CRPS My Journey: Chapter 21 - Taming my demons!

Taming my Demons

In the previous chapter I spoke about going off Cymgen. As strange and ironic as it may seem, I think I am at a point now, being off Cymgen, where I am actually starting to miss some of the "lack of emotions and disassociation" - in certain aspects of my life in any way. Do not get me wrong. It feels great to be able to laugh again, although there are still times when it takes a bit of effort to do so. Being able to start connecting with my family again is also amazing. What I do miss though, is being able to feel indifferent whenever I experience a crappy day, whether it is physical or emotional. It feels crap to feel irritated and frustrated, to feel emotional hurt and to just feel emotional about stuff - especially if you have not felt that and dealt with it for the last year and a half. I know it is part of being human and part of life, but I don't know what scares me most...feeling this way about and coping with these emotions, or not trusting myself to become too excited when I feel joy and laughter (not fake or forced laughter, but real, out-of-your-belly laughter). Starting to feel emotions of joy and laughter feels like new unfamiliar territory to me.

There are definitely times when I just want to go back to that disassociated feeling of "it is what it is...facts are facts and emotions...well bleh". I realise that I have gained a feeling of being content and sheltered in my state of not being able to show or feel emotions. It has become a sort of a safe haven, where I could say what I want, and do what I want, and think what I want, and deal with whatever comes my way without having to worry about consequences or feelings, as it did not affect me emotionally. Things like re-evaluating my life, or my life choices, thinking about my career, where I am headed and if I am still where I need to be, has in a sense been both easier, but also more difficult when I was on Cymgen. It was easier in the sense that I could make decisions and evaluate things more clearly without acting from an emotional state, or become emotional about it. On the other hand, it became more difficult in the sense that I did not have the emotional connection to push me to the point of making life altering changes in certain areas of my life.

Intellectual Intelligence vs Emotional Intelligence

So there is definitely something to be said for having both intellect and emotions - as with everything else in life, they balance each other out. Often I experienced that I did not have the courage to make certain life altering decisions, for example putting myself out there for new job opportunities, or furthering my studies, maybe even starting my own business, as I always felt that my hand was holding me back. I was able to intellectually calculate the risk and work out the pros and cons, but was not able to bring myself to get past Buddy, in order to pursue other opportunities. When I thought about Buddy, it was mostly intellectual and calculated (in comparison to when I was diagnosed and in emotional turmoil), which created only more of a lack of trust in my own abilities, despite having achieved what I have over the last 2 years in both my work, as well as the projects that I took on at home. Getting my emotions back is suddenly like pouring fuel on a flame and seeing how it wants to run wild and out of control. So the battle now is to get that balance back, having made the intellectual assessment, I now need the emotional drive force.

Both Intellectual Intelligence and Emotional Intelligence are needed to determine success in life. Psychologists like Daniel Coleman, Robert J. Sternberg and others explains this as follow: "Emotional skills are a better predictor of success in life than intelligence. Though emotions might not be as helpful when doing math problems, they are the compass we use to navigate life. Our emotions set the direction, our intelligence figures out how to get there. When it comes to understanding who we are, what we stand for, and what we want from life, our emotions are what drives us."

In certain instances, my lack of emotions actually helped me to be better at certain stuff, especially in the workplace, while in other instances it created a rift or wall between myself and those that I care about. And although I struggled with not feeling emotions, especially towards the end of my Cymgen treatment, it did help me to become a stronger person. I think that I needed to have that experience in order to build certain character traits and coping mechanisms, in a very fast and short time, which I otherwise might not have been able to do at all. So, you might say that I needed to be able to concentrate on my Intellectual Intelligence, as the sensitivity of my Emotional Intelligence was heightened beyond control.

CRPS is not something easy to deal with, and as I have said before, I was at a point where I had to choose the lesser of two evils. And for a year and a half, it was being on Cymgen rather than dealing with excruciating pain every moment of every single day. This time around, it is finding my way back to my loved ones, even though the pain has doubled or become a bit more consistent again. BUT if I did not go through what I had gone through on the Cymgen, I would not have been able to deal with the extra pain and exhaustion and burning that I am currently experiencing. So in no way do I have any regrets for being on Cymgen. In actual fact, due to what I said in the beginning of this chapter, I need to prevent myself from going back on it again (as I do still have a full month's stock). Yes, I know I had my demons while being on Cymgen, mostly caused by Cymgen, but sometimes I just miss some of those demons...just a little bit. But I think the possibility of having to deal with the initial nausea again, do discourage me somewhat of using what is left of my Cymgen.

