I consider myself lucky! There are many people in advanced stages who have suffered way too much dealing with Ankylosing Spondylitis pain. I suffered for 9 years, but that is nothing compared to those who lost it all in the shadows of their disease….
Disclaimer: This article is for blogging purposes only. it is not meant to treat or diagnose any disease you may or may not have. For medical advice, treatment and diagnosis please see your doctor or a licensed medical professional. Do not take any of the information in this post as advice of any kind. This blog post is meant only to share my personal experience recovering from Ankylosing Spondylitis.
Just like everything in life that goes against the norm and what others believe when I tell people how I healed from Ankylosing Spondylitis they look at me with a funny eye and the first thing that comes out of their mouth is “it’s just remission.” I usually smile and think to myself, if I can willingly go into remission and stay there what in the world will ever get me to go back into having pains and swelling again? The next thing they say to me is “you never had the disease, it was probably something else!” and again I smile and say, God bless you and may he hear your words and may that idea manifest into reality. That way I can have a chance at enjoying my late teen years and early twenty’s again. I was officially diagnosed with Ankylosing Spondylitis when I was 23 years old. I had occasional symptoms since I was 13 years old but nothing was certain during those years. I was prescribed TNF blockers but had to withdraw due to experiencing something called “drug induced psychosis” from a drug called Isoniazid (INH). This pre med was meant to clear my body from tuberculosis after a failed TB test and it nearly cost me my life. I was suicidal for months, the fact that I did not kill myself is a miracle on its own. I experienced every single symptom needed to diagnose someone with the Ankylosing Spondylitis. My Sacroiliac joints are fused and I am glad that is as far as the disease progressed. Those who doubt that I ever had the disease are the people I love the most, because they show me just how amazing my journey has been thus far. The only question I ask those people is, “If you and I both had the same exact symptoms and you believe I was misdiagnosed, what makes you so sure you were properly diagnosed?” The good news is that I no longer have a need nor desire to continue living my life under the never ending grip of chronic pain. I no longer have a need to “manage” my health with special diets or special exercises. I live a happy normal life as if the disease had never taken place. There is no desire within me to convince anyone that they too can do what I did. However I am firm believer in treating others the way I would like to be treated. Which means that if nine years ago I would have come across a post like this one my life would have been totally different. This post is dedicated to those who seek possible solutions to their current situation. My method of healing may only be just one of many, and in order for it to reach those who need it I have to at least write about it.
Before claiming that I successfully healed myself from AS and making myself the center of a controversial topic I had to see this for myself and see if others suffering from AS can experience the same thing I have. To test this theory I decided to coach as many people as possible with AS to see if teaching them what I have learned can get them relief as well. 11 out of 16 people so far are symptom free, the other 5 are seeing major improvements without diet or special exercises (Since I originally wrote this post I have seen many more). Some have stopped the meds (with their doctor’s permission) and can deal with the small amount of pain they occasionally experience. Out of all those people one stands out the most and for privacy reasons I will use a nick name (Dan). I met Dan on Facebook a long time ago, we made contact on support groups for AS mainly because we are both from New York City. Dan was treating his AS with diet and was taking a mild anti-inflammatory drug. One day he messaged me that he was in a bad flare up after eating some starches. I asked him if he can meet me at the gym that I wanted to speak to him in person about something I was experiencing. We met and spoke for about 4 hours, had dinner and went our separate ways. The next day he texts me and tells me that the flare was gone! This is not rare; some of the others had experienced the same very strange phenomena of waking up the next day nearly completely pain free. This is when things started to get very weird. A disease that is sweeping the world and taking away many people’s youth disappears in a matter of days all depending on the person. Before you start to think to yourself it’s total BS let me explain why…
Many health care professionals know Ankylosing Spondylitis as a “psychosomatic” disease along with most autoimmune diseases. When I first heard the word “psychosomatic” I raged in anger because I understood it as something that is all in my head and wasn’t real. How is it possible that something so painful with physical symptoms like inflammation and physical misconfigurations can be all in my head? The thought of it alone is extremely insulting to anyone who has the disease but lets continue. Being the obsessive person that I was at the time. I went on a mission to prove just how real the disease is and how we can manage it through diet and exercise. I learned that the disease started in the digestive system. In a strange way my body lost its ability to digest sugars, also known as carbohydrates. Carbohydrates are broken down with an enzyme called amylase. Which is released in the salivary glands and later on from the pancreas and into the upper intestines. When complex carbs like starches are not broken down properly they make their way into the lower intestines where a bacteria known as klebsiella feeds on the remaining starch. With a surplus of food this bacteria over populates the intestines and triggers an immune system response where the immune system starts to attack the bacteria. According to research klebsiella is very similar to certain genetic proteins (HLAB27 amongst many) and when the immune system starts to attack the bacteria it also starts to attack other places where the protein is found such as the major joints and the spine through a process known as molecular mimicry. Many people take care of AS using a low starch diet protocol where they cut out all starches and sometimes simple sugars as well to starve the bacteria and stop the immune system from attacking. The problem is that not everybody improves on this diet. If this theory was bulletproof everyone should be able to benefit. I experienced amazing results on this diet but here and there I would still wake up stiff even though I was on a full ketogenic diet (no carbs at all). To make one thing clear, I do not need to follow a diet to remain healthy anymore. If you are considering following a diet for healing please do your best to not make it a life long thing. Strict diets can result in malnutrition and may cause even more severe health issues than the one you are attempting to correct. I ended the diet after I was able to create inner peace and release the anxiety/depression I held in my body for many years. Now I can eat whatever I want whenever I want and not have any issues.
