A.S. Face 0986: Aidan

Face 986

My name is Aidan, I’m from Ireland, I’m 30 years old, and I work as an English teacher in South Korea.

My first AS symptoms came about 8 years ago in the form of irritation in both eyes.  I went to several specialists, and was told it was chronic conjunctivitis.  No drops ever worked so I just let it run and it has came and went ever since. Then about two years ago, I was working out a lot and started to feel a lot of muscle tightness and tenderness in my back.  I dismissed it as gym related and got on with it.  However in March 2012, it blew up on me.  I had severe tightness in my back and shoulders and found it very difficult to stop stretching my left lat muscle or hold my shoulders back, or be remotely comfortable. For a year I went to different hospitals, saw different “specialists”, and tried a whole range of different treatments, from muscle relaxers and physiotherapy, to acupuncture and yoga.  I stretched every day and tried to continue working out.  Not one doctor ever took a blood test, most dismissed it as normal muscle pain, and some even said it was in all in my head.

Over the course of that year, the pain which had originally felt like it was focused on my back lateral muscles had spread.  It primarily affected my left shoulder and upper back, my lower back, and my right hip and buttock.  Then on bad days I would feel extremely sore across both shoulders, my neck, and all the way up my spine.  Morning stiffness became an issue and my ankles would take a few strides to loosen out in the mornings.

In spite of being a lifelong asthma sufferer, I really began to struggle with chest difficulties by February of this year.  I felt extremely tight all the time and developed a chronic wheezy cough that felt more spasm driven than anything.  I was prescribed meds and new inhalers but none of them worked.

In March I was told about a doctor who came pretty highly recommended.  I went to him, explained my symptoms, and he immediately asked to take blood samples.  I tested positive for the AS marker HLA-B27, and was finally diagnosed with Ankylosing Spondylitis.  He put me on a cocktail of nsaids and other drugs, and while there was some initial pain relief, my cough and chest problems persisted.  A couple of more referrals and a couple of more hospitals later, there was still no improvement, so I was eventually referred to a rheumatologist.  I remember walking into the rheumy’s office that first day, and the first thing she did was a physical examination.  For all the doctors I had been to, I realized that not one had ever given me a full physical once over.  I left feeling so overwhelmingly relieved to finally have someone who knew what they were talking about, that I could barely hold it together.

It’s now been three months since my first visit.  I am seeing a rheumy and a pulmonologist on a regular basis.  I still have the cough and am barely managing to suppress it for twelve hours at a time.  I’ve had more tests than I can remember, and they still can’t make any certain diagnosis.  My right sacroiliac joint has fused and causes regular pain.  My left shoulder and elbow hurt a lot, I’m always stiff and tight, I can’t sit or stand for long intervals at a time.  My lower back, right hip, pelvis, both ankles, and my neck, all cause varying degrees of pain at different times on different days.  I take more medication than I can keep track of; nsaids, anti-arthritis medications, anti-rheumatic drugs, cough suppressants, antacids, muscle relaxers, pain killers, and more.  I still hurt a lot, I worry, I stress, and it feels like I work all the time, just to pay the bills.

But it’s not all bad, there are plenty of good days and I try to stay confident that I’ll eventually get some relief and find a course of treatment that works.  I also have a girlfriend who is incredibly kind, supportive, and understanding, and without her, these last few months would have been so much more difficult.  I still go out and do things, I laugh all the time, and I enjoy the things in life that make me happy, because I’ve found that there’s nothing like the bad days, to make me appreciate the good days.

South Korea, Asia

3 Responses to “A.S. Face 0986: Aidan”

  1. Dear Aidan,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  2. Hi Aidan, my name is Cindy and I was diagnosed with AS when I was 16 and now I am 22. I just wanted to let you know that I went thru many of the same things you are going thru. My struggle started with a cough and severe tightness in my chest (I too have asthma) and struggle with my eyes, which my doctors told me was uvitius. I had a very difficult time getting diagnosed and now my L-4 and L-5 disks are fused, also my right sacolliaic joint is beginning to break down. I commend you for still living your life and pushing forward. Keep pursuing your dreams and if you have any questions about anything feel free to ask. Also what part of South Korea are you in? My roommate in college just moved there to teach English in the middle of August.

  3. Thanks so much for sharing your face and your story.

    Hey Aidan, are you in Seoul? I’ve had AS since 2000, and have been able to manage very well without meds. If you’re in the area, we should meet up some time for a chat! I’ve never actually met anyone else with AS in person before…


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