Correlation between CRPS, Meds and Weight Gain

So when I started on Cymgen, I weighed in at 114kg (about 251 pounds) and at the time I was actually slowly starting to lose weight, as I wanted to bring my weight down. That was one of my goals, I wanted to come down to at least 100kg (220pounds) so that I could live healthier, feel better about my weight and just be able to manage the hand and neck and everything else much better. The main reason that I was at the doctor that day was so that I could be placed on Cymgen for the pain management. So after almost an hour, as I was leaving the doctor's office, she turned back and said, "Oh by the way, you might gain some weight on this medicine". Ah great...just what I needed to hear. Flip, so as if having a hand that thinks he is his own person and being cut off from the rest of my body was not bad enough, I now had the possibility of gaining more weight, while I am actually trying to lose weight. Why could my weight not feel cut off from my body? Then I would weigh less. Or even Buddy - Chucky at the time? Look I am just saying. He did not want to be part of my body and he made sure that I knew that, so why should I carry his weight with me? Couldn't the fact that he felt disconnected from me, show in me weighing less?

For the first month I actually started losing weight. I remember weighing myself one morning and thought, "Hah, nailed it, take that CRPS and Cymgen...I lost 4kg (almost 9 pounds) and the doctor said I'm going to gain weight". And I started to feel good about myself. Yes, I am losing weight, this is awesome! I am not in the statistics of gaining weight on these meds, Booyay! Take that! (But then again, I was nauseous for the first 4 weeks - 24/7 - which may explain the weight loss)

Yep, I should not have said that. It was as if the meds and the CRPS ganged up on me. "You thought you going to lose weight? Not on our watch bro. We gonna show you. We gonna give it to you!" And they did. They got in there boots and all. No compassion, no remorse...full-on, no-compromised weight gain. I did not eat more than usual; in fact, I ate less at times. I actually started to eat less takeaways and chocolates and stuff, but still my weight climbed...and I became less active due to the pain.

A year and a half later, and I get weighed in for my Rhizotomy (sounds like I was weighing in for a boxing match ha-ha). I look at the nurse and I say, "Nope, that scale is wrong. Let’s weigh again.", So he weighs me again. "Nope, that scale cannot be right, but let’s go with it for now". So I get home later that day and I get on my own scale. What the hell! Freaking 127kg (280 pounds). Are you freaking kidding me? I can't say, "No let’s do it again". This is my own scale, and it confirms what the scale at the hospital told me...TWICE! I lost 4kg (9 pounds), so that I could gain 17kg (37 pounds). Never in my life have I weighed this much.

By now, we know that weight gain can be a side effect of CRPS, as well as Cymgen (Cymbalta/Duloxetine). Thus a double whammy. There are CRPS warriors that actually lose weight from CRPS. I am not one of them.... NOPE. Not even close. Studies have been done on the relation between CRPS and weight gain and one of the outcomes of such a study is what they call "Weight gain - unintentional". This refers to weight that is gained, without you actually trying to gain weight, not necessarily by the disease or syndrome itself, but due to the treatments and medication that you're on, although it can also be due to how the neurotransmitters in the brain is affected. One such study states that Unintentional weight gain was found to be associated with 3,911 drugs and 3,915 conditions. But before we all get excited and start saying, "See I told you it is not my fault, I have a condition", let's not forget that our lifestyle and what we consume and our lack of exercise also plays a major role. Unfortunately for some conditions, like CRPS, the pain is so bad that exercise is nearly impossible. That is a fact. When you suffer from chronic pain you are already tired, and you are not in the mood for physical exercise. And with our rushed life styles nowadays, if you do not get exercise, your body struggle to get rid of excess fat that you take in, or that your body produces by the sugars and stuff that you take in. So unintentional weight gain can also happen due to an increase of food and/or drink intake, without exercising.

I must admit that due to the pain, I fall in that category that find it hard to start exercising. Don't get me wrong, I miss hiking, kloofing, caving, climbing etc. - I just struggle to motivate myself through the pain, knowing that I am even gonna have more pain afterwards. On the other hand, apart from losing or managing my weight, I need to exercise in order to activate my internal drug cabinet, so that my body can manage the pain better. It leaves you in one hell of a catch 22. When I got on that scale for the 3rd time, I just felt "Damn, I miss not having any emotions right now. Why must I start getting some emotions back at the same time that a piece of technology is telling me I am fat and overweight. It’s not fair. It is a conspiracy - don't know between whom, but it must be."

127kg (280pounds). If you type into google: "How heavy is 127kg?", these are what comes up:

It's about nine-tenths as heavy as a Panda Bear. The weight of a Panda Bear is about 150 kilograms

I am freaking Kung Fu Panda...without the kung fu!!! And it gets worse:

It's about one-and-a-half times as heavy as a Kangaroo. The weight of a Kangaroo is about 85 kilograms.

It's about half as heavy as a Pig. The weight of a Pig is about 250 kilograms.