The HLAB-27 genetic protein is really all we have to come up with a diagnosis of AS besides all the symptoms that can be observed. This protein can also diagnose IBS/IBD, and Crohn’s. That led me to question things a little more. If we are improving by cutting starch and eating simple foods then obviously the problem is that we are not digesting our food properly and we have IBS and Crohn’s to prove it. My next quest was trying to improve digestion. I started to drink only distilled water at room temperature; no more cold beverages and I added a short workout before eating to improve digestion. I also started to eat slower and chewing my food better. It helped a little and I was able to have some starches, no more than 4 ounces a day but it was an improvement. Today I know that besides the HLAB-27 marker there are other factors that can trigger the disease. Such as a person’s emotional lifestyle and psychological schema.
I learned that one thing that helped a lot in digesting food was a healthy nervous system. The autonomic nervous system is divided into two parts, the sympathetic (fight or flight) and the parasympathetic (rest and digest). The sympathetic nervous system is responsible for fight or flight responses like the ones we experience from panic attacks or when someone spooks us walking down a dark hallway. Hormones such as cortisol and adrenaline are released when the fight or flight response is activated. In an interesting way the response can be triggered by a tangible real life physical threat as well as by a non tangible imaginary threat. Stress hormones are toxic to our body and when the body is stuck in a loop of the fight of flight response it does not digest food properly. Mainly because cortisol drives blood away from the digestive tract and into working muscles. This is what most people call “stress”. However, the word stress in this case is inaccurate. Stress is what the body or mind experiences when you put it through strenuous activities. This response is more like the one where your body is fighting for its life. My body was constantly reacting to life as if my life was in danger! I began to practice coherent breathing and certain meditation techniques to slow down the body’s stress response and activate the Parasympathetic Nervous System that allows us to digest food and sleep better. Again I felt much better and more relaxed but still experienced panic attacks here and there and was still not able to eat more starch than usual. The more I understood the link between chronic anxiety and AS the better I understood the nature of AS all together. It wasn’t all in the mind but it sure was rooted there.
My next quest was trying to understand anxiety; I needed to understand why I was anxious and fearful all the time if there was nothing to be worried about. If I wanted to fully engage the parasympathetic nervous system I had to conquer the anxiety so I began to do more research on anxiety and why it was happening. I learned that anxiety not only causes physical pain but it also causes lightheadedness, chronic fatigue, restlessness, depression, back pains, digestive problems and symptoms of fibromyalgia. It was an amazing door that had opened. I finally started to understand that, AS is nothing more than an Anxiety disorder that was affecting us emotionally, physically and spiritually. It was like being possessed by a demon that literally controlled my behavior, thoughts and decisions! If I wanted to heal AS I needed to conquer the anxiety and I needed to understand where it was coming from! There is lots of research suggesting that a misbalance in the gut flora can cause anxiety, however, it can also work the other way around. Severe anxiety can cause a misbalance in the gut flora by weakening the ability to digest complex foods and the lining of the stomach walls. Which can then lead to something most people call leaky gut. In my case the anxiety started the cycle after several traumatic experiences. Most of which occurred during childhood and many I had completely forgotten about (repressed memories). For some it can be the digestive problems that are causing the anxiety and harming the body, but for me it was my internal and traumatized interpretation of life that was triggering anxiety nonstop and harming my body.
