CRPS My Journey: Chapter 29 - You may delay, but time will not. — Benjamin Franklin

“Time is what we want most but what we use worst.” — William Penn

It has been a while since my last post and I thought that I would have more time to sit down with the next chapter, but alas. Strange how time passes by so quickly. How often do we say, "Don't worry, we've got time", just to wake up one morning to suddenly realize that time has run out? Procrastination - the act of putting things off till the last minute. We all do it. "I will start losing weight, starting next week". "I will start with the project on Wednesday". "I will spend more time with my family when I get home". Do any of these sound familiar?

Dawson Trotman once said, "The greatest amount of wasted time is the time not getting started." We often have good intentions and we spend a lot of time planning (which is not a bad thing per se), but often this become so time consuming that we fail to start. And when we eventually do start, we find that time either is running out, or has already run out.

Lately I have tried to focus on finishing tasks that I have set aside due to pain or time restraints, finances or just pure procrastination. Whatever the reason(s) were, regardless of the validity of the reason, I often found myself at the tail end of time. And with my health this was no exception.

It has been almost four years now since I started seeing Dr King at the Spine Centre. Initially the plan was to monitor the degeneration of my vertebrae over a three-year period. Last year as we reached the third year of this three-year period. We agreed that, with my condition seemingly not progressing as rapidly as we feared might happen, that we had beaten the odds. This would mean no operation, which was awesome news, as this was exactly what we tried to prevent as far as possible, partly because of all the risks that came with an operation such as this, but also (perhaps even the greater reason behind this) because we wanted to avoid the possibility of the CRPS spreading to my neck.

Well I saw Dr King earlier this year for a follow-up, and he insisted that we do a MRI, just to make sure that we do not miss anything, as the last MRI was four years ago. He still did not want to operate, and told me that the only way that he would decide to operate, is when my spinal cord and my spinal fluid is being compromised.

A couple of weeks ago Teresa and I both went to see him for the results, and things did not look good. He sat us down and started asking if I had any symptoms, apart from the normal pain, to which I replied no. He explained that sometimes MRI's can be over sensitive, but looking at mine, and zooming in on the problematic vertebrae, he was a bit perplexed. He showed us where c4/5 is pinching the spinal cord creating a barrier whereby little fluid is allowed to pass by. This meant a compromised spinal cord - which we feared.

He asked me to stand up, walk from one side of the room and back, do the heel to toe test, turn around quickly among some of the tests. He had me press up and down with my hands, lie on the bed and do more reflex tests. And this is what baffled him, as according to my scan I should have symptoms like struggling with buttons, falling over, being off balance. In fact, I should have been in a wheelchair. Yet I passed all the physical tests. Yes, Chucky drops stuff from time to time, but that is to be expected. But for all the other tests, I seemed to be healthy.

So I asked, "Doc, is this good news or bad news?", to which he replied. "This is good news, weird and mind boggling, but actually great news. This means that the symptoms can be prevented". And then he explained it like this:

"First of all, I am still hesitant to operate, as we know that the possibility is there that the CRPS can spread to your neck, which we want to prevent at all cost. In more than 700 of these ops that I have done, I never had a patient present with CRPS in this area, BUT unfortunately it is documented, so the risk is still there. Especially in your case with the degree to which you developed CRPS.

However, unfortunately we have gone past the stage now of waiting and looking at an operation as a possibility, to looking at an operation as a necessity. Because of the deteriorating state of the spine, and while you do not present with symptoms, we have to operate to prevent you from getting those symptoms. Should we leave this for say next year, and you develop any of these symptoms, we will still be able to repair the spine, but we won't be able to reverse the symptoms. So if you were to land in a wheelchair, you would then stay in a wheelchair, even though a fusion was done. Therefor we need to act now.

Luckily it looks like we only need to do C4/5 for now, as (although the others do not look great) there is still enough space around the other vertebrae. Also by doing only one fusion, we will hopefully minimise the risk of CRPS flare-up or spread. Obviously with the operation there are other risks like losing arm and/or bodily functions, losing your voice or becoming raspy (usually temporary), secondary infections even bleeding out (worst case scenario should something go wrong), but we will try to minimize all of these as much as possible. Any operation has its risks.