It's about two-and-a-half times as heavy as an Octopus. The weight of an Octopus is about 50 kilograms.

It's about three-tenths as heavy as a Horse. The weight of a Horse is about 420 kilograms.

It's about one-and-three-fourths times as heavy as a Beer Keg. The weight of a Beer Keg is about 72.80 kilograms.

See the last one? I don't really drink beer, so I cannot even say that this is the cause. And why do they explain it at the hand of animals and beer? I know food and alcohol attribute to weight gain, but really?

But all jokes aside, it is concerning that there is a correlation between CRPS and weight gain (or weight loss in some cases), and that it is aided by the actual drugs that are used to treat it. It does mean that if I don't want to be Kung Fu Panda, I need to fight (no pun intended) twice as hard to motivate myself to push my pain barriers, so that I can start exercising - especially when I am feeling weak and sore and exhausted. And as with a number of warriors that I have spoken to over the past year, many of them do not only have CRPS. Many of them have other conditions as well, like myself with my neck. So that automatically makes you over cautious of doing something that may potentially hurt you or worsen your condition(s). I think there is a fine balance between being cautious and pushing your limits, and being totally reckless.

As I have shared my own experiences the past year, I have always tried to establish that one should be responsible in whatever you do to manage CRPS.

1. I need to understand my limitations, and also know that my limits or "barriers" will never be the same as it was before I developed CRPS or the neck issues. If I do not understand that, and understand what my new limitations are, I am not going to be able to push my limits in a responsible manner. That is where it becomes reckless.

2. I need to understand that everything that I am going to do is going to have some consequence. It can be positive in the sense that there is a reduction in the pain or even remission, or it can have no effect at all, or it can be negative and push my sensitivity and pain levels in overdrive. So as I learn more about myself and the condition, I become more aware of what to expect and when to expect it. For example, if I am going to use my hand to do paving work, I know that I am going to have a few days of hell afterwards with major flare-ups.

3. I need to make a mind shift. I need to decide what I am going to do, or what I am prepared to do, and how far and at what pace I am going to do it, and commit to my decision. Set my goals. Realistically, I am not going to try and run a marathon, nor can I expect to do so in two weeks’ time. Realistically I can start by walking 2 km per day at a pace that I can handle, pushing it as I progress. Not only picking up the pace, but perhaps even pushing the distance as that initial 2km become "easier". (I am still going to have some days that I might not be able to accomplish the 2km, but that is my goal for the start. and if I can do that five out of seven days, with two days perhaps only 500m or even rest days - then that is okay, as I need to be responsible, without simply throwing in the towel.

4. I need to work on (a.) motivating myself by setting some goals; and (b.) ask others to motivate me. Best motivation is to get a walking or exercise buddy that do this with you and cheer you on. You do not want a Major Pain character, but you want someone that will motivate you by using your pain, abilities and experience as a guideline, rather than trying to create a boot camp.

5. I need to JUST DO IT! Planning and goal setting and everything we have spoken about is crucial...but it has NO meaning if I do not get out of my comfort zone and take action. I can have all the knowledge and motivation and faith, but if I do not get out of the boat, I will never know if I will actually be able to walk on the water.

Losing weight, as a general rule for most people, is not easy. Even more so for somebody that is suffering from chronic pain or someone who is on medication that causes you to gain weight - or both. Take my wife for example. She has been living with SLE (lupus) for the past 22 years, and because of the type of pain and weakness that SLE creates, it has been a struggle for her to exercise or lose weight. So the struggle is real. But it might not be impossible. Interestingly enough I have found that my reason for trying to lose weight, let’s say 3 years ago, is vastly different than what my reason(s) is now. Three years ago it might have been to get a beach body or look better, perhaps feel better about myself. Now, it is to live healthier, to be able to handle my CRPS and neck issues better and just to take unnecessary strain off my healing process - and let's not forget, to do stuff with my kids. Re-evaluating my reason(s) for losing weight, suddenly makes it more accessible, bringing it closer into range, as it starts to fit into my goals that I have set for myself in coping with CRPS.

I know that there are many studies that have been done on the relation between weight gain and your blood group for example. I do not want to get into that, as that is not what this chapter is about. I know that studies were also done on the relation between weight gain and the Covid lockdown. Interestingly enough, the results are not that surprising as the factors that they found to be causing weight gain during lockdown was:

Lack of sleep, decreased physical activity, snacking after dinner, eating in response to stress, and eating because of the appearance and smell of food are behaviours linked to weight gain during self-quarantine.

