CRPS My Journey: Chapter 26 - The Suicide Disease

Suicide Disease

"CRPS is known as the "SUICIDE DISEASE" because suicide is the leading cause of death of people with CRPS" (CRPS Awareness Fact)

Someone asked me the other day, seeing that Suicide is the leading cause of death for people with CRPS, if I have ever contemplated suicide myself?. Truthfully and thankfully I can confirm that I have not yet been driven to that point. Yes, I have contemplated cutting off my hand many times, but suicide...never. So in a sense you can say I have thought more of murdering Chucky, than killing myself in the process - especially in early days. Nowadays not so much, since Hesti set me straight on the crucial fact which is: Living with Chucky = CRPS / Cutting Chucky off = CRPS and Phantom Limb Syndrome.

Don't get me wrong, I still get mad at Chucky, and might lash out at him saying that I am going to cut him off, but at the same time I will protect him with everything in me. It is just frustrating I guess. Suicide however is a total different ball game. Yet it is a reality for many CRPS warriors for whom the pain and loneliness have become too much, losing all hope, seeing suicide as the final outcome or solution to dealing with this life that they have been dealt with.

But let's look at why CRPS is known as the Suicide Disease and why this is such a tremendous problem.

Suicide itself is a major global problem. The International Association for Suicide Prevention (IASP) and the World Health Organisation (WHO) released the following statistics in 2023:

• An estimated 703 000 people die by suicide worldwide each year.
• Over one in every 100 deaths (1.3%) in 2019 was the result of suicide.
• The global suicide rate is over twice as high among men than women.
• Over half (58%) of all deaths by suicide occur before the age of 50 years old.
• A previous suicide attempt is the strongest risk factor for death by suicide.
• Globally, suicide is the fourth leading cause of death in 15-29-year-olds.
• Suicide occurs across all regions in the world, however, over three quarters (77%) of global suicides in 2019 occurred in low- and middle-income countries.

According to the National Library of Medicine, patients with CRPS may have a higher risk of suicide than the "general population". In a specific study that was done on CRPS patients, it was reported that 49.3% of patients with CRPS considered suicide and that the actual suicide attempt rate was 15.1%. These rates are higher than those of the general population and other pain populations.

Consequently, many patients with CRPS are severely restricted in almost all areas of life. These restrictions pose a substantial challenge to them in their lives, which may lead to emotional distress such as depression, anxiety, anger, frustration, and hopelessness.

Patients with CRPS often experience flare-ups. Such flare-ups are difficult to cope with and manage, and accordingly, the patients’ emotions are likely to fluctuate. Repeated fluctuations in negative emotions can develop elaborated, entrenched, and sensitive suicidogenic cognitive structures, thereby increasing the risk for suicide behaviours." (Korean J Pain. 2021 Jan 1; 34(1): 94–105. Published online 2021 Jan 1.)

As said before, having a debilitating, chronic disease is also isolating to a degree. A great number of CRPS warriors shares experience similar to the following: At first people that you work with professionally, colleagues, even friends and family feels sorry for you. After a while they realise that it won't get better, and then inevitably they begin to move on without you, leaving you feeling abandoned and ostracized. The more acute your symptoms become, the more you become viewed as who you once used to be, as if it is not already hard enough for you to deal with the reality of that, living in a body that hate you, a body that is constantly at war with itself.

CRPS, usually starts in a limb, which manifests as extreme pain, swelling, limited range of motion, and changes the skin and bones. It may initially affect one limb and then spread throughout the body. Over a third of CRPS warriors report symptoms throughout their whole bodies. We all have our own way of describing what CRPS feels like, and yet the ugly truth is that according to the McGill pain index, CRPS pain ranks higher than childbirth, amputation, and cancer...more agonising than the amputation of a finger or toe without painkillers. It is an aching, burning, bone-crushing, debilitating pain, that can become all-consuming, not merely nagging. Things that should not cause pain under normal circumstances (for example, the light brush of fabric or wind) may cause a person who suffers from CRPS intense pain.

Having such excruciating pain day in and day out have an enormous effect on your emotions and your overall mental state, leading to emotional dysregulation, i.e. difficulty regulating one's emotions. You feel overwhelmed, have difficulties controlling impulsive behaviours, or have anger outbursts. These negative emotions can be difficult to cope with, leaving you feeling uncontrollable, hopeless and entrapped. These intense responses can cause trouble with relationships, work, school, and daily life, increasing the risk of suicide tenfold.

Pain intensity can have a major impact on suicidal ideation (thoughts of committing suicide) and impulsivity (the tendency to act without thinking, for example blurting something out, buy impulsively, crossing the street without looking etc).

CRPS affects many brain functions. A key change occurs with the sensitivity of the mechanisms that cause the symptoms. I have explained before how the pain is able to get worse when you just think about moving the body part, even if you don’t even move it an inch. Mirror therapy is one example of that, where your affected hand feels the pain intensifying, while you are touching your non-effected hand in the mirror. Your brain sees the affected hand as being in trouble, and act upon it.

It is the complexity of CRPS and the effect that it have on the brain that is able to bring mental strain to a disease that is neurological in essence with physical manifestation, and not psychological to begin with. Every person has a breaking point, and for a great deal of CRPS warriors that breaking point unfortunately ends in suicidal ideation, with many going as far as attempting suicide and even succeeding. We need to break this vicious circle. We cannot allow a nickname like Suicide Disease to authenticate itself by literally stealing life form people that did not even ask for this disease. With about 50% of CRPS warriors having suicidal thoughts, and 15% actually going through with it, we have a huge responsibility in breaking this curse.