This is a routine operation. We cut on the front of the neck, next to the vocal cords and next to the spine. We take out the cushion between C4/5 and replace it with a spacer, before we fuse the two vertebrae with a metal plate. It will take about a year for the bone to fuse, but you should lose very little movement, and the healing process should be fairly "quick "(in relation to other ops). You will go in the Friday morning, we keep you sedated in ICU for the rest of the day, the next day the physio will visit you. If she is happy that there are no side effects, you will be moved to a general room. I will come by on Sunday, and if you feel okay you will be discharged. A week or two at home and you should be able to return to work. After that I will see you on ten weeks, then three months, six months and then again one year to make sure that there are no complications and that the healing process is going as it should."

Somehow, I thought, hoped that we would still have time. The one thing that probably helped to postpone it this far and that helped to keep the symptoms at bay, apart from the Lord's grace, was my battle with CRPS. Fighting to manage Chucky probably occupied my brain so much that my brain did not notice what was happening with my spine. Well this is not a medical fact, so don't quote me on that. However, I would like to believe that this was the case, as it would somehow give purpose to this horrendous disease called CRPS, aka Suicide Disease - even if it was just to explain in my own mind what I was dealing with.

My op is scheduled for Friday 2 August 2024. How do I feel about it? Everybody asks me that, and I know what people would expect me to answer, but I don't know. Perhaps indifferent or detached? Perhaps it hasn't sunk in yet, or perhaps I have already dealt with this as I had prepared myself over the last three years for the inevitable. Either way, this is something that I cannot shy away from any more. Time, which we thought was on our side, finally started to catch up to me. And so many of the things that I have wanted to do, that I have planned to do, is still unfinished. Do I have regrets? Of course I do. The problem however with regret (and I have said this before), is that regret always comes too late. It does not necessarily mean that you won't have time to fix things, but you will never be able to get back the time and opportunities you have wasted.

Life is short and every moment counts. Don't let a moment pass you by to let someone know that you love them, that you care for them. Don't waste so much time on not getting started. There's a famous quote by Ray Bradbury: “Sometimes you've got to jump off a cliff and build your wings on the way down.” Take chances and never take anything for granted.

In the immortal words of Mark Twain:

"Life is short, break the rules. Forgive quickly, kiss slowly. Love truly. Laugh uncontrollably and never regret anything that makes you smile."

Catch you on the flip side!

 

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.

CRPS My Journey: Chapter 23 - From Achilles Heel to Vitamin Supplements: Building strength!

Okay, so my break was a bit shorter than I anticipated, but that is the thing. As soon as I think this is going to be my last chapter, people contact me to tell me how much a certain chapter meant to them, and then asks me to continue as it gives a voice not only to myself, but also to them, as they are going through the same struggles as myself. Suddenly they do not feel alone. What they have struggled to express or get other people to understand - suddenly they found someone that knows and understands something about what they experience. I am so blessed to be able to use what is happening to me, to encourage others that are going through the same struggles, and to advocate CRPS to those who do not know and do not understand. Thank you to all my readers for supporting me in this way, and giving me the strength and the platform to be a voice for CRPS warriors.

Achilles heel

The metaphor Achilles heel often refer to "a weakness in spite of overall strength, which can lead to downfall". According to Greek mythology, Achilles was a demi-god who was instrumental in the Trojan war. Because of his enormous strength and invulnerability, he became the greatest warrior of his time. However, he had one weak point - his heel. The story goes that his mother held him by his heel when he was still an infant and dipped him in the river Styx, so that he would become immortal. And as the story goes he became indestructible...except for his heel, that would eventually become his downfall, as this was the only part of his body that was not wetted by the water. During the Trojan war he was struck by an arrow (possibly a poisoned arrow) from the Trojan Prince Paris in his heel, and he was killed. The only vulnerable spot in his body, became his greatest downfall.

