CRPS My Journey - Chapter 4: Reborn - Death to Chucky

CRPS is also known as Suicide Disease:

Many patients with complex regional pain syndrome (CRPS) have been known to be at risk of suicide, due to severe pain and its comorbid conditions. The risk of suicide may be associated with affective instability, which is an indicator of emotional dysregulation. - National Library of Medicine

According to the McGill Pain Index, CRPS is one the highest pain levels with a pain score of 42 out of 50. This is higher than amputation and child birth. Partly due to the fact that there is no known medication or therapies that can cure it, yet there are still medical professionals that do not acknowledge it. And yet there are so many people suffering from CRPS that have to live with this immense pain every single moment of every single day.

Pain: An Abstract Construct...yet so REAL - the Darkest hours!

Pain has the ability to change your personality. It can change the way you interact with people and how you react to life events, challenges and everyday situations. It can cause you to lose all inhibitions. You know, that filter that one normally has, that keeps you from just bluntly saying how you feel and what you think...well in my case pain caused me to lose that completely. I was like a raging bull, and the worst part was that I couldn't restrain myself. And because of the pain I did not want to restrain myself as I felt that I was being real to myself and to those around me. I became irritated and blunt. It was not much that I became rude, I just lost my tact in talking to people, especially in the workplace.

Things became black and white, without any grey areas. I became factual without showing empathy. This was especially evident when I had to do disciplinary hearings. I became ruthless. And some part of me felt okay with this. I felt strangely motivated to be completely and openly honest to a point that I could not help showing my true feelings. As the pain was real, so was the honesty. I just did not have the strength to sugar-coat it, or put up my best fake smile while I actually felt irritated when I had to repeat the same thing over and over again on things that has been (for example) a regulation for the last two years already.

Staff and colleagues started avoiding me, and started to talk behind my back. I often would be too straight forward, too strict, too outspoken on matters that had to be addressed. The problem with this was not my focus on what was right and wrong, or being outspoken or even strict. The issue was the absence of my sense of humanity. Whenever I sent emails regarding topics like Health & Safety or Covid Regulations, staff would be cringing as they expected a hot tempered email. As I poured myself into my work to get my mind off the pain and off this dark cloud that was hanging over me, my drive to sort out problematic issues in the workplace became even stronger without any need to show compassion. As long as I followed regulations and ensured that I had my facts straight nothing else mattered. And slowly but surely I was starting to isolate myself from people.

Unfortunately, the fact that I used cortisone also just worsened this. The cortisone helped for the swelling, but usually when I take cortisone it tends to make me irritable and short tempered, which in this case was just fuel on the fire. So I had this combination of intense pain and burning, mixed with the side effects of cortisone and topped off with the internal struggle of trying to cope with something so real, yet so unfamiliar that I was heading for total disaster. It was like a tsunami waiting to happen. It felt like I changed places with the image in the mirror, and although I could see what was happening to the real me, I was unable to do anything about it. Some of my colleagues did not know what I was going through, as I was not ready yet to share my struggles and my pain with everyone. I did not want people to look at me differently and feel sorry for me. I wanted to be treated as normal...as if anything that I was going through was normal.

Sharing feelings and experiences

Luckily I was referred to a psychiatrist that again referred me to a good psychologist, Wendy, to assist me with coping skills. When people talk of seeing a psychiatrist or psychologist, there is often this stigma that cause you to rather not mention this to anyone. Perhaps it has something to do with the way we were raised, or the image that is presented to us by the programs that we watch on media and social media. But again this was something that I had to overcome. I had to decide which was more important: dealing with CRPS and everything that goes along with it; or hiding away so that I won't become a statistic of a stigma that we ourselves has created in our minds. Since I have been in ministry for most of my life, I was used to being the person that everybody confided in. However, I was not used to open up about my own feelings and struggles, especially to someone else in a therapy session. So I had to learn that it is okay to share, no matter how difficult it may be - and that even I needed to do that. So yes sure, sitting on the other side of the table was definitely awkward, and I definitely felt way out of my depth.

What I did realise though, was that this was something that I had to do, that I needed to do and that it would eventually help me, even if it was just to make sense of what was happening to me in the moment. Although this was not a quick fix, it did help to calm me down over time. And the more that I were able to calm down, the more I were able to start focussing on the Graded Motor Imagery and Mirror Therapy. Talking to Wendy was different than talking to Hesti in the sense that, whereas Hesti explained to me and taught me a lot about CRPS - with Wendy I had to do most of the explaining. But it was also good in a way, as it helped me to open up much more.

