CRPS My Journey: Chapter 22 - Autoimmune or not - The Most Painful Disease known to Humans!

Economic hardships

One of the things that they tell you in the briefing before a flight, is that, should there be a drop in cabin pressure, to put on your own mask first, before you assist your children. You do this so that you will be able to assist them, as an unconscious parent, due to a lack of oxygen, will be in no state to assist small children, but will need help themselves. This may sound selfish, but do make a lot of sense. If only life could always be as clear cut as this. Life, unfortunately, is not always black and white. Often there are a lot of grey areas in between, and at times, even those grey areas have different shades of grey.

So while a parent's inherent nature is to protect your children at all cost, it does not always come without a price. A while ago, I was placed in that position due to financial strain. Our medical Aid is depleted, and as you know by now, Medical Aids refuse to see managing pain as reason enough to authorise certain medications to be included as chronic medication. So what do you do when your medical aid is depleted? You start paying out of pocket...until you are not able to do so anymore.

As with all things in life, life happens regardless of whether you are prepared or not - and most often the impact is much worse when you are not. With everything going on in the world right now, many households are struggling to survive, as the rise of inflation, interest rates, fuel prices, basic utilities, food prices, devaluation of currencies etc., is not in line with the increase in salaries. For example, R1000 today, has much less value, than R1000 a year ago, yet interest rates and the cost of living has risen multiple times in the last year. Now for a household to "survive", the assumption is that you need to be able to pay all your bills, put food on the table, fuel in your tank and at least break even - if there is money to put away as savings, then it is a bonus, but in survival mode savings is not a given. The unfortunate truth for many families are that, where they may have been able to go in survival mode a year ago, even with extra income, salary increases and so forth, they are not able to reach that level of survival mode any more, and it feels that they are slowly drowning. 

This also happens with medical aid. I am not going to go into this too much, as we already touched on this in Chapter 20, but I do want to say something about the Chronic Benefit and the effect that being denied this benefit has on patients that need the medication. The money in your savings account, that your premium was able to buy, might be the same, or perhaps even more than a year ago, but as with the rest of the economy, medical costs have increased, leaving you with much less in your pocket. And when you need to use chronic medicine, which the medical aid refuses to pay from the large amount available in your chronic benefit - in certain cases unlimited funds, it depletes your savings and day-to-day benefits even faster. So at the end of the day, we are paying for a benefit, that is in actual fact a loss of income to us, as it only acknowledges 26 chronic diseases - and even then there is no guarentee that these 26 diseases will be fully covered, if at all. Thus, part of your premium goes toward a chronic benefit that is available should you need it, but denied when you need it. So if in a family of 4 you need chronic medication to the value of R2000+ per month, that means R24 000+ per year worth of chronic medicine. That money is in your fund, under the chronic benefit, but the fund denies you the chronic benefit - that you pay for. This forces you to dive into the savings and day-to-day benefits, and eventually, much sooner than you think, out of own pocket.

So whatever portion of your monthly premium is allocated towards the Chronic Benefit is basically going into a bottomless pit when you cannot use it, due to certain terms and conditions. In fact, even when you are able to use this benefit, it does not guarantee that your medication will be covered in full by this benefit. Don't get me wrong, I do understand that they need to prevent people from crying wolf (in other words claiming for certain medications as a result of being dependant on it without needing it), but when you have a fully diagnosed disability or disease that is strictly monitored, I think it does make a difference. That certainly need to count for something. I know of numerous warriors that are fighting this same battle, even to the point where they have approached the Council of Medical Schemes and even the courts. This however, can be a long and treacherous process, without any guarantees. And the outcome is determined by the legal backing of the medical aid, more than how strong of a case you, as an individual, present. I myself have started battling my medical aid in this regard. A month, and still no feedback other than they will come back to me.

A story that I recently came across is that of Lyla McCarthy, a 10-year-old girl that has been diagnosed with CRPS. Although there is evidence that, the sooner treatments begin, the greater the outcome, her mother's medical insurance immediately denied her the treatments. Click on the following link to see Lyla's story:

Lyla's story

Going Cold Turkey

Perhaps you have heard of the term "going cold turkey". This means to "withdraw abruptly and completely by a sudden ending of taking your medication". Basically the same as a drug addict that just suddenly stops the drug abuse. Not a recommended action for any person that needs chronic medication. So what do you do when you are a dad that uses chronic medication, and you have a son that needs his chronic medication, but your funds are depleted and out of pocket is not an option? Well, I have been in that situation a few weeks ago.