The story or legend of Achilles made me think about life, and how we approach life itself. In 2 Corinthians 12:7 Paul talks about a "thorn in his flesh", his Achilles heel if you will. Although Biblical scholars vary in their interpretation of what exactly this "thorn" was, it is not so much the thorn that I want to focus on, as it is the fact that he had a weakness or challenge that made him look at life from a different point of view. Paul acknowledged his weakness or challenge, but did not let it define him or prevent him from living life to the fullest. He used his "thorn" to motivate and challenge him to be better, to live life to the fullest. In the same way Achilles acknowledged his weakness, but again did not let his weakness define or stop him from becoming the greatest warrior, even though he knew that it may be his ultimate downfall.

In the last month I have lost a number of people in my life, within days of each other. Two of these people that I have lost were friends. They were those people that always saw the glass as overflowing, even though it was only half full, or at times even empty. It seemed that nothing could faze them or get them down. Ironically both of these friends died due to complications of blood clots that they had. It came suddenly, they got treatment, got better and then suddenly without warning were taken from this life. Looking at them and the impact that they made in the lives of the people around them, made me realise that we all have our Achilles heel, that vulnerability that have the potential to be fatal - but how we live in spite of that vulnerability and how we approach life and look at life in spite of that vulnerability, is what makes the difference. 

Achilles heel...we all have them. We can either acknowledge and embrace it and let it motivate us to greatness, or we can give in to it, and let it destroy us along with everything and everyone that we love and live for. CRPS is my Achilles heel, for others it may be heart problems, or blood clots, cancer or auto immune disease. The thorn or Achilles heel should not be the focus point...how we react to it and how we use it to motivate us to live life to the fullest is what really matter. 

This one friend of mine, had a heart attack a couple of weeks ago when a blood clot shot through his heart. The doctors told him he was lucky. I spoke to him a week after, and he was full of life and motivation. He spoke as if he was the healthiest person in the world. If I did not know that he was in hospital, I would not even have guessed it. He had the biggest heart. He had this presence around him when he entered the room. We still made plans for a chat over coffee. He was so sure that he would be back at work the next Monday and planned on showing me some new tools and machines that he bought and wanted to talk about my blog, go to the golf range etc. A week later, he passed away unexpectedly in hospital after suffering a massive heart attack. How ironic. His big heart, became his Achilles heel...and even then he did not let it steal life from him. Out of his hospital bed, he was still helping and caring for others. He has achieved greatness in spite of his Achilles heel. Roelof we salute you!

I often said this, CRPS does not define me. It may be my Achilles heel, but in order for me to be able to move forward, I had to embrace it. That does not mean that I am oblivious to the horrific outcomes of this disease, nor does it mean that I am ignorant of the fact that I have a disability. A while ago I was experiencing some remission. The last couple of weeks though, have been hell. We are mid in our winter season. The snow on the mountaintops causes the weather to drop to 2 and 3 degrees Celsius where we are. Buddy and cold weather do not mix. I think this winter has had a far greater effect on my hand, than last year's winter. Especially with the pain that is going beyond my wrist. It is really tiring. To top it off I am struggling a bit with a head cold. So every time I sneeze or cough, it feels like a painful electricity jolt shooting from my neck down the arm and into my hand, causing excruciating pain an numbness in my hand. So it is either one of my discs that's not a happy chap...or I am turning into the Flash with electricity shooting through my veins. Pain is exhausting. However, I will not allow it to consume me. 

Even though I faced many challenges after being diagnosed, I still did not trust my hand enough for other specific challenges. More than that, I used to use my hand (and CRPS) as an excuse not to take certain risks in certain areas of my life. I was reminded a while ago of Peter that had to take the leap of faith and get out of the boat so that he could walk on water (Matthew 14:22-33). While the wind was blowing around him and the waves were crashing against the boat, he was able to walk on the water as long as he kept his eyes on Jesus - that was all he had to do. The moment that he took his eyes off Jesus and faced them towards his surroundings and problems that threatened his faith, he started to sink. 