Whereas Hesti specializes in CRPS, this seemed to be quite a new field for Wendy as well. I think what helped me the most getting to grips with this whole thing was just that - receiving information from Hesti and in return sharing that information in how I understood it and experienced it with another professional that could help me on a different level. It allowed me to start working through all these scrambled information and fears. Somehow, this was also easier than trying to explain this to colleagues, friends and family. I think partly because there was no relationship with Wendy yet, as with the people that I have known for years, but also because there were no looks of scepticism, feelings of guilt or looks of pity - which was how I felt or believed people closest to me would react. And the reason I think that I felt that way, was because I felt guilty, as if I was letting everybody down. Which of course was not true. It was unfounded guilt, but that is just it. CRPS has the ability to make you feel strong guilt towards the people closest to you - well I certainly experienced that.

"Enlarging" the gap...slowing down the messages!

At the same time that I started with emotional therapy and coping skills, the psychiatrist put me on Cymgen 60, a generic of Duloxetine - in other countries it is also known as Cymbalta - a horrible drug in many ways, but also in certain cases the only drug that does help to an extent. For the first 4 weeks I was nauseous 24/7, to such an extent that I thought of calling it quits. I remember Hesti pleading with me to just stick it out for the initial 4 weeks, reaffirming that it will subside - and I am glad that I listened. If I had stopped within the 1st 4 weeks, I would definitely not have started on the drug again. I have renewed empathy with woman that struggle with morning sickness throughout their pregnancies.

I was placed on this drug in order to manage the pain more effectively. As the CRPS caused my hand to send pain signals through to my brain at an alarming rate, we had to try and slow down those signals. In layman's terms, the purpose of Gymgen was to do just that, to enlarge the gap or slow down the rate at which these messages came through so that my system would not constantly operate in overdraft, and constantly be oversensitive. The less sensitive, the more I would be able to focus on learning my coping skills, on managing my pain better and on focusing on getting the CRPS in remission. Yes, the Cymgen did come with its own set of side effects, which we will focus on in a minute, but for now - after pushing through the initial 4 weeks of nausea - my nervous system started to "relax" a bit. It is worth noting that Cymgen, up to now still, never took the pain away, but it made it more manageable and less of a constantly throbbing pain.

Horrible Side effects

Unfortunately, there is some side effects to using Cymgen, like there is with all medicine. One of the major side effects that I personally have experienced, and still does, is what they call Dissociative Disorder. It is an almost out-of-body experience where you would be sitting in a group, but not really feel like you are being part of the group. You would occasionally take part, but as if you were sitting on the outside of the group, while looking back at the group without feeling part of the group.

This can also lead to emotional abstinence, as in my case. In other words, the absence of feeling and acting upon emotions. So what I experience is that you do not really get sad, nor do you get happy. It is just a state of being - an "It is what it is" attitude. I really need to put in some effort to create half a smile. I remember about a month and a half after I started on Cymgen, I cut my left hand trying to cut a piece of paper. An hour later my phone fell and the screen cracked. Another hour or so after that, I stopped at the garage and they put petrol in my car instead of diesel. A series of events that happened within a three to four-hour period. Now usually this would upset anyone, and gradually it may build up to anger in such a way that you would probably lose it. More or less the normal reaction for any sane person when a number of things goes wrong in such a short period of time.

In my case however it was like I picked up my phone and I remember calmly saying to myself, "oh okay, the screen is cracked". At the garage, instead of becoming upset, I just responded "oh I told you diesel three times and you put in petrol. Okay, how are you going to fix this now? It happened, it is what it is". Even the garage manager looked at me and told me if it was her she would have been furious. It was not as much a feeling of being calm as much as it was a feeling of indifference, almost a feeling of nothingness - if there is such a word.

Another example was when our dog disappeared from our yard. I calmly came in and told Teresa that Zoey is gone. What "scared or shocked" me was the fact that I felt indifferent to the situation. I did not experience sadness, fear, anxiousness, regret, panic or anything at all. Yes, I love Zoey and she is a part of the family, but I did not even feel the need to comfort the kids because their dog was gone. And that probably scared me the most. It is a zombie-like feeling and my actions almost robot-like. Fortunately, Zoey was found and happily reunited with my family, but her being gone and her being found did not alter my absence of feeling anything in the least. For me this is probably one of the worst side effects of this drug.