This is one of those situations in life where there are grey areas in life, until you decide to make it black and white. Being a dad, the last thing that you want to see is your child suffering. Malan, my oldest, need certain medications daily to help him cope with anxiety and focussing. He is not a difficult child, nor is he one that bounces off the walls. Apart from being an introvert and a perfectionist, he struggles to handle emotions, sensory overload and to operate outside of his own world or bubble. He is a very loving, bright and creative child, but he needs that extra help to get him through life, or rather to help him cope in life.

So with both of us having to be on Chronic medication (in his case schedule 5/6), we are both in the situation where the medical aid refuses to pay our medication out of the chronic benefit, despite myself being diagnosed for two years, and him being on this medication for the last 5-6 years. With him still learning to cope with life, especially where he is entering his teen years now, and myself having learnt so many coping skills in the last two years, the grey area, suddenly became very clear, and the outcome much different than being on a plane with cabin pressure drop. In my mind it was clear. The only way to get through this, was for me to go cold turkey, so that he could continue with his medication, especially with his exams drawing closer.

Perhaps not the best thing for a CRPS warrior to do, but then again I am a father first, and then a CRPS warrior. (My perception) And I reckoned that I would be "okay...ish", seeing that I have some coping skills to fall back on. I may not be the father of the year, but when it comes to my kids and their wellbeing, something like this is not an option or debateable. My children come first. And it is not as if I would drop dead or anything, I would just have to be prepared for increased pain and burning and other possible side effects - how bad could it be...

So how does it feel to go cold turkey? Well much like before you go off the meds, just in way greater over drive. In my case increased irritability and exhaustion, lots more pain and burning, full body sensitivity increase, increased and decreased appetite, nausea, increased disassociated behaviour, heart palpitations, lack of sleep and increased anxiety. My neck flared up more, as my hand flared up, and my hand started flaring up towards my elbow. So how did it affect Buddy? You know like in Hulk, Venom or Jekyll and Mrs Hyde, where the alter ego or alien or personality wants to take over, and break out of that human shell...well more or less like that. Chucky was ready and wanting to break free and take control again, literally shaking to get free.

A year ago, this might have scared me or be problematic for me, but having learnt some coping skills, I had something to fall back on. Yes, I had to work twice as hard on my coping skills, and perhaps it has set back my progress somewhat, but the alternative would be much worse. If I were not able to do this, Chucky would come alive again...and I could not afford that. Just as with the Cymgen, I do not regret going cold turkey. It was not as if I thought it may be a good idea to be reckless, but I did see this as a learning curve that also taught me what I can and cannot handle when I am not on the medication. Remember that for almost two years I have been on medication to slow down the messages to my brain, while my brain did not recognise my hand as part of my body. So in a sense I have forgotten what it was like to be without those meds. And I have read up a lot about possible reactions or side effects for going cold turkey. And if I did not have the skills in place, that I do, I probably would not have done it, but would have had to look for different solutions to the problem. So in no way do I recommend to anyone that going cold turkey is the thing to do. In my personal case, at the time, it was the right thing to do, to rather have my son, that do not have these coping skills yet, get the medication that he need.

But, that is the heart of a father. We do what we need to for our children, so that they could have a better life. I remember a couple of years ago when I was going through a tough break in the business and had to take a job as a janitor at a school. People would come up to me and say, "You were in a Provincial Management position and thereafter owner of a business. Now you are a janitor." And my answer would always be the same, "I am a dad first, and as a dad you do what you need to provide for your family. Status does not put food on the table. Money puts food on the table. What does it help to have status, but I cannot provide for my family?" I would give my left kidney in a heartbeat, should one of my children need it. Going cold turkey, so that my son could have his meds, was not a sacrifice, it was not a heroic gesture. It was purely a dad loving his child so much that he was prepared to put his son's needs in front of his own.

But as I said, it is not always that easy. There are times when you need to make the more difficult, almost selfish, decisions like putting your mask on before you do your kids, so that you are able to take care of them. I remember back in 1985, at eight years old, I wrote the following on the 1st page of my Bible: "It is better to give than to receive, but sometimes you need to be able to receive, so that you are able to give". I think a lot of us struggle with the receiving part as it makes us feel vulnerable and needy. We were brought up and taught that it is better to give than receive, and that "self-love" is a sin - ignoring the part that says "Love your neighbour AS YOURSELF" (Matthew 22:39). How does this have anything to do with what we are talking about? If I have not opened up myself to receive the guidance and instruction from others to build and develop my coping skills, I would not have been able to give myself in this way when my child needed me the most. So although I had to go without my meds, I looked after myself by focussing on my coping skills, while still attending to the need of my child. Hope that make sense.