In much the same way, my hand has been like these waves crashing against the boat. I wouldn't take this risk, because my eyes were on my hand. Buddy became an excuse not to take certain risks for fear that Chucky may resurface and prevent me from taking on these new challenges (even though I have taken much more and much bigger risks in the last two years). [For those that knows the DC comics, it is much like killer Frost in the Flash Series - you can tell what we as a family is watching at the moment] So an opportunity came along where I had the chance to take said risk...and I did it. Yes I was hesitant. Yes my faith was shaken as I looked at the waves. But I went ahead and did it any way. Took my eyes off  my surroundings and focused it on the goal before me. And although the outcome did not go in my favour, I am glad that I took the risk. I am certainly at a much greater space in my life, where I will certainly take more of these types of risks in the future. And who know what my future might hold. Perhaps it may be the beginning of a new chapter in my life.

After many years of painful TB, where he eventually lost his leg to the disease, the Poet William Ernest Henley (1849-1903) wrote the well known saying: 'I am the master of my fate: I am the captain of my soul.' He came to understand that the way that he saw life and prepared himself to face its realities, determined his future - not his disability, regardless of how painful and debilitating it was. He understood that you do not shy away from the waves crashing against the boat, but that you face them head on, and use them as a motivator in your life to reach the goals that you have set for yourself.

Although some are lucky enough, not everyone has the opportunity to say their good byes before they die. Live so that others may remember you, not only when you are gone, but now - in the here and now - as a living legend! Any person who can stand up to fight another day, despite the pain and exhaustion, and show the world that their lives still have great value, that they still matter, and that they make the world a better place because they are in it, is a true legend.

Reinventing myself!

I have tried over the last year to change a lot of things to make it easier on my hand, without taking away the challenges or the abilities. For example, I have started to invest in lighter tools. I have found that with certain tools, for example a hammer or a drill, it has become more and more painful to use these tools, especially over an extended time, as they have become too heavy for my hand to manage. Often it is not only the weight or size of the tool, but also (in the case of power tools), the power and vibration of the tools. For example, the Jigsaw. Apart from the speed setting on the orbital jigsaw, the unit powers the blade to move, not only up and down, but in an elliptical cycle. This means it moves the blade slightly forward on the upstroke and slightly backward on the down stroke. All of this causes greater strain on your hand as you need to have a stronger grip and concentration, than a handsaw for instance. You also have to account for possible kickback, which can cause stress or trauma on your hand. Combine that with a hand that has its own personality and you have a recipe for disaster.

The same with the drills. I have found a lighter and smaller cordless drill than the one I always had, that is much easier on my hand, and which in actual fact has got more power than the older drill. Naturally there are certain tools like a grinder for example, that you unfortunately cannot really get an alternative to, due to the grinding force that it creates, but fortunately these tools aren't used that often. In certain cases, I am able to use my Dremel tool for certain tasks that I otherwise might have needed to use these tools. 

I also had to rethink the use of hand tools. So instead of using the hammer that I always used, I have found different hammers for different applications, with much less weight, that can do the same work (if not better) than the older tools. Smaller, more lightweight tools, enable me to do more. It still put strain on my hand, and it still challenges my hand, causing my hand to become tired, sore, burning with painful days afterwards, but it enables me to do things that I otherwise would not have been able to. 

All these tools allow me to do what I used to do before my operation, and more, while creating less stress on my hand (not NO stress, but LESS stress). Yes, perhaps it takes me longer to finish a project, but I am doing it.

But I also had to rethink and reinvent the way I used to do things. So for example I started to build myself a proper but simple workbench, with a bench vice, which allowed me to be able to start doing projects again. The next evolutionary event in reinventing the way I do things, was to build myself a proper table saw - as I never had one, and always had to work with the jig saw or the circular saw and a made shift table. But I did not want to just have a table saw, I wanted it to be multifunctional. So I looked for a design where you can fit different tools to it. So for example, the same table saw can be converted into a band saw, or a router table, or to convert a planer into a jointer and so forth. This is still a work in progress and I am using mostly recycled wood, so it may not look perfect, but I need it to do the job well, in a way that I can utilise it, rather than winning a pageant contest. I had to find ways to do projects in a way that I can protect my hand, while challenging him. This also meant learning to work with gloves, the right gloves - gloves that are strong enough to handle slipping blades - not only to protect Buddy, but also to protect my left hand against Buddy. This was quite an adjustment, but I have found a pair of gloves that does not leave a mark when you take a sharp utility knife to it. It does take away a bit of the feeling and sensitivity that you would have when working bare hands, but that is a price I am willing to pay if it means that I am protecting my hands.