The month of November might be CRPS Awareness month, but it is not only about educating people on the disease. It is also about saving lives. By showing love and understanding, by embracing people that struggle with CRPS, by allowing them to feel that they matter, that they are worth your attention, that they do not have to feel alone and isolated from society. We may just be able to save them from contemplating suicide as a final solution to the hell that they are living in. There is a saying under CRPS warriors, "If hell was a disease, it would be CRPS".

Suicide is real, and it is a threat to CRPS warriors, not because CRPS is a psychological condition, but because the impact of CRPS can lead to psychological conditions. Suicide is a major problem worldwide, and although suicide hotlines and organisations and support groups are important and fighting hard to combat the problem, we are yet to see a major turnaround in numbers and decrease in suicide attempts. There is no shame in asking for help when you feel that you cannot cope any more, yet many people do not feel comfortable or brave enough to ask others for help. This may be more a reflection on society's lack of unconditional love and support, rather than on the mental state of those who struggle with suicidal ideation. If these warriors do not feel safe enough to ask others for help, because they are afraid of the shame and stigma that the world associate with suicide, how can we expect the statistics to change. 

Whether you are a CRPS warrior like myself, or merely part of the greater population that does not battle CRPS, we need to renew our minds. We need to change the way we look at suicide. We need to break down all our preconceived ideas, and judgements and shaming. None of us can possibly know and understand what someone else is going through and what they experience to push them this far. It is easy to say that suicide is the coward's way out, but if you and I have not walked one step in that person's shoes, how can we be so judgemental about how and what we perceive that person's actions to be.

Suicide may not be the answer, but unfortunately for many it seems to be the only way out. If we know someone close to us that are really struggling, and we do not step in and support them, and listen to them and pray with them and encourage them, then we have failed them. The world need more heroes...ordinary people that care enough to stand up and say, "you are not alone, let me help you". Ordinary people that do not judge, that do not criticize, but rather say, "I may not know or understand what you are going through, but I will carry you and support you when you do not have the strength to carry on".

Suicide is no joke...it is also not the answer, although it might feel that way at times. All fighters get tired. All fighters lose their way sometimes. All fighters feel alone at times. But being a fighter is not only about the fight or whether you keep standing and whether you get knocked down. It is about how you get up when you are knocked down and how hard you hit back. It is about not quitting when the fight gets tough, but knowing when to lean on the support that others offer you. It is okay to be tired...it is not okay to give up.

Signs to look out for:

In South Africa there are 23 suicides per day with 230 serious attempts. There may be warning signs that you can look out for to help someone who is considering suicide. Some of these may include the following:

Talking about:

• Feeling unbearable pain
• Death or a recent fascination with death
• Feeling hopeless, worthless, or trapped
• Feeling guilt, shame, or anger
• Feeling like they are a burden to others

Changes in behavior or mood:

• Recent suicide attempt
• Increased alcohol or drug use
• Losing interest in personal appearance or hygiene
• Withdrawing from family, friends, or community
• Saying goodbye to friends and family
• Giving away prized possessions
• A recent episode of depression, emotional distress, and/or anxiety
• Changes in eating and/or sleeping patterns
• Becoming violent or being a victim of violence
• Expressing rage
• Recklessness

Other red flags are:

• Talking about immediate harm to oneself or others
• Planning to attempt suicide (for example, searching online for information about how to attempt suicide)
• Acting in such an erratic manner that you are concerned about their safety

Whenever you find yourself in a situation where you see these signs in someone else, please reach out to the Suicide hotline in your area and get them the professional help that they need. And should you ever find yourself in this situation, know that you are not alone, that there is help and that you do not have to go through these struggles alone. 

CRPS Awareness month

Thank you to everyone that helped spreading awareness during the month of November. One of my colleagues even went so far on Colour the world Orange Monday to educate the people in the minibus taxi, that she was travelling in, about CRPS as they were asking why she was wearing orange hearts.

Meanwhile I still have not heard back from the Medical Counsel, but they have asked for time until end December, so let's hope that there will be some good news. The Rhizotomy that I had earlier this year seem to have had the opposite effect of what was intended. So the hope was to stimulate and assist with restructuring the brain, but it seems that it just amplified everything. The electric shocks down my arm and into Chucky has started after the Rhizotomy and has intensified ever since. It feels like Chucky is being tased with very high voltage every time this happens. 

Sleep has once again become one of the worst activities, as the pain keeps amplifying. Apart from the excessive sweating, swelling, hair loss and colour change, my left elbow has started to mimic the same pain and burning symptoms as Chucky - constantly and without missing a beat - while the skin has become very sensitive to the touch. My elbow also reacts the same way with cold, as Chucky does. Initially I thought that it might be tennis elbow, or that I might have strained my left arm as I was trying to compensate for not being able to use my right arm as before. However, it is becoming more and more concerning that the alternative might be inevitable, i.e. that the CRPS might be spreading to my left arm as well.

There are studies and articles that suggest specific ways or patterns in which CRPS tend to spread, however with CRPS nothing is ever according to specific trends or patterns. I have learned to always expect the unexpected, and never to be surprised when something out of the ordinary or out of character happens. It might be so much easier if CRPS stuck to certain rules, but then it would not be called” Complex".  

That being said, I will see the specialist again early 2024 to do further tests to determine what is going on. So without formally labelling it, I will treat my arm under the assumption that it is either the CRPS that is spreading or the nerves in my neck causing havoc, misfiring in all directions.