But yes, don't go cold turkey if you do not have to. CRPS does not like it! Remember, I have the luxury of looking back on the past two years and draw from what I have learned. There are warriors that are in early stages that do not have that luxury yet. Also, there are warriors that have been using certain medication for many years, who definitely should not go cold turkey. Speak to your doctor first, so that you can be educated and prepared for what you will experience.

CRPS and your Immune System

A lot has happened since February this year. I had a cold, landed in hospital with cellulitis, got the flu again, went for the Rhizotomy, got an abscess in my nose cartilage that made me quite sick...and now I have the flu again...And all of this happened without skipping a beat, despite all the vitamin supplements. Battling the flu this time around is different than before. Perhaps it has to do with going without my meds. Yes, I have been back on my meds for a week before I got the flu, and I have become used to Buddy giving warning signals that something is coming, but not like this. It is as if my whole body went in super hypersensitive mode. Buddy flared up with pain shooting up all the way up my arm. My neck flared up so bad, running pain down my shoulders and back, with pain mimicking a pinch sciatic nerve. And these were not even the normal flu symptoms like the fever and body aches and so forth - that was just to seal the deal. It is bad when you try to sleep, but the blocked sinuses and post nasal makes it hard to fall asleep, and then eventually when you fall asleep, you do not really sleep as your hand is in so much pain, and constantly pushing that pain up your arm, so that you cannot get into a comfortable position. And entering our cold and wet winter season does not help either, as the cold is just creating havoc with the pain signals in my hand.

This has led me to start reading up on the effect CRPS has on the immune system. Although CRPS is not an auto-immune disease per se, I do believe that it plays a major role in how your body treats or sees your immune system. If my brain can change its perception of my hand, and how he treats my hand as result thereof, then it definitely can change its perception of my immune system, and how it reacts to that. And if what I have learnt about the relationship between CRPS and a lack of sleep, or CRPS and lack of exercise or CRPS and temperature variations is true, then I can, with a fair amount of certainty, say that there is also a direct link between CRPS and a compromised immune system. So it may not be an auto-immune disease per say, but it does weigh down on one's immune system.

So one of the studies that I have read on this, states the following:

Immune system involvement—The C-fibre nerve cells also communicate with immune cells to help us heal from injury. Excess or prolonged nerve signalling can dysregulate immune cells in the affected limb, as does CRPS-associated poor circulation. You may have elevated local levels of inflammatory chemicals called cytokines that contribute to the redness, swelling, and warmth in the CRPS-affected limb. CRPS is more common in individuals with other inflammatory and autoimmune conditions such as asthma. Some individuals with CRPS may have abnormal antibodies that promote an immune attack on small fibres. 

(National Institute of Neurological Disorders and Stroke https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6125849/)

Another study suggests the following:

Recent observations indicate that CRPS may be an autoimmune condition, in which a person’s own immune system starts to attack healthy tissue. For example, in some autoimmune conditions, plasma cells (found in the blood) start to make large amounts of proteins called antibodies which attack the body. To treat this, blood can be extracted and filtered to reduce the number of antibodies present in the blood, before being returned to the patient. This is known as plasma exchange therapy, and initial data suggests that people with long-standing CRPS experience dramatic pain improvement following this treatment. The researchers will use this knowledge to study mice with a CRPS like condition. This will allow them to identify which nerve cells are responsible for the pain signals, and how CRPS antibodies work with them to cause pain. (https://www.versusarthritis.org/research)

Although this is only two of numerous studies that have been done on CRPS, it does point towards the possibility of CRPS being either classified as an autoimmune disease, or at least having a major effect on your overall immune system. However, a lot of research still need to be done to eventually confirm whether CRPS can be diagnosed as an autoimmune disease or not. The problem? Well it is in the name..."Complex". Because this disease is so complex, so much is still to be discovered and studied. It is a disease that was given a name more than a century ago, but still so little is known and understood about it. As a result, treatments are done on a trial and error system. And it is not that all medical professionals just want to put a plaster on it and send you on your merry way (although you do get some of them that do). It is a simple fact of sometimes they just do not know. And as said before, there are medical professionals that have never before heard of CRPS. A very strange, but true fact - even though the first case of CRPS was diagnosed or given a name 159 years ago. Shocking! The disease is so complex, that what works for one warrior, does not work for another. And it seems that, from these studies, it also has a lot to do with your immune system, your family's medical history, and whatever other medical conditions you struggle with.

