Following my diagnosis and follow-up consultation, Dr Google became my focal point.
“Don’t confuse a Google search with your Consultant’s medical degree” a great sentiment and one I should have abided by. However, I didn’t, and Dr. Google became my worst enemy!
Everything that was ever written about Ankylosing Spondylitis that had a negative connotation, I could recite. The first 3 months were quite tough, coming to terms with a diagnosis for a condition you had never heard of and can’t even spell was difficult. It doesn’t sound very trendy either, “Ankylosing Spondylitis”, it created a vision in my mind of twisted, knotted bones and made me think of a dead tree.
Dr Google convinced me I would suffer from every symptom associated with Ankylosing Spondylitis. The ones that worried me the most included:-
- Iritis – I had already had Iritis 3 times so I was convinced I would end up blind and most certainly in my right eye
- Damage and restricted movement of my muscles and bones as the disease progresses. With some people it can result in severe disability and very limited movement in the spine and “some people” was obviously me.
- Chronic fatigue. Dr Google told me that this was caused by inflammatory markers called cytokines (whatever those are). Apparently, they are circulating in my body and fatigue is one of the more common symptoms of AS. Tiredness may get worse because the body is using a lot of its energy to keep this inflammation at bay. The effect can leave you feeling drained of energy. I was pretty drained already, so I envisaged this getting worse.
- Heart problems – “some people” (definitely ME) are at an increased risk of developing heart related issues.
- Osteoporosis is common in people with AS. As if my bones weren’t messed up already, Osteoporosis makes them less dense than normal. I guess my age was also a factor so I was bound to get that!
- Intestinal tract diseases
- Cauda Equina Syndrome (common in people who have AS) and can lead to paralysis and other severe issues. The condition usually requires emergency surgery; GREAT, look forward to that one!
- Amyloidosis – caused by the build-up of a protein called amyloid in the organs, amyloidosis can cause symptoms such as weight loss, and tiredness. Well at least the weight loss will balance out the weight gain from the medication!
- Nerve damage, such as tingling in the hands and feet
- Raynaud’s phenonomen
- Purpura (forget wearing sleeveless dresses) and more on Purpura in future blogs.
- The list goes on………
Dr Google also turns up at night when you’re asleep to remind you about them just in case you’ve forgotten. I have since been diagnosed with some of the above, but not nearly as bad as my imagination had led me to believe.
In addition to Dr Google, I also had problems at work. At the time of diagnosis, my husband Jamie and I were 5 years into running our own business. One of the reasons I had been referred to rheumatology was a deep pain in my lower back. Sitting at my desk had become very painful but, as my job involved sitting for long periods of the day, it was becoming a challenge. I had to rethink my entire office time to stop me constantly whinging about the pain.
Taking the prescribed medication was also difficult to accept. I did learn quickly that the yellow tablets, Sulphasalazine, stained our light oak dining table when you spilled water over them. Dr Google was also very helpful highlighting their side effects too, particularly the weight gain and hair loss.
Those 3 months were not great. It was also winter; my least favourite season and I have since observed that my pain is worse during the colder months. Often in the summer I am pain free for 2-3 months and I don’t get Raynaud’s which is also a bonus.
Eventually I concluded that “Dr Google” wasn’t doing me any favours and I needed to speak to a professional to source answers to the questions my “extensive” research had uncovered. Before I move on, I want to point out that I am very proud of our NHS and I am extremely grateful for the care I receive today. My Consultant Rheumatologist at the Royal Surrey Hospital is superb; however, they are time constrained which I completely understand so I decided to go for a one-off private consultation. With a private appointment, I felt I could take my time and go through my questions slowly to make sure I understood the implications.
Jamie did all the research and found a superb match, a practising Consultant in Rheumatology who also worked at the Defence Medical Rehabilitation Centre, Headley Court, Epsom. Amongst other things, he helped our Army personnel who had serious rheumatology challenges cope with army life.
Exercise has always been a big deal to me as it helped with my pain. The Rheumatologist Jamie found was also heavily involved with the Faculty of Sport and Exercise Medicine UK which has a critical role to play in improving the health of the nation through physical activity. For me, the fact that The Faculty concentrated on setting the highest standards for Exercise Medicine, Musculoskeletal Medicine and all aspects of Sport Medicine was a big plus. I was convinced that exercise, a strong mental attitude and a good diet were going to help me more than Dr Google and tablets, but I needed confirmation.
My next blog will cover the consultation and the start of my journey to self-help….
Living-with-autoimmune 