I think the most frustrating about all of this, is the amount of time that it takes to make these changes and built these aids, as 1. it took strain on my hand while doing so, and 2. it took time away that I would have wanted to spend on doing other projects. However, looking at the way forward and my abilities to be able to do those other projects, it is not a waste of time. It is investing in my hand's readjustment. I use the word readjustment, as we know that there is no cure for CRPS, which means that using the word recovery is not really truthful to CRPS and can be somewhat misleading. I don't think there is quite a word that can really describe this, but I feel Readjustment do get somewhat closer, as (in order to experience remission) I need to adjust the way I use my hand, how I use my hand and how and where I challenge it. 

This has become a focus point for me over the last couple of months, as I have started experiencing that the CRPS might be spreading. Small things that I have noticed over the last couple of months, that have become full blown signs in the last couple of weeks since we are in winter. For instance, my wrist up to the middle of my forearm is extremely sensitive to touch. Even my medical aid band or my sleeve of my jacket, makes it feel like all skin is torn off and hot coals are thrown on the bare flesh. as I am typing here, my hand, wrist and forearm is in excruciating pain.

At last I have tried the hand warmer (Little Hotties hand warmers), and although the heat helped, I could not stand the sensory irritation that it created. These hand warmers keep warm for 10 hours, after which they are thrown away, but the bag that it is in, and especially the corners irritated the sensation part of my hand so much, that I had to take them out after a while. I have tried them inside my compression glove on top of my hand, but the heat did not go through to the inside of my hand. Then I tried them on my hand palm inside the compression glove, and it felt like sharp razor blades or thin fishing line cutting through flesh and bone. Perhaps a USB heated glove may help, but I am still contemplating whether spending that amount of money on a glove - that may or may not help - just to test it, is worth it. If it works, great. But if it does not work, then I have spent money that could have gone towards medication for example. So it is a catch 22, but let’s see what lies ahead. For now, I still need to find a supplier in South Africa that do supply those gloves, as most of the ones that I have seen is overseas. And then again, it need to be a comfortable material that will not irritate the CRPS.

What about the Rhisotomy? Does not seem to have worked...again. Neck pain is still as bad as ever, arms are getting numb, and whether it had any effect on rewiring my brain...well only time will tell. For now, it does not seem that way. But I still have the coping skills that I have built up over the past two years to get me through every day. 

 

We recently took our kids ice skating. Buddy really did not like the cold. I tried to teach both Liam and Malan to skate. Malan eventually came right, but I think Liam enjoyed the falling on the ice much more than trying to skate. Somehow he mastered going backwards and going in circles, but he just could not learn to skate forward - too wild and hasty. But we had great fun. That night I did not have much sleep, as both Buddy and my neck flared up really bad - but it was "worth" it. There was a point however that both my hands were on fire. I do not necessarily think that my CRPS has spread to my left hand. Perhaps my left hand had a form of "Couvade syndrome" - just instead of mimicking labour pains, he was mimicking the burning in my right hand. But for now I am not too concerned about that. (we took them ice skating a second time, and this time Liam actually learned to skate)  

Meanwhile, I have started to take on my medical aid. I have gathered reports from most of my medical team (therapists included), as well as all my test results, which I forwarded to them, stating my case, in the hopes that they might cover my medicine, or at least part of it, under the chronic benefit. Most of my medical team is on board with this and willing to help. Might be a long shot, but I am prepared to take it as far as I need to. If I succeed, this may be a win for all CRPS warriors that find themselves in the same situation as myself. I will keep you updated.

CRPS and vitamin Supplements

The question was asked recently on one of the groups whether vitamin supplements have any influence or effect on either preventing and/or rehabilitating CRPS. 