I Won't back down

Lately the song, "I won't back down" by Tom Petty (1989) has been on my mind a lot. I think this is a song for every warrior out there. I have included the song below, however I have decided on the 2000 version of Johnny Cash, which has more of a country vibe to it than a rock vibe as it was initially intended. 

Johnny Cash suffered from Shy Drager Syndrome (SDS), a movement disorder which is often referred to as a Parkinson plus syndrome or Multiple System Atrophy (MSA). It has been said that he covered this song, in many ways, as a response to his personal ailments that he suffered prior to making this album (American III: Solitary Man). So, from one warrior to another, here is "I won't back down" as sung by Johnny Cash. Enjoy!

 

 

I Won't Back Down

Well, I won't back down

No I won't back down

You could stand me up at the gates of Hell

But I won't back down

No I'll stand my ground

Won't be turned around

And I'll keep this world from draggin' me down

Gonna stand my ground

And I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I will stand my ground

And I won't back down

Well, I know what's right

I got just one life

In a world that keeps on pushin' me around

But I'll stand my ground

And I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I will stand my ground (I won't back down)

And I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I won't back down

Hey baby

There ain't no easy way out (I won't back down)

Hey I will stand my ground (I won't back down)

And I won't back down (I won't back down)

No I won't back down

Source: Musixmatch

Songwriters: Tom Petty / Jeff Lynne

I Won't Back Down lyrics © Emi April Music Inc., Gone Gator Music, Notoriousjbpsongs

CRPS My Journey: Chapter 25 - Dear Chucky...

 

Dear Chucky

Hey Chucky, how are you? Starting this letter with "Dear Chucky" sounds more like a “Dear John” letter, or perhaps a letter to “Dear Abby”. Yet it cannot be farther from the truth.

Let me start off by saying that I am sorry. Sorry that I took you for granted. This was not my intention. In actual fact, I counted so much on you, that I may not always have had your best interest at heart. Sorry that I have allowed you to be in the state that you find yourself in today. You did not ask for this – neither of us did. You did not deserve this. All you ever wanted to be, was part of a family, part of the rest of the body. Chucky is a name that I gave you because you revolted against me…or so it felt. It took me a while to realize that you were also only trying to make sense of what was happening to you, just as I was. It could not have been easy for you to wake up one morning with excruciating and constant pain and burning, feeling totally cut off from the rest of the body – cut off from your control center, the brain. You must have felt so alone, so isolated, so angry, so rejected, sending out signals without receiving confirmation back that everything is safe. You were like Onoda, the man that hid in the jungle for 30 years not realizing that the war was over, only to return in 1974 and be told that the war has ended 29 years earlier. I can just imagine…as that was how I felt. I felt like the father in the parable of the lost son (Luke 15:11-32). It felt like you have turned your back on me, deserted me, hated me. And it made me sad, and angry, and frustrated.

I remember times when you were so angry…angry at me, angry at the rest of my body, angry at the world – hurting yourself, hurting the rest of the body, rebelling in the worst possible way. And that just fueled my own anger, to a point where I wanted to cut you off from my life…literally. It felt at times that it would be better to live without you, than to go through this pain every day. I mean, you already felt disassociated from me, as if you were far away, cut off from the rest of my body. It felt like you had built this whole personality for yourself, with one goal…to make my life miserable and to punish me for allowing you to become this way. I tried talking to you with empathy, I tried yelling, cursing, swearing, ignoring you, but it all felt like pouring fuel on the fire.

It was only after having allowed myself to mourn, with the realization that I had to forgive myself and accept my new reality, that we were able to come to a mutual understanding – declared a ceasefire of sorts, that we would not kill each other, but rather look for common ground and a way to co-exist in a symbiotic relationship – knowing that things would never be the same again. This did not take away the fear and trust issues, but it did help us to start working together towards a common goal – that was, getting a handle on what was happening to us, and learning to cope with, and manage what was happening to us. We had to realize, that we were both affected by this disease, both trapped in a vicious and never-ending nightmare, entangled in our own humanity.

Oh how I took you for granted when life was so much different. Youth has a tendency to make you act as if you are invincible. “Protective clothing are for those that are irresponsible or clumsy, and why walk all the way back to the workshop to get the right and proper tool for the job, when you can use your hand to hit that beam into place.” Have I only realized that I was the irresponsible one, teaching others to wear the proper protective gear, telling them to do like I say, and not like I do. And yes, although the primary cause of this disease started with years of neck pain, you were the unfortunate one to suffer as a result, having undergone an operation to rectify a secondary issue that was caused by trauma, a trigger finger, from not protecting you enough as I should have. Unfortunately regret and stubbornness are often twins, and arrogance their fuel. Have I only listen to myself, have I only taken greater care…but regret is always too late.

Yet through all of this, I have grown (we both have). I have learned to accept life for what it is and treasure every moment of it. I have learned to build safe environments - not risk free, but safe and calculated - rather than closed off defenses. I have learned that when life gives you lemons…sometimes you make lemonade, sometimes you just eat the lemon, or you squeeze it over your food or bake a cake. And at other times you through the lemon away…or you throw someone with the lemons. Life does not come with a step by step handbook, and every answer does not fit every question, nor does every solution fit every problem. Sometimes none fit, and sometimes, when you are lucky, some or even all fit. What makes the different is your approach and how you decide to deal with the issue at that exact moment in time. We cannot plan our whole lives down to the tee and have smooth sailings without storms and sharp rocks along the way.