Another side effect that I experience is a lowered libido, which seems to be quite a common side effect - and not at all a nice one at that. I also started experiencing what feels like claustrophobia when I would be surrounded by people, something that I never struggled with before. This usually happens when I walk into a shopping mall. My hand would start to tremble and burn, I would start sweating, my breathing gets erratic, I get anxious, my heart is beating faster, it feels like I am in this bubble that is going to pop at any moment when I get near other shoppers. I find myself starting to hide my hand again, becoming overprotective, avoiding being too close to other shoppers.

Often the drug also causes brain fog, which just make you feel like you are zoning out all the time - just staring into the distance. Someone would talk and you will listen and hear everything that is said, but appear to be non-responsive and they therefore assume that you are not listening. It affects my short term memory and often results in me struggling to get to some of the most basic words or terminology when talking to people - even on subjects that I am knowledgeable about. I think some people might think that I am having a stroke when my sentences at times come out as slurry or irrational. Funny enough though, writing helps to keep me focussed and enables me to organize my thoughts.

I know that for a lot of people Cymgen or Cymbalta is a horrible drug, and it is one of those drugs that you cannot just let go - you need to be weaned off it over time. And it probably is a horrible drug, and yes I do not like the side effects at all, but for now the pain of the CRPS outweighs the side effects of the drug, and although it is horrible side effects, and although I am trying very hard to fight these side effects I am willing to stay on it while the pain is being managed - for now at least. For now, it is probably choosing the lesser of two evils to at least help me cope and manage my pain. So the purpose of this chapter is not to condone nor to promote Cymgen or Cymbalta but to purely share my own personal experience on it.

Alternative Treatment

Yes, as many other CRPS sufferers, I also went to see a Pain Management Specialist. And as there are CRPS sufferers that had wonderful experiences with their Pain Management Doctors, I had quite the opposite. According to the doctor that I visited Cymgen is the last line of defence as this is the strongest of drugs that might help for CRPS, especially as none of the others helped. This however was not the bad experience, as I have already been informed of this by my other doctors. No, it was when he started to sound like a sales rep, trying to sell me a "solution" to "fully cure" CRPS. I mean who wouldn't want to be fully cured? Unfortunately, it is not that easy. He sat me down and explained that the last step, should Cymgen not help, would be to get a Spinal Cord Stimulator (SCS) which is a device that is implanted under your skin, with wires that goes all along your spine and into the affected limb. It basically does the job of neurotransmitters in your body. What concerned me was the fact that he tried to sell this to me as a 100% cure for CRPS. There is no 100% cure, but besides that, I am not ready for taking this step yet. I remember when I told one of my physicians about this. He told me, "Run...no-one in the medical profession can ever sell you a 100% cure for a medical issue, not even me". I recall him telling me that from all his patients he only had two patients ever that he offered a SCS to, and those were patients where nothing else worked, not medication, not operations...and in their cases it gave them a 15% improvement. To those patients, 15% was a huge improvement as they were able to do things that would otherwise have been impossible. So yes it does work for some people, but not as a 100% cure.

Listening to testimonies on the various support groups, SCS seems to be a big topic of debate. On the one hand you have people for whom SCS makes a huge difference, which is awesome. On the other hand, you have those for whom it did nothing and/or caused extra pain or discomfort, even made it worse. Unfortunately, it often seems that those that the SCS does not work for is in a higher percentage group than those that found it to be successful. It might simply be that the success stories are not heard as often as the stories of failure. I do think that it also differs from person to person, just as with medicine. For me Lyrica did nothing, for somebody else it may work wonders. You only have to look at how CRPS work to realise this. For me cold is hell for my CRPS. It causes flare-ups, it increases the pain and burning. For other people their trigger is heat. For me when my hand is burning, ironically Heat helps to calm it down - not cold. For others, cold calms it down and not heat. The triggers for each person is different, which makes sense as we are all different people with different personalities and makeup. One of the reasons why it is called "Complex".

Spreading of the disease

One of the issues with CRPS is that, unless there is visible swelling or skin colouration, it is also one of those diseases where patients often seem to be "healthy", when in reality they are in immense pain, very tired and often also depressed. It is a disease that is often not visible on the outside...but that does not make it less real than diseases like cancer, lupus, MS and a number of other diseases that is often also not visible on the outside, until it flares up. What it is, is a disease that is often misunderstood and misdiagnosed. And if you have not experienced it for yourself, it might not be easy to fully comprehend what CRPS sufferers are going through. It is not always easy to accept that which you do not understand. I mean, we that do suffer from CRPS, experience it every moment of every day, and even we do not understand a lot of it. I have said this before. Each day is like a lucky packet - you never know what new surprise(s) you are going to get.