For CRPS warriors, these are normal everyday life. Lack of sleep, decreased physical activity, eating disorders...and as studies have also shown over the years something like lack of sleep have a number of negative consequences on the body and your health in general. One of the things that studies on sleep deprivation show is weight gain, increased pain levels, increased stress levels, mood swings and increased irritability, depression to name but a few. All symptoms or issues that CRPS warriors struggle with, or rather have the possibility of struggling with. Sleep was one of the first things that was addressed right at the start of my treatments, as you will see in the earlier chapters. I couldn't sleep because of the pain, but I needed to sleep to be able to manage the pain. A "simple" thing. If you are tired due to a lack of sleep, you have less ability to fight or manage the pain, because you just are too tired and not in the mood to fight. What I have found is that when this happens, I am irritated as hell and do not want to deal with people. And yes, when I am that tired, I do get the munchies. I want to snack, either to keep myself awake, or because I feel hungry and it feels like nothing fills that hunger. Which again increases my risk of gaining weight. The point that I am trying to make, is that it becomes a vicious cycle. And NO-ONE can break that cycle other than you or me that is caught within that cycle.

DBT: Emotion Regulation

The next step I want talk about in DBT is Emotion Regulation. Last time I jumped from 1 to 4, and now I am working my way up, but bear with me. I do have a reason why I am doing it this way.

Definition - learning to make your emotions work for you. Learn how to recognize when an emotion is unproductive and change it into a more productive emotion.

Ahhh...now you understand why I am touching on this in this chapter and not on Distress tolerance, as this is the one thing that I am dealing with at the moment. As you have seen in the first part of this chapter, I am at a point where I have to start dealing with my emotions, like a baby that is learning to eat, going from milk, to soft food, to more solid food. I am at the point where, as said before, I am dealing with trying to cope with a number of emotions that I have not experienced for 2 years, which is mostly crap at the moment, but necessary. I do not want to feel some of those emotions...but I need to be able to feel them and work through them. (And people around me obviously feels much stronger about this than I do - I would rather deal with that demon that takes away that crappy feeling, but it is what it is - it need to be done).

Emotional Regulation therefor plays a big role in the current phase of where I find myself. Yes, it has played an enormous role in the beginning, trying to get a hold on dealing with CRPS, but now I am right back at that place, just in a different phase or scenario. Two years ago I had to start dealing with the anger and false sense of guilt, and all those bad emotions that was caused by this disease that has sprung on me, trying to cope with this immense pain. Cymgen helped to cut that part off so that I could focus on gaining and growing my coping skills. Now, although still having to deal with the pain, I have to deal with other more subtle and more painful emotions that I have not been used to for two years. Feelings of being pushed aside, fear, stress, heartache - all those things that I suppose makes you human.

I have learned to recognise the expected emotions and whether they are productive or unproductive, although I could not experience them at the time. So, it was easier to deal with the expected emotion, as I have not been able to feel it and act upon it emotionally. Now that I am starting to experience them again, I am learning to make them work for me, by changing the unproductive emotions - like feeling crap after a bad experience - into more productive emotions that can motivate me and become my drive force to change my situation or do something about it, rather than just sulking about it. Emotions like Anger, frustration, depression and anxiety are strong emotions that can mean the difference between fighting CRPS and just throwing in the towel. As Hesti said the other day, whereas other people that struggles with CRPS, like I do, may have arrived at a point where they filed for disability, I have been able to push my barriers and learn to live in a symbiotic relationship with my hand. The idea thus of Emotion Regulation is to learn how to manage your feelings, so that it decreases your vulnerability to any form of painful emotions caused by situations that are entirely out of your control. CRPS is out of my control. I did not ask for it, I did nothing to deserve it, yet I developed it. This caused me to become angry, anxious and frustrated. I had to learn to manage these emotions, but because my body's sensitivity was so heightened, I struggled with this. Cymgen, without anyone knowing that it would have this effect on me, and without it being the intended purpose, helped me to deal with this by taking away my emotions for the time that I needed to be able to get skills in place that would eventually help me to better understand my condition, and enable me to turn my unproductive emotions into productive emotions, once my emotions started returning. My body's sensitivity is still very high, and crappy emotions are still......well crap. But I am able to deal with this much better than what I were able to do two years ago.

In Chapter 9 we spoke about radical acceptance and throughout the chapters we touched on mindfulness, which all forms part of Emotion Regulation. So I am not going to go into more detail on this, but I will place a link in the next chapter where you can go to, to learn more about DBT and the various phases.

Closing off this chapter, my kids started watching a program on Netflix called "Magic for humans". I am adding a clip here from the 3rd season, the 1st episode. It is a very interesting experiment that this guy does, which gives one a bit of insight into CRPS and what happens in the brain when you have CRPS. This is the basis for treating CRPS, as you will see in Chapter 3 where I talk about Mirror Therapy. Hopefully this will give you somewhat of an insight in what happens when you have CRPS. Enjoy.