You have taught me that, when life is at its hardest and you are at your weakest, your survival strength is at its strongest. Pain then becomes a beacon, a compass that guides you safely through the storm, even though it may not feel that way in the moment. Can you just imagine if we were making fire, and your pain did not flare up, but instead went dead silent…it would be catastrophic. I might try to get you back for all the pain and issues that you have caused me, as you would not react on what was happening. 

Nobody ever said that pain was a bad thing. It is a necessary part of life. Unfortunately, our interpretation of danger and pain got scrambled along the way. So that which is supposed to protect us, started to torment us, and our ability to differentiate between what is real pain and what is not, became totally messed up. But we did not let that get us down. It may not always be a matter of us being strong necessarily, but at times rather us surviving at all cost because we do not have the luxury of giving up. We get tired…we rest. But when we get fed-up, we cannot give up. We give up…we die. We have learned to persevere more than ever, and we are challenged every day to put our differences aside and find common ground. You may well be my Robin to my Batman, but that does not make you less important or less crucial to my being.

The meds may take away my feelings and emotions, but it does not keep me from sheltering and protecting you. And perhaps I have learned this too late in life…but at least I have learned it and try my utmost to shield you. Thanks for not giving up on me, even in those dark times when you felt so far away. Thanks for letting me know that you are still there, even in those times when the pain and burning became unbearable. Thanks for trying again and again and again, especially in those times when you rebelled and just wanted to throw everything around. Thank you for refocusing my attention to where it mattered most. Together we can overcome anything.

Your greatest admirer

The eye of the Storm

The last couple of weeks I have had some horrible flare-ups. Chucky has not been easy to deal with, and together with the constant lightning strikes from my neck down my arm, causing the same effect as when I hit my funny bone months ago, it has been quite agonizing – unbearable at times. Having not been on my meds for the past two months also did not help, as I could feel how the pain signals were becoming closer together again…and the irritability started brewing under the surface again. Being in more pain, caused me to become more tired. And being more tired, caused me to have more pain as I needed to put in more effort to count on my coping skills. To pour fuel on the fire, I over-exerted my hand the last couple of weeks by finishing projects hands on in very limited periods of time - something that I used to enjoy. I used to enjoy working under pressure towards deadlines. With Chucky, these bars are being raised. It is like taking part in a swimming competition, with weights on your arms and feet. Yes, you will still finish the race, with some resistance...and your body will feel it afterwards.

The one medication that I do however still use (Dyna Sertraline) helps me to subdue the manifestation of my irritability. In layman’s terms…it helps me not to act on my irritability and puts me in an almost limbo-like state. Things that would have infuriated me two years ago is now just “ehh”. Yes, I acknowledge that I am dissatisfied with the situation, but I do not get emotionally involved. Somewhat similar to when I was on Cymgen, but also totally different. I still feel disassociated, but instead of just not caring or giving a damn, I know and acknowledge how and what I am supposed to feel, but on a more rational level if that makes sense. For example, I would acknowledge that I am displeased and I would tell myself that I want to get angry, and should be angry…and even mentally go through all the phases of being angry…without becoming emotionally angry. Quite a weird thing to explain.

When I was on Cymgen especially I had this whole out-of-body experience where I felt that my body was present in the group, but my inner being was detached and I was looking from outside inward, totally detached without being part of the group. This however has made way for a new type of experience. One where I feel trapped inside my body, instead of outside my body. So I still experience some disassociation and feel overwhelmed in social situations, but with the difference being, that instead of feeling detached from my body and looking down or from the outside inward to what’s happening, I now feel trapped in a bubble within myself. No other way to really describe this. It is like getting my body and spirit or soul reunited, only to have my spirit/soul pinned down in a cage. But I am dealing with it. As said before…the “Lucky Packet” disease…never know what you gonna get next.

But why am I not on the medication that is supposed to help my cope by broadening the gaps between the pain signals? Because I am still waiting on the Medical Council to make a decision. My battle with the medical aid has gone as far as the Council of Medical Schemes, who are currently investigating the fund and my case. Their ETA for giving me an outcome, is end of December on the latest. So now we wait. Should we not succeed, I will explore other avenues, but I will continue fighting. This unfortunately means that with our savings on our fund only kicking in again in January, any and all medication comes out of own pocket, which is just not viable at the moment. But I haven’t lost faith yet, and this means I just need to focus more on my coping skills.

But going through this did make me realize that we have not spoken on the connection between CRPS and Depression yet – perhaps touched on it, but not in detail as such.  

CRPS & Depression

“CRPS is a debilitating chronic pain disorder that can negatively impact physical, mental, and social health. Depression, anxiety, trauma, insomnia, and substance use disorders might occur in affected patients. The etiology of CRPS appears to be multifactorial; therefore, effective treatment should be multidisciplinary.”

Although CRPS is not a mental health condition, but, neurological condition. CRPS can cause or worsen anxiety, depression and stress. It can sometimes even lead to post-traumatic stress disorder (PTSD), especially when a limb is or feel cut off from the rest of your body – whether physically or mentally. The reality is that it is these disassociated feelings and anxiety, trauma, PTSD etc., that often lead to suicide and/or thoughts of suicide, which lends the name “Suicide Disease” to CRPS. So although depression may not be the cause of CRPS, it may very well be a result of CRPS.

