Well, where does one begin?
Yes, things have been moving slowly over here in Taiwan. I haven’t felt much like blogging lately. After two years of being unable to convince doctors that there is something wrong with me, I’ve finally had success.
I was diagnosed with Ankylosing Spondylitis in February 2009. Since then, I’ve had to cut back on all my extracurricular activities and classes. I’m focusing on finding some way to manage the pain and fatigue that comes with this inflammatory type of spinal arthritis.
Ankylosing spondylitis is a form of chronic inflammation of the spine and the sacroiliac joints. Chronic inflammation in these areas causes pain and stiffness in and around the spine. Over time, chronic spinal inflammation (spondylitis) can cause the vertebrae to fuse together, ultimately leading to loss of spine mobility.
AS is also a systemic disease. It can affect other tissues throughout the body. It can cause inflammation in or injury to other joints away from the spine, as well as to other organs, such as the eyes, heart, lungs, and kidneys. In my case, I’ve had aching back pain for years, as well as problems with my shoulders and knees.
Symptoms of Ankylosing Spondylitis, now referred to as Axial Spondyloarthritis (axial SpA), vary greatly among patients.
Patients can go for years without being properly diagnosed. I’ve experienced classic symptoms of AS for over ten years. The problem is that when I was exhibited symptoms in Canada, the disease wasn’t well known and doctors figured I was too young to have something so serious.
In Taiwan, I was the first patient to start advocating about Ankylosing Spondylitis in English. I am always amazed by the number of people that reach out every year to say they also have AS and they need information for treatment in Taiwan.
Could Your Chronic Back Pain Be Caused by Ankylosing Spondylitis?
The Spondylitis Association of America has an informational video on this page that walks you through the ins and outs of getting a Spondylitis diagnosis. The SAA is the reason why I was able to get help so quickly in Taiwan once we knew what I was dealing with.
My Ankylosing Spondylitis Story by Carrie Kellenberger
For more than a decade, I was waking up in the morning in agony. I was stiff, unable to move, my body would be throbbing everywhere.
It took ages for me to get out of bed and start moving. I had many days when I was unable to walk because my back and legs hurt so bad. At other times, I’ve woken up and been unable to lift my arm or turn my neck.
I get tired easily, and there are days when it hurts to sit. I get severe stinging pain in my lower legs. My legs felt like someone was stabbing them with a blunt knife and then, after a while, my legs would go numb. I had swelling in my knees that would go up and down every four or five days.
My back pain was out of control.
When I think about how bad it is and how long I thought it was due to something else, I feel so much regret. If I had been treated sooner, maybe things would be different for me now.
It amazes me to think of the excuses I was able to make for my illness. It amazes me that I’ve felt like crap for so long and was told repeatedly by many doctors that what I was experiencing was normal.Acute, chronic pain is not normal. It's a sure sign from your body that something is not right. Click To Tweet
I tried not to complain too much or too loudly. I was accused of being a hypochondriac. People trivialized my pain and made me feel like I was going crazy.It was NOT in my head. Ankylosing Spondylitis was right there all along. My silent partner in pain. My torturer was me. My body was the betrayer. Click To Tweet
Now I’m finding out that I’ve had Ankylosing Spondylitis for years and I was untreated for it, which means the damage was already done by the time the doctors figured out what was going on.
My life would be different if we had caught it early. Maybe I’d still be able to run and dance. Maybe I wouldn’t be locked into a wheelchair or have to depend on a cane so much if we had found it earlier.
It’s awful knowing that in a desperate search for answers, I convinced myself that the fear and the pain was just a normal part of life that everyone experiences because doctors told me there was nothing wrong with me.
All of this started in my early 20s. I was working at a jewelry store in Ottawa, Canada as a store manager and saleswoman, and I suffered low back pain, problems with my shoulders, mysterious swelling and all-around feelings of malaise.
Like every young person that age, I led a fairly active social life, but I always felt that there was something wrong. At times people made me feel like I wasn’t allowed to feel this way or they thought I was making it up.