On 2 July 2021 an article was published online in The National Library of Medicine with the following outcome:

"A total of 2026 patients of whom 632 males and 1394 female were collected in our systematic review. During the entire follow-up period, the occurrence of CRPS-I was evaluated in 1939 patients. Five of the six analysed studies were favouring prophylactic use of the 500-1000 mg daily dose of VC for 45-50 days after orthopaedic or trauma care for prevention of CRPS-I. Only one study found no benefit in VC supplementation compared with placebo to prevent CRPS-I. Analysis of the literature suggests that a daily 500-1000 mg VC supplementation may reduce the onset of CRPS-I in trauma of upper/lower extremities and in orthopaedic surgery."

This was only one study, and the result was that Vit C in high dosages might help to prevent CRPS-I after surgery...in some cases.

There is a website called https://complextruths.org/ which is aimed at CRPS warriors and helping them to live a better quality of life. I do not think that the aim of this website is to promote any "cure" for CRPS, but what they are doing is to look at alternative and natural ways to bring relief to CRPS warriors, without taking away from medicine and coping skills. One of the things that they look at is "Dietary Supplements for CRPS"

It is an interesting read, so I will rather post the whole article here as is, than try and summarize it.

Dietary Supplements for CRPS

Treating Complex Regional Pain Syndrome with Dietary Supplements

Dietary Supplements should be added to every CRPS warriors armory against this disease. From fish oil, which is known to help against allodynia and hyperalgesia, to ginkgo biloba to help fight brain fog, and Vitamin D, which is depleted faster than normal thanks to the CRPS, your body needs vitamins more than ever now. Here is a list straight from our Board of Director's mouths to your eyes, and hopefully, to your belly's, to feed your systems. Whenever possible, try to buy Gluten Free, organic, and naturally sourced.

Many of the procedures we have listed here are FDA approved or are in pre-approval stated, but many are not, and are in circulation around the United States and around the world. We will note whether they are FDA approved (to the best of our knowledge) on the page, but if you know different please, share the truth with us in the comments and we will do our best to follow up. All treatments listed are treatments that are in an active state and are currently in production and being purchased by people with the disease. Our intent of sharing this information with you is to educate, inform and publicize what treatments are available to you so that you can make the best decision for you. If we have personal knowledge, or if our doctors have an opinion, we will notate that in the post, but otherwise, we try to stay unbiased and let the community speak for themselves.

Alpha Lipoic Acid

Several studies have found that Alpha Lipoic Acid (ALA) can help with neuropathy -- nerve damage --related to CRPS, reducing symptoms like pain, tingling, and prickling in the feet and legs. It plays an important role in improved nerve function, reduced inflammation, lower blood sugar levels, weight-loss, diabetes, slowed skin aging and other health conditions.

CBD (Cannabidiol) Oil

Are you looking for a safe, natural and effective way to relieve your chronic pain but don't want the "high" associated with Marijuana known as THC? CBD is rearing its head as the new non-drug (and legal) of choice in a town that has a lot to offer without the risk.

Cinnamon

Many people who suffer from the chronic, intractable pain of CRPS which causes joint and tissue inflammation, are turning to natural supplements to help control their pain. Cinnamon is just what the doctor ordered and Cinnamon is a natural spice which can easily be added to many of your favorite recipes or taken in gel capsules to get your daily serving.

Fish Oil Omega-3 Fatty Acids

Studies have shown that fish oil can slow the progression of neuropathy and help certain symptoms of CRPS such as allodynia and hyperalgesia. These studies show that anti-inflammatory properties are useful in reducing pain and discomfort. Its neuro-protective effects can help to stimulate neuron out growth.

Ginko Biloba Herb

Gingko Biloba is a top-selling supplement due to its long-list of cognitive benefits and well-known abilities to help fight mental fatigue & brain fog, increase cognitive function, improve memory, and increase mental agility to easily perform everyday tasks.

Green Tea Supplements

Green Tea is one of the most powerful antioxidant on the planet and is capable of stopping the unstable molecules called free radicals from damaging your cells. The positive effects on that it has on the brain and heart is just what the doctor ordered for your nervous system and circulation - the main systems impacted by CRPS.

L'Arginine Supplements for Circulation

L-Arginine is primarily used to increase circulation and blood flow for enhanced vascular function; including areas of the body like the heart, head, and eyes. Some believers that suffer from CRPS say that the longer they take it, and with CONSISTENT use, it can even take the edge off the burning nerve pain and it can actually help warm up ice cold skin temperature because of the increased blood flow.