In an article that was published in The Journal of Pain (https://doi.org/10.1016/j.jpain.2017.02.277), a study was done on the relation between depression and CRPS and the question was asked, “Could depression be a causative factor in the development of CRPS types I?” The outcome of the study noted the following: “Studies have shown that patients with depression have an increased rate of having chronic pain, including CRPS. These patients also have poorer outcomes of recovery.” So although depression as the “norm” may not cause CRPS, it does seem possible in some cases, not necessarily causing CRPS 1, but heightening the possibility of developing CRPS 1. Although this is an isolated study, it does make sense if you take in consideration that CRPS 1 is a neurological disorder. So if you are prone to develop CRPS 1 at some point in your life, for whatever reason, suffering from depression beforehand may speed up the process of developing CRPS 1. Depression puts your body under pressure, it lowers your natural defences, which heightens your body’s vulnerability.

Imagine having so much pain, knowing that NO medication on this planet can 1. Heal the condition, 2. Take away the pain and 3. Fix what was broken – and having to live like this for the rest of your life, being limited to what you can and cannot do and when you can and cannot do it. Imagine having so much pain that it affects your energy levels, your sleep patterns, your concentration, your social life, your sex life…the list goes on. For most diseases there are medication that can offer some sort of relief, but what you have is not like any other disease and this disease does not play well with medication. As a matter of fact, while no medication helps for the pain, some medicine even worsens the pain. Now imagine having to face every day, with the insomnia, burning, swelling, sweating and everything else that comes along, then you can understand how easily one can fall into a state of depression.

So when someone with CRPS focus on things like meditation, coping skills, desensitizing techniques etc., it is not only to get a handle on the pain, but also to combat depression. CRPS can never be treated in a protected bubble. Treatment will and must at all times be holistic in its essence. CRPS 1 testifies to this, as this is a neurological disease with physical manifestation, but without physical origin. In other words, there is no nerve damage, unlike CRPS 2. Yet it is not a mental disorder, which makes it even more complicated or complex.

Some of the medication that CRPS warriors are put on are medications that they use to treat depression, due to certain properties that these meds have to assist the body to deal with the pain and to lift the spirits. Yes, some of these medications numb the emotions, but it becomes a necessary part of dealing with the pain. Emotional anger and pain fuel each other. So when you are in so much pain, you become angry, and when you become angry, it worsens the pain as you become more aware of the pain and the helplessness of the situation. Meds like Epileptin, Dynasertin, Cymgen etc. sort of breaks this vicious cycle by (among other things) taking the emotions out of the equation. So while phycologists and psychiatrists do not like the idea of your emotions being cut off or blunted out, for someone that struggles with constant pain, it gives them a means of dealing with the pain, without having to worry about the emotional baggage of the disease. Unfortunately, as with everything else, it does have its pros and cons, something that we have talked about before.

The following was posted in the National Library of Medicine (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8970239/), “There is conflicting evidence for a relationship between psychological factors and psychiatric symptoms and CRPS. When symptoms are present, it is uncertain whether they predispose to, predate, or result from CRPS. A retrospective study of 64 patients with CRPS reported a higher prevalence of mental illness compared to individuals with other chronic pain; the most common conditions were adjustment disorder, depression, alcohol or tobacco abuse, and personality disorder.12 A forensic evaluation of 55 patients with CRPS noted depression in 60 percent, panic attacks in 20 percent, alcohol or other substance abuse in 18 percent, and somatoform disorder symptoms in 42 percent.13 A prospective study of 152 patients with CRPS detected a higher prevalence of post-traumatic stress disorder (PTSD), compared to individuals with other chronic pain and healthy individuals.14 Patients with lower baseline anxiety, fear of pain, and perceived disability have better prognoses, compared to patients with higher levels, because the latter group might minimally use the affected limb, paradoxically leading to increased pain and disability.15 Catastrophic thinking might predispose individuals to CRPS due to a heightened perception of pain.8 Although no studies assessed the prevalence of insomnia, this is likely present due to the strong bidirectional relationship between chronic pain and insomnia.16 Furthermore, sleep disturbance can exacerbate pain (especially the following day) or predispose individuals to develop chronic pain.16”

Thus, with CRPS pain being one of the highest pain diseases, it seem that the possibility of developing depression is much higher than with other diseases. So the verdict is still out on whether or not depression may or may not have a contributing factor on developing CRPS 1. Again shining the spotlight on the reason why this disease is called “Complex Regional Pain Syndrome”. I do think however that what we can take away from these studies is that there definitely is some kind of correlation between CRPS and Depression, although it may not affect everyone, and/or affect everyone in the same way. Living with CRPS definitely make you prone to developing depression, but it also seems that in certain cases, that living with depression may make you prone to developing something like CRPS. So can I really prevent this? It is hard to tell. Can I treat this? Yes, I do think so. Perhaps not the CRPS, but very well the depression. But it is not as simple as just popping a pill unfortunately (although medication is a vital part of treating/preventing depression). It requires a strong foundation and support system (ironically, often one of the first things to go when people are diagnosed with CRPS), a willing and open mind set (that may often be affected by the depression itself), coping skills that not only help you to manage CRPS, but also help you to manage and treat depression…and lots of prayer founded in a solid foundation of Faith. 

