CRPS My Journey - Chapter 2: Chucky Part 1

Support

There was a time when I thought I would never be able to talk about my experiences. But I have found that writing this blog is as much self-therapy as it is creating awareness for a disease that very few people, even medical professionals know about. Being part of various CRPS and RSD support groups it is alarming to see how many people suffer from some form of this disease and how vast and diverse people's symptoms and experiences are. Even more alarming is the testimonies of how many people experience negative, demeaning and dismissive attitudes from loved ones and even the medical professionals that are supposed to help them through this frightening/scary time in their lives. In a perfect world sufferers from this disease should not have to deal with the fear that is caused by the lack of knowledge and understanding from those that have not yet experienced this disease for themselves.

Unfortunately we do not live in a perfect world and due to the complexity of this disease a lot of sufferers are pushed out in the cold where they feel isolated and even guilty for going through what they are going through. CRPS in itself already have the power to make you deeply depressed and does not need the support or encouragement from people that do not understand or acknowledge the disease. My prayers are that this blog will give some insight and understanding of what sufferers of this disease experience on a daily basis, in the hope that they may receive true love and care and support in their fight to live life as full and normal as possible.

The road to recovery and the Rise of Chucky
So getting back to where it all started for me, I don't know which was worse - the operation itself, or the occupational therapy thereafter. It felt at times as if the therapists had no mercy in pushing me to achieve certain goals. Of course the physiotherapy for the knee was challenging, but not half as challenging as the occupational therapy for my hand. I remember sitting in my office wanting to throw this little squash ball, that I had to squeeze, as hard and far away as I possibly could. It was so frustrating not being able to even make a dent in the ball. No matter how hard I tried to squeeze it in my right hand, I was just not able to. In my left hand I could press it flat, and that was almost worse as it felt like my left hand was mocking my right hand. My food had to be cut for me as I had no strength in my hand to even hold the knife, let alone press down on a knife to cut my food. The most simplest tasks like lifting a spoon, grabbing something, picking stuff up or even going to the toilet - things that we take for granted - became an enormous challenge. I had to constantly use my left hand to close my right hand in the hope that I would regain mobility in the hand. So I became angry and irritated to a point where I did not even want to look at my right hand.

My right hand began to develop its own personality, and it felt as if there was this war going on between my left and my right hand. Yes the therapy helped, but the progress was very slow and the pain...the pain did not ease. In reality it felt like the pain was getting worse. The doctor changed my medication, and then changed it again, and again - stronger meds, more meds, more combinations of meds...I've tried Targinact, Oxynorm, Stilpaine, Dormonoct, Lyrica, Celebrex, Trepiline, Mybulen, Xefo Rapid, Stilnox, Pax, Tramadol, Depramil, Synaleve, Prednisone and a number of other medications, but nothing helped.

My hand felt like it was on fire all the time. The only way I can describe it is like this: Imagine your hand as a glove filled with boiling water or lava and in the centre of that water/lava is a fire that never burns out. It keeps the lava boiling, intensifying the heat with every moment that passes. Next imagine tearing your skin off your hand so that the raw muscle and tissue is exposed. Imagine taking your raw exposed hand and pulling it over sandpaper. Now imagine experiencing all of this at the same time. That is what I experienced every day, and it would get worse at night - and it still does. Weird about this is that when I touched my right hand with my left hand it felt cold on the outside. Though, when my wife touched my hand it felt normal to her.

I did not sleep - I could not sleep and as the pain and burning and the sensitivity became worse and worse, so my hand's personality became more and more extreme. My hand did not feel like it was a part of me anymore. I would look at my hand and it would feel and look like somebody else's hand. It had this horrible sensation and I could not bear touching other surfaces. My hand felt distant and cut off from the rest of my body. And it started to do its own thing. I would often get this image of "Thing" from the Addams Family. And my hand would start jerking for no reason at all, usually when I was eating, causing my food to land on me, or when I had a screwdriver or knife in my hand, causing the screwdriver/knife to end up in my left hand - more than once. 

So I started naming my right hand Chucky and we embarked on this love-hate relationship...I wanted to help him, and he wanted to kill me (or at least kill my left hand). I often felt like taking an axe and chopping it off. And I really became afraid of my right hand and felt that I could not trust it at all. It started to affect all areas of my life. I became self-conscious of my hand, even ashamed of it. I would walk with my hand tucked away in my pockets. It started to affect my relationships, my self-esteem, my libido, the way that I talked to people, my work etc. My life came to a point where it was governed and controlled by pain. And it started to affect my knee and my neck as well.

By now, the doctors started looking outside the box for a diagnosis. They started to look at various possible theories and even rare diseases. This would mean more tests - more possibilities than actual guarantees. 

The Diagnoses
Knowing that I had a follow-up appointment with the Spine Centre, they contacted them to ask that some of these tests be done. The specialist looked at my pain levels and asked that I come back to see him the next day, and to bring my wife with. This sounded bad. It is almost never good when a doctor says that he want to see and talk to your wife. You expect him to give you bad news, like that you only have 3 months left to live or something.

So the next day we went back and he sat us down and started to talk about my neck, the diagnosis and the way forward. It was like a bucket of ice being poured over us. For the first time it became real as a diagnosis was made for my neck - Degenerative Disk Disease/Serious Spondylosis of the C4-5-6-7 vertebrae. Replacement surgery would eventually be necessary, but for now we had to monitor it. The moment that I start struggling to button my shirt or start losing balance I need to contact him immediately as the operation would then have to be done immediately to prevent me from becoming paralyzed. And then he asked about my hand.

He listened to my story and took my hand in his. He tested for sensitivity, swelling, colour change, sweat and hair loss. He read through the notes of the other doctors and the tests that they have suggested and then turned to us, "These tests would be a waste of money" he said, "the only thing that fits and ticks all the boxes is a condition called CRPS or Complex Regional Pain Syndrome. Commonly this disease is known as Suicide disease. I have some patients that developed the same symptoms after operations". Then he asked his secretary to call a doctor in Stellenbosch that specializes in Three Phase Bone Scintigraphy. He had to confirm the diagnoses.

A week later I went for the Scintigraphy. It was a long excruciating process. The test itself took about 3-4 hours. But a few days later the specialist phoned me to come and see him. The tests came back and it was confirmed - I had CRPS in my right hand. But that was not all. The type of CRPS that I have does not respond to any pain medication. The second ice bucket.

So what is the treatment then I asked? Physiotherapy, but not just any Physio. This would be an aggressive program where I would learn coping mechanisms and "self-treatment" through Mirror Therapy and Graded Motor Imagery and stuff...and lots and lots of patience. There it was again...patience. By now, patience was the last thing that I had left, and my hope was on its way out the door as well.

I was filled with various emotions to a point where I found myself in a very dark place not knowing what I felt any more. My faith has been shaken, I was losing hope, I was in emotional turmoil, my social life was over, work has become a battleground, I felt like a burden to my wife and a failure to my kids...and I felt more useless than ever before. How would I survive this? How could I expect my family to deal with this? My wife has been living with Lupus (SLE) for the last 21 years, how can I have something like CRPS and complain about it when she is always so strong? I am the one who is supposed to support and comfort her, this is not fair, this can't be happening...and suddenly I was angry at God and at the world. I felt that I was dying inside...and fear started to creep in by the backdoor of this haunted house. I felt lost, scared, broken...but I knew somewhere deep inside that giving up was not an option. And so my journey began...