this disease.
For those of you out there that are struggling with CRPS, may this be an inspiration for you to challenge yourself in spite of the CRPS. No matter how small you start, take the challenge and regain some of your life that was stolen from you.
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