One thing is for certain, there will never be right conditions to fight CRPS, whether it is linked with depression or not, or perhaps even other health issues. There will always be the next fight and the next...different, bigger, more challenging. Todays victory just mean that we need to fight so much harder tomorrow. Following the Springboks win over the All Blacks in the 2023 World Cup Final, Siya Kolisi had the following to say, which we could all learn from:

"Coach Rassie [Erasmus] said great things are never achieved in ideal conditions, and this wasn't ideal conditions for us as a group. Playing the home team in their home country was one of the hardest things to do and obviously when we played the last game against England, which was tight, we had to fight and today as well, no different." (Siya Kolisi: Springbok Captain RWC 2023)

RARE Disease ambassador

I have been blessed with the wonderful opportunity to become part of Rare Disease South Africa as a Patient Voices Ambassador for CRPS 1. I have the opportunity to attend the RARE X 2024 Conference in Sandton in February 2024, but unfortunately won’t be able to attend due to the cost of attending the conference, travelling, accommodation etc. Let’s hope that in the future they will path a way for attendees to be able to take part and do presentations via other communication platforms like Zoom, Skype etc., or perhaps they will schedule a conference down in Cape Town. Who knows.

Colour the world orange

November is that time of the year again where the focus falls on creating awareness about CRPS, with the “Colour the World Orange” day falling on the 1^st Monday of November (6 November 2023). People are asked to wear orange in support of people living with CRPS.

What does Colour the world orange day mean?

On Nov. 6, 2023, members of the CRPS/RSD. community will celebrate the 10th-annual Color The World Orange day to spread awareness of this poorly understood pain disorder.

Read more on https://www.colortheworldorange.com to see how you can become involved in creating awareness.

On 25 October 2019 Adrie Barnard wrote the following article for Huizemark, a real estate company in South Africa (https://www.huizemark.com/news/color-the-world-orangetm-day):

“Colour the World OrangeTM Day

The first Monday in November is dedicated to bringing awareness to Complex Regional Pain Syndrome with Colour the World Orange Day which was founded in 2014. Reflex Sympathetic Dystrophy (RSD), describes an array of painful conditions that are characterized by a continuing (spontaneous and/or evoked) regional pain that is seemingly disproportionate in time or degree to the usual course of any known trauma or other lesions. Usually starting in a limb, it manifests as extreme pain, swelling, limited range of motion, and changes to the skin and bones. It may initially affect one limb and then spread throughout the body. The pain of CRPS is continuous but varies in severity.

The sixth-annual Color The World Orange™ Day for CRPS/RSD on 4 November 2019 aims to create awareness of this rare disease and hopefully a better understanding of what it is about. As a real estate company with a passion for the colour orange we will participate in getting the voices heard of those affected.

Visit the CTWO Facebook Page and website for ideas on ways to Colour the World Orange. The easiest way to get involved is to wear orange on this day and post orange pictures (orange food, orange drinks, orange flowers, orange clothes) to social media with the hashtag: #CRPSORANGEDAY™

At the last count, 130 buildings and bridges around the globe will be lit orange on 4 November 2019 for the sixth-annual Color The World Orange™ CRPS/RSD Awareness - from Las Vegas, Pennsylvania, Texas, New York and many more cities in the United States to Perth, Brisbane, Logan, Darwin in Australia; from England to Germany!

Let's do our share in South Africa and colour the World Orange!

Author: Adrie Barnard”

It has been four years since this article was written, and we have yet to experience South Africa coming forward in creating greater awareness for those living with CRPS - unlike other countries where towns and cities cloak themselves in orange in order to help create awareness for CRPS. Let’s hope that we will be able to do the same in our cities in the near future.

CRPS My Journey: Chapter 24 - Pacing & Growing!

Someone reminded me not too long ago of the 1999 movie “Idle Hands”, where the protagonist is a guy named Anton. In the movie his right hand goes on a killing spree while he is asleep. He eventually realises that his hand is possessed, and after killing his friends (who becomes Zombies), as well as a couple of police officers, he decides to cut off his hand…which turns out to be a bad idea, as his hand is still possessed and now continues its killing spree while being detached from Anton.

Thinking back on this film, it does not seem too far off from what I have often experienced with my right hand. Although not possessed (and fortunately not having killed anyone yet), this film gives somewhat of an insight to what happens when your hand gets a personality and a life of its own (although this was not the point of the movie).

The power of Intimate Connections

So the other night, we were watching tv, when out of the blue Teresa said, ”I am glad that Chucky still listens to me”. Teresa could see that I was totally perplexed, so she explained. The evening before, after the kids went to bed, we were on the couch watching tv, when I drifted off to sleep. I haven’t slept much in the last couple of weeks as I was struggling with the flu, which worsened my pain as well, so as the exhaustion became too much, I was out cold, even if it was just for a few hours. And then it happened. 

While I was asleep, my hand (and only my hand) started trembling and shaking, and a weird bulge or bump apparently appeared on top of my hand. So Teresa put her hand on Buddy to comfort him...and he settled down. As for myself, I was not aware of any of this, so when she mentioned this the next evening, you can understand why I seemed so perplexed. Usually when Buddy becomes irritated or shaking, it has to do with the pain and irritation. And when he becomes like this, he cannot bare touching anything, nor does he want or like to be touched in that state. His sensitivity goes in overdrive. However, that evening, without me knowing what was happening, he started acting up and then allowed Teresa to calm him down. Almost like a feral cat that got his foot stuck in a snare, that allows someone to help him.

So yes, I know, and have known and seen for the last two years, what and how Buddy can behave when he goes in Chucky-mode. This, however, was a first for me - to experience how, even when I am asleep, he is living his own life – separate from me – and responding to someone else - independent from me. Much like in the movie “Idle hands”. It reminded me again of the cruelty of CRPS, but also of the strength and deliverance of unique bonds in relationships. How - much in the same way that a loved one can talk the person, with whom they connect, off a ledge - that bond can create security and acceptance and bring calmness to even just part of the body of the person that they connect with.