I remember showing up at the airport one morning to meet my boss because he was flying me to Toronto to deal with a new store opening.
It was an early morning flight, I was super-stiff and feeling very nauseous, and I remember him looking at me in the airport and rolling his eyes. ‘She’s sick again? Has she been out all night?‘
I could just see the accusation in his eyes. He wanted to know how much of a bender I’d been on the night before.
I’ve noticed this reaction is a common reaction that many patients encounter. Disbelief. We look normal, so how can we possibly be sick?
How could someone so young be in that kind of pain with no visible illness or injury?
Since moving to Taiwan, I’ve experienced pain in some form or another every day. At first it was mildly annoying. I had pain in my back, shoulders or legs, and I felt stiff. I also experienced unexplainable swelling in my limbs.
Within two years, I was waking up in extreme pain every other day. Some days, I couldn’t get out of bed.
John and I first realized that there was something really wrong with me in 2008. All year, I had been experiencing a stinging pain in my calves that felt like bee stings. My knees would swell up and go down, sometimes reaching the size of softballs. My back felt like it was on fire.
It didn’t matter whether I was sitting, lying down or standing, the pain was intolerable. I cried every night going to bed and then I’d cry again when I woke up.
We got married in December 2008 and in February 2009, less than two months after we got married, I woke up to horribly swollen knees. My back felt like it was twisted. I couldn’t stand up or sit up.
I developed a fever that lasted all weekend and John finally decided we needed to go to the ER. They drained my knees there and I wasn’t able to walk for about three days. I remember sitting in a wheelchair in the ER and I kept moving in my chair. My husband asked me to please stop moving, but the pain was so bad, it felt like if I didn’t move, I was going to die. I’ve never felt pain that bad before.
My Ankylosing Spondylitis Story – FINALLY A DIAGNOSIS
Taiwan Adventist Hospital got back to us within a matter of days with results from my labs and they referred me to a rheumatologist at National Taiwan University Hospital (NTUH).
They suspected I had something called Ankylosing Spondylitis, but they didn’t have anyone at Adventist who could help me, so we moved to NTUH where I spent the next three years being treated. I remember calling my mom to tell her and she said, “Thank God it’s not Rheumatoid Arthritis!”
Little did we know that it was just as insidious and disabling as RA.
I started taking Sulfasalazine to help with the inflammation, but my rheumatologist felt it might be weeks or a few months before the medicine kicked in and started helping. I spent the rest of 2009 hobbling around on a cane and keeping my knees wrapped up.
We spent our honeymoon in Singapore four months after my diagnosis, and I used my cane or a wheelchair for most of that trip.
In one way, it’s a relief to finally know what’s going on. On the other hand, figuring out how to deal with all of this has been rough. I cry almost every day. I get angry and frustrated easily.
My life is full of good days and bad days. I look forward to the good days and fill them with as much joy and fun as I can. I deal with the bad days when they come along. This isn’t going to stop me from living my life to the fullest extent.
My quality of life is ok. Every year that I’ve had this, I’ve been able to do less and less activity. This isn’t all related to Ankylosing Spondylitis. I was diagnosed with several other autoimmune issues after I got my AS diagnosis, including fibromyalgia and MECFS, which I found out about five years later.
When we put our family history together, we realized everyone in my immediate family has some type of autoimmune illness, and inflammatory arthritis goes back on both sides of our family
I still can’t walk for more than 30 minutes a day, and I’ve learned that this has more to do with fibromyalgia and MECFS than Spondylitis. With regular exercise, Spondylitis should improve and I have found that if I get up and take. a short walk, the pain and stiffness subsides faster. But I’ve learned that pacing is key to living with these illnesses and not to surpass 30 minutes a day otherwise I end up in ER.
The lesson in all of this is to listen to your body and don’t be afraid to look for and pursue answers. No one knows your body better than you do.
Make sure you watch the video I listed above on the Spondylitis Association of America website if you have had chronic and persistent back pain for more than three months.
The best thing you can do is stay vigilant, keep looking for answers, and don’t be afraid to move on to another doctor if someone dismisses your pain.