It’s a painful, progressive form of inflammatory arthritis. It mainly affects the spine but can also affect other joints, tendons and ligaments.
Other areas such as the eyes and bowel can also sometimes be involved.
- Inflammation occurs at the site where ligaments or tendons attach to the bone. This is known as enthesis
- The inflammation is followed by some wearing away of the bone at the site of the attachment. This is known as enthesopathy
- As the inflammation reduces, healing takes place and new bone develops. Movement becomes restricted when bone replaces the elastic tissue of ligaments or tendons
- Repetition of this inflammatory process leads to further bone formation and the individual bones which make up your backbone (vertebrae) can fuse together
AxSpa places a huge physical impact and psychological stress on patients which can disrupt every aspect of their life and its quality including mobility, sleep, work and relationships. It is a poorly understood disease that causes patients to worry for their future.
Here is Matthew’s story
Mathew Fah was just seven years old when he developed persistent pain in his ankle. And the pain never went away.
After a host of blood tests, X-rays and doctors’ visits, the little boy whose knee was also painful, was finally diagnosed with Juvenile Rheumatoid Arthritis (JRA). The prognosis couldn’t have been worse. His parents were told that their son would be wheelchair-bound by the time he turned 16.
“Being so young, I did not really understand this, but it was a huge stress for my parents.”
Matthew’s diagnosis meant that he couldn’t participate in many sports, play with his friends or live a normal life. “I had to take a handful of pills every day, the worst of course, Cortisone.” His diet also changed drastically.
Fast forward a few years. While the pain and flares began to decrease, they didn’t go away entirely. During his high school years, the pain flares had decreased to about once a year. But his constant was persistent back and neck pain.
“Going to the doctors was now second nature, but my back and neck pain was never linked to any auto immune condition.”
Regular visits to the physiotherapist helped. He was 16 years old when his GP told him the wonderful news that he was in remission. A delighted Matthew was able to join his friends and play the sports he loved.
As the years advanced, he learned to live with back pain, but then he began to experience pain in his hips and ribs. “The pain was so bad that I was unable to walk or breathe. I feared each time I had to sneeze, cough or do any sudden movements.”
After many tears and sleepless nights, Matthew feared that it was something related to his diagnosis as a child, but he was too scared to do anything about it.
“The thought of living my life like I had done as a child persuaded me to not seek any medical help.”
Cortisone injections for pain became his normal, as did visits to the physiotherapist and chiropractor.
It was on Christmas morning in 2013. when he woke up with a burning pain in my big toe. “Initially, I thought I had been bitten by a spider. It was red, swollen, and sore to the touch.”
His girlfriend insisted that he see a doctor. At the age of 27, he was diagnosed with gout. He searched for remedies on Google, but the pain never subsided.”
So it was back to the doctor again. “My GP had treated me all my life. He knew my history with JRA and had diagnosed me with Rheumatoid Arthritis. I was just not happy with this diagnosis.”
Matthew decided to get a second opinion. While his blood tests didn’t show any rheumatoid factor, the Gout diagnosis was confirmed despite normal uric acid levels.
The pain became steadily worse. It moved from his toe into the arch of his foot, heel, knee, hands and fingers. “I could hardly walk or hold anything in my hands. Not so great for a Personal Trainer.”
At this point, he was diagnosed with Sero-negative Rheumatoid Arthritis: All the symptoms of Rheumatoid Arthritis, but just no blood markers.
Then a good friend of mine recommended that he consult with a Rheumatologist. It took Matthew a month to get an appointment.
The Rheumatologist took the time to listen, perform her assessments and study Matthew’s extensive medical history. “Then she sat me down. With certainty, she said she was almost 100% sure that I had Ankylosing Spondylitis.”
Matthew went for all the previous blood tests, but this time, the test included the HLA-B27 gene. X-rays on his back, neck and hips followed which showed no fusion of his neck or back, but there was some fusing in his Sacroiliac joints.
The HLA-B27 came back positive. Diagnosis: Ankylosing Spondylitis.
“The nice thing about my Rheumatologist is that she is very careful with her prescription of medication. She did not want to rush straight to biologicals, but rather start with methotrexate and NSAIDS.”
It took Matthew a couple of months to find the right dose, as well as an NSAID that worked. He was put on Salazapyrin at a later stage.
“Medication is only one aspect of treatment and management of this condition. Exercise and diet are major contributors to trying to live a pain-free – or should I say a pain-managed life.
Fortunately, Matthew had a lot of experience in the fitness field. “It is what I do for a living.”
It took some time to get back into training. He had to experiment and find what worked. His motto as a personal trainer had always been ‘no pain no gain’ and to lift the heaviest weights he could lay his hands on.
“This had to change as much as I didn’t want to.” After becoming increasingly frustrated about the fact that he couldn’t get back to the same level of strength he had in the past, he was forced to find some other form of exercise that would be more beneficial for his body and mind.”
After a lot of trial and error, he finally found something that worked. Matthew became a rock climber.
“I believe that climbing has helped me manage the effects of AS to a large degree. Not only has it helped with being stronger and more mobile, but it has also had a great effect on me mentally. AS has taken me to many dark places and the climbing helps take my mind off it.
“My journey has taken me many places, emotionally and physically. But it is a part of my life that will never go away. I have accepted this, and I will carry on.
“I don’t know what the future holds, but I am going to enjoy my life to the best I can.”
- Finding Purpose in the Pain - November 15, 2022
