As with many people who suffer from autoimmune disease, it was nearly 20 years before I was diagnosed with Ankylosing Spondylitis (AS).
My journey started in 1991 when I woke up one morning with an extremely painful right eye. I was commuting to Woking in Surrey for work, but I couldn’t drive as my eye was so sensitive to light, I had to keep it tightly closed. I took the train instead (a 2-hour commute) and by the time I arrived in Woking I couldn’t bear the pain any longer. By this time, I was also concerned about my sight.
Luckily, St Peter’s Hospital in Chertsey was close by and a work colleague drove me to their specialist eye department. I was diagnosed with Iritis, an inflammation of the iris, the coloured portion of the eye. It causes extreme pain, light sensitivity and sight loss and, unbeknown to me at the time, is often the result of a disease in another part of the body.
I was treated with steroid medication and wore an eye patch for 2 weeks until fully healed. What appeared strange to me at the time was that I also had an x-ray taken of my back. Whilst the Consultant explained that Iritis is often associated with other diseases in the body, my biggest mistake was not investigating this link further back in 1991. I have had Iritis 3 times since then, stories of which will appear on my blog over time.
From around 1998 onwards I suffered from significant neck and back pain. I have always worked in stressful jobs, mostly selling technology into banks. Success or failure is measured very easily in sales, you either sell or you don’t! I put my neck and back pain down to spending long periods of time sitting and the stress of working in a target driven environment.
Sometimes the pain was unbearable. My husband Jamie qualified as a sports therapist in 2001 and was a huge help in alleviating my pain with deep tissue massage. Jamie always felt I had an inflammatory issue and I was tested on a number of occasions for high levels of rheumatoid factor in my blood which is often associated with autoimmune diseases, but the test was always negative.
In 2008 I had very painful wrists and elbows, to the extent where I had difficulty using my arms. I was referred to a Rheumatologist who injected steroid and told me I visited the gym too much. She also advised that I stopped all exercise that involved “gripping”; thus, ruling out most of my exercise regime. The gym was a “saviour” for me so being told I had to reduce my time there was a big blow.
The other rememberable aspect of this particular trip to the Rheumatologist was that the steroid injection crystallised in one of my arms. The crystals cause pain and inflammation that is far worse than the pain and inflammation caused by the condition being treated. I was awake all night in so much pain I can’t even describe it! Needless to say, I have never visited this particular Rheumatologist again.
In 2008 and, in addition to the pain in my neck, back, arms and wrists, I also developed Raynaud’s. This is an autoimmune disease in which spasm of arteries cause episodes of reduced blood flow. My fingers and toes look like they have died when the Raynaud’s kicks in and it’s a real inconvenience when it occurs, especially if you need to use your hands!!
In 2010 I developed an unexplained swelling in my knee. I hadn’t injured myself and in addition to the swelling my knee was very painful. I was referred to a Consultant who x-rayed the knee and carried out an MRI scan. As there was no obvious injury, I was referred back to my good friends at Rheumatology to investigate unexplained swelling.
Luckily, or so I thought at the time, I met a different Rheumatologist who carried out more blood tests. This is where my story gets interesting! I was found to have the faulty gene – HLA B27. This is a specific type of protein that contributes to immune system dysfunction. The presence of HLA-B27 means that my white blood cells cause my immune system to attack those otherwise healthy cells. I have since found out that 90% of people with ankylosing spondylitis are positive for HLA-B27. However, during my 2010 visit, despite a positive blood test, the Rheumatologist did not take any x-rays and no further investigation took place.
I was finally diagnosed in January 2015 and my blogs highlight the challenges of living with Ankylosing Spondylitis.