Some sufferers experience CRPS in one limb only, others in multiple limbs and still others might have full body CRPS. Some sufferers experience the CRPS spreading to other parts of their body while others only experience it in one part of their body. Yes, it is possible to spread, and it is a real fear for many sufferers that it will indeed spread. It is a nasty disease that you cannot cut yourself off from, no matter how many skills and focus and meditation you use. Yes, all of this is important and it does help a lot, and you should do it, but the fears are always at the back of your head. For myself, when I have a flare-up, it often feels that it is moving to my elbow. Often I put it out of my mind, hoping that it is just displaced pain from the flare-up that I am experiencing in my hand, but what if...

CRPS is not a new disease, nor is it an older person disease. When I was diagnosed, it was the first time that I have heard about CRPS, but speaking to other sufferers I quickly learned that there are a lot of people that has been living with this for years and years. I also learned that there is a lot of teenagers and even small children that are suffering from CRPS.

To be or Not to be...what to do with Chucky?

I had to make a decision early on in my diagnoses and treatment - whether I am just going to accept CRPS as my new norm of living, or whether living in spite of CRPS is going to be my new norm. I chose the second option. Have I been able to reach this yet? NO not by a long shot, but I am working at it every day. And as long as I am able to be working at it, I have not stopped living. One of the stages of grief that you have to go through is acceptance. This is not accepting CRPS as a death sentence and therefor giving up. It is rather accepting it for what it is and working on getting a better understanding of it so that you can focus on living life to the fullest. It is accepting that the past is just that, the past. It is accepting that you need to rethink the way you do things, in order to build a better future. It is accepting that no matter how painful CRPS is, you have a second chance on life, not an easy one, definitely not a perfect one, often a challenging one, but a second chance on life none the less. What you do with it...well that is up to you.

One of the changes that I had to make was to change my attitude towards Chucky. I had to start loving it again, nurturing it, praising it when it did something well and showing empathy and understanding when it failed or hurt or just did its own thing. So we made an agreement - we would try not to hurt each other. I would stop seeing him as Chucky the vengeful one, regardless of whether he complied to this agreement or not, but because I wanted him to be part of my body again. So as a start I would start to see him as my apprentice...and not as Chucky anymore - regardless of how far and distant he would feel.

I would approach him like when you are trying to win over the trust of wild and scared dog or cat that has been abandoned on the street and that had to fight for himself for so long. In the same way that you would approach this dog/cat, trying to win over his trust so that you can take care of him, in spite of his mistrust of humans, I had to approach my hand as well.

Gaining mutual trust was(is) not easy. I had to verbally tell my hand that I trust him not to cut off my left hand while using a grinder, or not to hit my left hand with the hammer - that they are not enemies. It did not take away the fear of doing so, and at times he would still drop things or injure my left hand, but it suddenly felt that there was more of a symbiotic relationship developing where I would listen to his pain, but he would also try to behave. Yes, there are still things that I do not feel comfortable in doing, like belaying my child when he is rock climbing for example. So yes I still have not tried it, not because I do not want to - I so badly want to - but because I still do not trust my hand enough to do so. It is a process.

Another thing that I found was that almost always I would experience more extreme pain after I tried something or did something where I had to use my right hand. I recall my staff having to do paving at work. They have never done this before so I had to teach them how to do it. As I like to be hands-on, it was very difficult for me to do training from the side-lines. Being new to this, it took them 3 days longer than it would have taken an experienced team, so on the last day I decided to jump in and assist them. This was the Thursday before a long weekend and we finished the job late at night. Although I tried as far as possible not to use my right hand, it was not always possible. So for the rest of the weekend I was on my back, neck flaring up, right hand swollen, stiff, sore, burning, oversensitive, really given me hell.

So the week after, I discussed this with Wendy and she replied with this: "Knowing that your hand will react or counter react to what you are doing, you will have to choose your battles. Ask yourself, this task that you need to do, knowing that it is going to have the following response from your hand - is it necessary, is it worth it? Some tasks may be necessary or worth it - like building a bed for your son or helping the staff to accomplice their goal - know then that you have to expect your hand to flare up and be prepared to deal with that. If it is not necessary or worth it, do not do it - maybe somebody else can do it. You need to learn to give tasks over to them. Know to protect your hand, but also know to pick your fights carefully so that you are prepared for what is coming next"

And this is probably one of the hardest lessons that I had to learn thus far. For someone who likes to be hands-on, in control and be actively involved, it tends to be very difficult to let go and let others. But you know, when you do...people may just surprise you.