My name is Aaron and i am the face of AS and i stay in Singapore. I was diagnosed with AS when i was 20 years old when i experienced great discomfort starting from my lower back. Due to my job in the military, i had to be revocated to a lesser physically demanding position from then on medically downgraded to PES C9L3. I am positive with the HLAB27 gene.
However the pain really started to hit me most in 2009 when my spine started to experience to most pain and stiffness particularly in the mornings will last for several hours, it was so bad i’d find it hard to get out of bed. Not long after, i started to come out with my own “AS stretching regime”, i wld go to the pull up bars many times in the day just to use my whole body weight to release the tension and “crack” my spine as how a chiropractor might do it. It brought me some relief each time i do that but the pain would come back very soon thereafter.
In 2000 pain started traveling to my other parts of my body, including my fingers, my ribcage, my toes, eyes and MOST on my neck. Today my neck is also no longer straight, it tilts to the right. There were days my fingers could not even squeeze the toothpaste out as they were too painful at the joints.
I have tried all kinds of Ankylosing spondylitis treatment from NSAIDS to biologics like enbrel and humira and of course not forgetting sulfasalazine and methotraxate. However these drugs did not help me much and many times caused me to be falling ill so very easily.
The pain is with me every day but the pain level varies. I used to be very active in sports but no longer can manage long distance endurance sports or carry heavy loads. On a social level, i find it hard to predict myself when i’m feeling ok to join an activity or a bicycle ride that some times my friends may organize. It’s hard to explain myself as some of them may think i am creating an excuse for myself. So i no longer really explain the pain i go through. I don’t blame them though. Chronic pain and disease is a lonesome affair.
These days, i try to work on a cleaner diet to help minimise the pain and i’ve just discovered a book called “the perfect diet” which works on a refined approach to a paleo diet. Let’s hope it helps me and i will in turn will share this piece of information and good news to everyone in the world suffering the same disease or group of diseases as me.
There were a couple of days in the past 4 years that i felt much less pain and i was sooooo happy that i decided to go on a long long bicycle ride. I would give up anything just to feel pain free.
Staying strict to a Paleo diet is extremely hard and requires great discipline from me. It is also harder for someone living in this part of asia where almost everything sold outside has some form of starch.
I will stay strong and positive for my family and i will exercise whenever there is less pain and less tired.
Thank you for giving me a chance to share my disease.