Yes, I know it probably have to do with your subconscious mind and the power that it holds, but isn’t it amazing in any way how the body reacts in various situations. If I were awake while this happened, I would have never been able to allow her to touch my hand in that state - guaranteed. What is also interesting is that the bulge on my hand was gone by the time I woke up. I would not even have known about it, or about what had happened, was it not for Teresa telling me and asking to see my hand. Your subconscious mind is a powerful force to be reckoned with. It makes up around 95% of your brain power and handles everything your body needs to function properly, from eating and breathing to digesting and making memories. It's a very strange being when you think about it, and therefore not farfetched at all to refer to a body part as having its own personality.

Each and every day is a learning curve. Some days you discover things about yourself that you either never knew, or have forgotten over the years. At other times you discover weird and interesting things that you wouldn’t have known if somebody did not point it out to you – like with what happened above.

Keep on learning...Keep on growing

In the past two years I have learned more about a disease (that I never knew existed), and the workings of the human mind and body, than many people learn in a lifetime. And yet, I still have so much to learn and discover.

Henry Ford once said: “Anyone who stops learning is old, whether at twenty or eighty. Anyone who keeps learning stays young. The greatest thing in life is to keep your mind young.”

I was talking to a good friend the other day, and we were talking about friends that we went to school with, that we have seen sporadically over the past couple of months. What was interesting, and at times very sad, was how they changed over the years. We all had our share of hard times, but what is noticeable, is how some of them looked as if they were 10-15 years older than us, and yet we are the same age. You could see the hardship and struggles on their faces, in some cases the hopelessness and procrastination – as if they have stopped growing and learning. Then my friend reaffirmed something that I have spoken about a lot. The way that you look at your problems and the attitude that you approach it with, makes a big difference. Unfortunately, not everyone has the support system in place to help them achieve greatness and keep on learning…but we all had equal potential according to what we were given and what we were able to handle. Some even reached greater heights than what people expected of them, just because of their mind-set and how they approached life…especially through the hard times.

Never stop learning. Never stop discovering. Never stop allowing yourself to be amazed…even in the worst of times

Spoon Theory

In the previous chapter I referred to Spoon Therapy, or rather the Spoon Theory. So let’s have a look at what it is, and how it can be helpful to those who suffer from chronic pain and/or fatigue.

Definition of Spoon Therapy:

Dr Tilahun from Cleveland Clinic defines it as follow: “The spoon theory is a self-pacing strategy that emphasizes the need for chronic pain patients to work to a certain quota. Patients have to be economical in how they spread the use of their spoons in their daily activity.” 

In short, the spoon theory sets out to help you to pace yourself responsibly when using your strength and energy. It is not a wonder cure, and although it does have its limitations, it enables you to schedule your day in a way that you are able to manage your daily tasks. It is a way for people who live with chronic pain to express how health issues impact their ability to complete everyday tasks and activities.

Origin

In 2003, writer Christine Miserandino, tried to explain to a friend how having lupus impacts her ability to perform daily tasks. As a way to demonstrate what she experiences on a daily basis, and how it differs from someone that do not have chronic pain, she created an analogy about having a limited number of daily “spoons.” These spoons, she explained, refers to the different tasks that she has to do during the day, and the amount of energy that it takes to do each of those tasks (measured by spoons). She explained it as follow. 

She gave 12 spoons to her friend, and asked her to describe an average day. As her friend listed activities, Miserandino took spoons from her. She explained that the spoons represented the amount of energy that each activity required. The more spoons her friend used, the more the friend had to ration those that she had left. By 7PM, her friend was out of spoons. The reality was that she did not manage to do everything that she set out to do for the day, had she had unlimited spoons. Miserandino went on to explain that she had to make such choices and sacrifices every single day because of her chronic illness. This analogy helped her friend to better understand how it felt to live with something like Lupus.

The idea behind the Spoon Theory:

The Spoon Theory became a way to illustrate the energy limitations that can result from living with a chronic illness. By using spoons to measure the amount of energy you have for the day, it helps you to visualize your total daily energy. It helps you to pace yourself and prioritise tasks and strategies.

One of the major issues with Chronic pain, is the chronic fatigue that comes with it. You can wake up the one morning full of energy and feeling capable of moving mountains, while the next morning you may wake up totally exhausted, or with brain fog or a pain flare-up that makes even the smallest of tasks difficult, while demanding extreme effort.

The idea is to determine how many spoons of energy every task requires so that you can visualize how many spoons of energy you may need to get through your day.

How does it work?

Let’s say your typical day looks as follow: You get up, brush your teeth, shower, get dressed, make and eat breakfast, go to work, make and eat lunch, more work, go home and make and eat supper, shower, watch some tv, go to bed.

For each of those tasks you will assign a number of spoons according to the amount of energy that you need to complete that task. Obviously there will also be other tasks that need to be slotted in throughout your day like going to the doctor or doing house work, helping kids with their homework or being intimate with your spouse, or visit friends or family etc. To all of these things you also assign an amount of spoons according to the amount of energy it takes.