One thing that is definitely clear from these studies, is the fact that CRPS, whether autoimmune or not, definitely affects your immune system. Which makes sense to me, when I look at symptoms of SLE for example: always tired, always in pain, struggle to heal from even the normal cold - usually gets it much worse than people that do not have autoimmune disorders - flare-ups in the areas where SLE attacks the body caused by various conditions etc. With CRPS my experience is that it mimics or follows the same patterns as with auto immune disorders. And as I realised the last couple of months, battling CRPS cause you to focus all of your energy on just that, so that the rest of your immune system are exposed for attacks. And unfortunately your body just do not have the strength or energy to spare, causing your body to lower its defences so much so, that when you fall ill, it becomes this vicious cycle where you just cannot build up enough immunity against viruses and bacteria. On another level, if you take in consideration the fact that your brain and your affected body part is not communicating with each other as it should, it can be seen much in the same way as an autoimmune disease, where the body's immune system is attacking its own healthy cells/tissue. With CRPS, much like lupus, SLE, ME and numerous other autoimmune diseases, the body is at war with itself. YET, it is not classified or accepted by medical aids as a chronic auto immune disease. If it looks like a duck, quacks like a duck and swim like a duck, it surely must be a duck. Unfortunately, in the case of CRPS, it is not seen that way.

There is currently a documentary on Netflix, that is an absolute must see called "Taking care of Maya". The true story of Maya Kowalski who fell ill at age 9, was diagnosed with a bad case of CRPS and how she and her family was let down and mistreated by the medical and court systems - much like Lyla's story. It shows the devastating effect it had on her family. It is horrific that there is so many untold stories of warriors that has been neglected and mistreated by the system, much like Maya and Lyla. This is why it is so important to get the message out there and to educate people on CRPS. Almost 160 years, and we are still very much in the dark about CRPS and the effect it has on the human body and on our families. Let's hope it will not take another 160 years for medical professionals, medical aids and the courts to acknowledge and treat CRPS warriors with the necessary urgency, respect and care that we deserve. I am one of the lucky ones to have a medical team that have an understanding of CRPS and that goes far and beyond to help me. Others are not so lucky.

DBT: Distress Tolerance

In the previous chapters we touched on Mindfulness, Emotion Regulation and Interpersonal Effectiveness. I am closing off this part of DBT with Distress Tolerance. What is Distress Tolerance?

Distress tolerance: This involves understanding and managing your emotions in difficult or stressful situations without responding with harmful behaviours.

Thus, let's say I have self-harm or suicidal thoughts due to the pain. Distress tolerance would be to understand where these emotions come from and how to manage them. The goal is to not respond to those emotions by giving in to them, but rather to deflect that emotion by doing something else that is more productive or and in essence the total opposite. It does not mean that you are in denial. You have to acknowledge that emotion in the moment, without giving in to the emotion

Distress tolerance skills help you accept yourself and your current situation. It teaches you various techniques that helps you to cope with intense emotions, with a positive long-term outlook, such as:

• Distraction - Make a list of distracting activities to use when you start to approach emotional crisis.
• Improving the moment - Reconnect with the present moment when thoughts about the past or future are becoming unproductive. Learn how to become accepting of realities without unproductive emotions. (Radical Acceptance)
• Self-soothing - Use your five senses to help reduce out of control emotions.
• Thinking of the pros and cons of not tolerating distress - See what problematic behaviours are costing you and whether it is worth making a change.
• TIPP - Calm emotions with Temperature, Intense exercise, Paced breathing and Progressive muscle relaxation.

The idea is to put your body in charge of your emotions, rather than your body acting on or following your emotions. For example: "Run up and down the stairs. If you're inside, go outside. If you're sitting, get up and walk around. The idea is to distract yourself by allowing your emotions to follow your body."

The reality is that the pain and burning that CRPS brings, tends to take you on an emotional rollercoaster. That is why CRPS is duped the Suicide Disease, as many warriors cannot deal with the intense and constant pain and burning to a point where they see amputation and/or suicide as a last and final resort in dealing with CRPS. The aim of Distress tolerance, and DTP techniques as a whole, is to stop warriors before they get to that point, and to show them that some quality of life can be possible, despite what they are going through.

 

To read more about DTB, you can follow the following links:

https://www.verywellmind.com/dialectical-behavior-therapy-1067402

https://my.clevelandclinic.org/health/treatments/22838-dialectical-behavior-therapy-dbt

https://dialecticalbehaviortherapy.com/

Thank you for taking the journey with me over the last two years. I may be taking a break for a while...unless I have more to share😉. This is definitely not the end of my journey and I will keep you updated on what's happening with the medical aid, as well as my health. The most amazing part of this blog thus far has been to be able to help other warriors by putting into words what so many of them did not know how. Thank you for the opportunity to allowing me to share my journey and my own personal struggles with you. 

I close off this chapter with another video clip that explains what we all experience every day of our lives. Take care!

CRPS: The Most Painful Disease Known to Humans [complex regional pain syndrome]