It is important to understand that not all cases of AS start the same. For some people it starts in the gut. Where an overgrowth of yeast and other bad bacteria starts to affect mental clarity and other parts of the body. Leaky gut is a weakening in the lining of the stomach and the intestines. It has been found that lifestyle and the foods we choose can cause this strange phenomena to happen. It is very easy to choose quick and convenient foods when you have so much to do. Modern life leaves very little room to prepare a meal from scratch after a long day at work. Unfortunately the body does not do well with those types of foods. The process that brings our foods from the land and onto our dinner table is far from perfect. Most of the food we find in our supermarket is poison to our body. When we continuously choose to eat the processed poison we call food. Our body suffers and it starts to break down. Many of us fail to realize that 70% of our immune system is located in our digestive tract. Once our digestion starts to struggle, the immune system starts to struggle and it begins to attack whatever is poisoning it. In this case, it’s whatever bacteria is over populating itself in your body and everything else that looks like it. The unhealthy lifestyle we live today makes it favorable for AS to emerge. GMO’s and processed food only make things worse. I have observed that those who benefit most from diet also suffer from other physical ailments like, yeast infections, UTI’s, sinus problems, catching the common cold more often, mild depression, mild anxiety, mood swings, insomnia, and more. Those who suffer from Ankylosing Spondylitis possibly triggered from PTSD experience very similar symptoms. It is important to point this out because not everyone has chronic anxiety as a root cause of AS. We all have identical symptoms but slightly different roots.
The brain makes physical changes according to certain thought patterns, behaviors, emotional responses and routines exercised. One of those changes is an increase in the size of the Amygdala, a part of the brain that registers fear and allows the body to go into panic mode to escape danger. This ability of the brain to change in physical shape and size is called neuroplasticity. The scary thing about developing certain thought patterns is that they become so habitual that eventually the person suffering from them can no longer identify them. In neuroplasticity the ground rule is very simple, neurons that fire together wire together. When you feel an emotion, think a thought, feel pain, or simply follow a morning routine there are neurons in the brain that fire to create that experience. Over time the more an experience is done the closer those neurons get. What starts as a conscious action that requires practice and attention eventually becomes a subconscious involuntary action that isn’t even noticeable to the person doing it. Now why is this important? Because chronic stress can be your neutral setting and you may be totally unaware of it. The body suffers from this vicious cycle by expressing stress physically in the form of inflammation, digestive problems, stiffness, aches, pains and more. The next cycle begins when the body starts to fall apart, the person starts to experience emotional stress from the worries that come from having chronic pain all the time. This stress only creates a more lopsided nervous system and a new layer of stress which leads to more physical pain and anxiety. As your mind changes in thought patterns and habits. Your body starts to express the DNA forms linked to disease. This is called a phenotypic expression and it basically means that you can have the genes (genotype) for AS but it doesn’t mean that you are doomed to develop AS. The element of internal stress is what triggers the physical (phenotype) expression of that gene. For example, HLAB27 is one of the genes responsible for AS and O.C.D (Obsessive Compulsive Disorder). According to my research certain genes that express physical degeneration (like HLAB27) are activated under the influence of the environment (lifestyle and psychological schema). This is what some may refer to as epigenetic or “nature via nurture”. Nature (your genes) determine what disease you get when the genes are activated and nurture (internal and external environment) determine if those genes should be turned on or off. Therefore in order to allow my body to heal I had to heal the gut, heal my stress with meditation and other forms of stress management exercises, and make peace with the idea of having AS. “Bad” genes are activated by a “bad” environment, by creating a “good” environment internally, I was able to turn off my AS symptoms. I had to clear my mind, take better care of my body by watching carefully what I ate, the exercises I did, my sleep habits and my stress triggers.
The amazing thing about all of this is that, when I was finally able to find balance in my mind, body and soul, the anxiety started to melt away. If my AS was rooted from yeast and leaky gut the AS symptoms would have left a long time ago. Unfortunately it was hidden very deep inside. I had already healed my gut by eating the best foods I could find. I had already corrected my body by doing pre-habilitation exercises, I had already healed most of my stress triggers through meditation and relaxation techniques. The final challenge on my road to recovery was understanding that my brother’s death and multiple traumatic adverse childhood experiences had affected me a lot more than I thought. I had no idea until now just how amazing and powerful the human body truly is. My journey was almost like solving a very complex puzzle and every step forward was more exciting than the last! Today I truly understand the ancient African proverbs that states, “There is no such thing as disease, there is only misbalance”. Finding balance in my life, mind, body and soul was my cure for my autoimmune disease. Something tells me that this may be the same for others. This essay is only telling the short version of this amazing journey. Otherwise this post would be an entire text book. The things I have learned, the people I met have all put me on the path that I am currently on. Health coaching for me is a lot more than helping people choose the best foods or the best exercises. To me health coaching is helping people find balance. So that the amazing machine we call the human body can do what it does best, heal itself, by itself.
Ralph Ruiz is a life and wellness coach in New York City who specializes in helping those living with autoimmune diseases and chronic pain live healthier and more prosperous lives. You can contact Ralph by visiting the “Contact Us“ section of www.ralphitness.com