You can break it down even further by assigning spoons to things like communication, reading, writing, drawing, hiking, swimming, etc. as all of these things uses energy. So for example you might assign it as follow:

Taking medications:                                         one spoon

Getting dressed:                                               one spoon

Watching TV:                                                   one spoon

Taking a shower:                                              two spoons

Reading or studying:                                        two spoons

Doing light housework:                                    three spoons

Making and eating a meal:                                three spoons

Working:                                                            four spoons

Intimacy:                                                            three spoons

Communication:                                                 two spoons

Hiking:                                                                five spoons

Visiting a friend or relative:                                four spoons

Going to a healthcare provider appointment:     four spoons

And so on…

The idea is that by determining how many spoons of energy you have for the day, you can plan and prioritize your day accordingly, so that you do not run out of energy. In theory this implies that should you have 20 spoons for the day, but only need 10 spoons for the day, that you can transfer the remaining 10 spoons to the next day – which in practise is not so simple however. What is more likely, is that you can use the remaining spoons of energy to rest and recover, or to attend to other tasks that you might not have planned for, but now have some energy to do...today.

The Spoon Theory is not a fallible theory, as we will look at in a minute, but it is a mental aid that do work for some people. It also creates a platform where it can assist your communication towards others, for instance, once people understand the theory behind spoon therapy, you can describe your current state as follow (without having to explain yourself):

“I don’t have enough spoons to do that today.”

“I pushed too hard and ran out of spoons.”

“I have this already scheduled. So I won’t have enough spoons to do that.”

“Can you help me with this? It will save me some spoons so that I can enjoy doing that with you more.”

“I have to cancel our plans for today. I used too many spoons yesterday, so I don't have enough for today.”

Although the Spoon Theory can have a major influence on mental issues like stress, depression, anxiety and autism, the same can be said from the other way around. Stress, depression, anxiety and autism can have a major effect on the Spoon Theory. For instance:

Stress: A task performed under stressful circumstances may require more spoons than the same task completed in a calm and supportive environment.

Depression: Someone with major depression may wake feeling so weighed down that they don’t have enough spoons to shower or eat.

Anxiety: A racing heart rate or difficulty breathing may quickly exhaust someone’s body and leave them with few spoons.

Autism: Navigating the sensory overload of a grocery store or busy school setting may require the majority of a person’s spoons for that day.

Are there any shortcomings to spoon theory?

Yes, as said in the beginning, it is not without its shortcomings.

1. Spoon theory assumes that every task requires a set amount of spoons. The reality is that on a low-pain day you may need one spoon to make breakfast, but on a high-pain day you might need three spoons to do the same task. I have experienced this often with something as simple as mixing milk into porridge. The one day it is easier and takes a few seconds, the next day the pain becomes too much and that same action takes minutes to complete while I often have to stop in order to manage the pain. This may make it challenging to visualize future task prioritization.
2. Spoon theory doesn't take into account unforeseen factors that deplete energy. On a low-pain day you may wake up full of energy. You get in your car a drive off to work and load shedding hits, causing you to sit in a traffic jam, or weather suddenly change from very cold weather to very hot or windy weather, or unforeseen and unexpected things happen like a death in the family, your car breaking down, a rude client screaming at you. And suddenly that bounds of energy are wiped out. Pain and fatigue may flare up with no identifiable cause too. One of the things that I have found that depletes my energy much faster is cold weather, or just walking past a freezer even, as it elevates my pain level, which immediately draws more energy from the rest of my body in order to try and combat the pain and protect my hand. This lack of control contradicts the idea that spoon rationing is a reliable form of self-pacing.
3. Spoon theory mathematics imply that you can save spoons for future events. As mentioned before, you may have 20 spoons for the day, and only use 10 spoons. This may imply that you can transfer the remaining 10 spoons to the next day. Unfortunately, Chronic health conditions are not always predictable, which means that you might not even have 10 spoons tomorrow, let alone the 10 extra spoons from today that you in theory want to transfer. I might have 10 spoons left, but then I bump or cut my hand by accident and immediately my energy is drained. Which in reality means (from experience) that tomorrow I will already start with a loss or a shortage in spoons.

So how do you manage your daily spoons?

“Studies show that with the right interventions chronic pain patients can improve their tolerance of the pain and restore their normal function,” Dr. Tilahun.

The following is applicable to all chronic illnesses. In certain cases, like CRPS, the sooner one start with this, the better the outcome. This does not provide a cure, but enables you to manage your pain better, thus managing your spoons better:

1. Physical therapy: Seeing a physical therapist for pain management can teach you exercises and other strategies to strengthen your body and lessen your pain.
2. Medication: Your doctor may prescribe medications to treat your chronic pain, as well as to address the depression and anxiety that often accompany it.
3. Psychotherapy: Research shows that therapy can help people with chronic pain learn to better cope with the ways their condition impacts their life.
4. Mindfulness meditation. This kind of psychological intervention can help patients develop an accepting attitude toward their pain
5. Complementary medicine: Combining conventional treatment with alternative therapies like acupuncture, massage and chiropractic care may alleviate some of your pain.
6. Pain management programs: These programs can help you learn coping mechanisms by incorporating many of the strategies listed above.

“Based on the cause and nature of your pain, a comprehensive interdisciplinary approach — one that combines medication, physical therapy and counselling — can help most patients to rehabilitate and restore their function. With the right interventions and therapies, their quality of life can be restored despite the pain.” (taken from an article published by the Cleveland Clinic)

When I look at these 6 points, I can see the members of my medical team in each of these areas, focussing on their own specialised fields, helping me to deal with CRPS. 

The Spoon Theory might not be for everyone, but it might be just what some need. It is not a cure, nor is it meant to be. It is a way for people that suffer from chronic illnesses to try and understand and manage their pain and fatigue. Doing something is always better than doing nothing. However, balance, and an open mind, is key.