Magnesium

Do you suffer from brain fog, muscle cramps, migraines, and nerve pain from chronic pain brought on by Complex Regional Pain Syndrome? That could be because CRPS causes nutritional depletion of many nutrients, minerals and vitamins due to the myriad of drugs to help us fight the symptoms of CRPS.

Vitamin C

High Doses of Vitamin-C after an injury have been shown to decrease onset on CRPS in some studies, which have shown that Vitamin-C can be used as a preventative, if used in high doses of 500mg, for no longer than 50 days, following an injury such as a wrist fracture.

Please note, that none of these types of food is a magic cure for CRPS, but I do think that, seeing that the body is more than just flesh and blood - as CRPS so clearly proves over and over again - it is something that every warrior, not only CRPS warriors, can look into as a way to prolong life and hopefully decrease pain to some extent. Again it is not a magic cure, and there may not be one of these food groups or vitamins that bring any relief to you, or perhaps it inflames other medical issues...or perhaps it may just be the thing that you have needed all along to enable you to live a better, easier life with CRPS. I know in my case, Cannabis (CBD) is not an option as it increases my pain, but for others it may be helpful.

When I think of my dad, I remember how he always taught us as children that a lot of medicine has its origin, or its roots (pardon the pun), in plants or in nature. Things like Aloe Vera has long been used in its original form, before being "branded" in the form of pills, creams, drinks and so forth. Things like Cannabis, sour fig, African Wormwood, Buchu, Rooibos and many more were used through the ages in various forms for their natural anti septic, anti-inflammatory and medicinal properties. I remember how our house used to smell of buchu vinegar (used for sprains), or African wormwood or buchu (boiled as a tea), fresh rooibos tea (made from freshly dried stems). 

The same with vitamins. We did not have all these vitamin supplements of today. Perhaps they were on the shelves in the eighties, but it was very limited, and not really affordable for the average Joe. Between us and the neighbours, we had guava trees, pear trees, vineyards, loquats, strawberries, gooseberries, mulberries, quinces, figs and more. That is where our vitamins came from, directly from the earth. We grew our own corn, green beans, carrots, potatoes, tomatoes, broccoli, cauliflower and more. Again, that is where our vitamins and dietary supplements came from. Fizzy drinks were a luxury. We drank freshly squeezed juice or we got fresh juice delivered by the milk man (or Milky as we used to call them). That was where our vitamins came from.

Perhaps it was a much simpler time, without the fast foods, preservatives and packed schedules of today. Having a telephone on the wire and not cell phones and laptops made that we were less stressed. If you missed a call, that was it - you missed it, and probably did not even know it. People talked to each other, instead of sending emoji’s. Your actual face was the emoji. Families had dinner together, without the tv. In a sense, the world made more sense back then. Yes, a great deal of the diseases that we have today was misdiagnosed because of a lack of knowledge, but I do think that we lived healthier lives, that helped us to manage a lot of these things much better. Many of us probably lived with these diseases without knowing it. And because some of these diseases was not known, treatments were not readily available, as modern technology to diagnose these diseases and develop these treatments were still experimental and in development stages. But then there were also those diseases that doctors already knew about, like CRPS, that are so complex, that proper treatments are still being developed and re-evaluated and tested. This is not always a quick and easy progression.

At the end of the day, treating CRPS is not as simple as popping a pill. Treatment involves a holistic approach. I had extreme pain earlier the week, and somebody asked me why don't I take something for the pain. I answered her, "Pain medication don't work. It is like a foreign substance that enters my body, and my brain shouting to my body - that's probably for you - and my body answers - I don't touch that stuff, it must be yours".  

Yes, I do use medication, but for a different purpose. But the medication alone is not enough. All of these coping skills, mirror therapy, re-inventing myself, taking in vitamins etc. is needed to treat something so complex, that it becomes somewhat more bearable for me and enables me to push my limits. Lets face it, we all need a little bit more sun and natural vitamins. In the next chapter we will be looking at spoon therapy. Take care.