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