Ankylosing Spondylitis

Carrie Kellenberger Ankylosing Spondylitis

My Ankylosing Spondylitis Story [Updated June 2020]

My Ankylosing Spondylitis story begins in 2009 but the background leading up to my first diagnosis started long before that.

My health journey in Taiwan began in 2007, but I had obvious symptoms in Canada at age 24 that were dismissed regularly by doctors when I sought medical attention. I’m 45 as of June 2020.

Back then, I was working at a jewelry store in Ottawa, Canada. I was on my feet all day, and I suffered low back pain, problems with my shoulders, mysterious swelling, and general malaise. Like every young person that age, I led a fairly active social life. But I always felt that there was something wrong. After all, I didn’t look sick. I just felt awful all the time.

What is Ankylosing Spondylitis? What is Spondyloarthritis?

 

The following information about Ankylosing Spondylitis is from Medicine Net:

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.  

Symptoms of AS vary greatly among patients, especially between men and women. Many patients go years without a diagnosis. The average amount of time for women to receive a diagnosis is 10 years, but advocates are working hard to narrow the gap. I had classic symptoms of AS for over a decade before I got my diagnosis. No one should ever have to wait that long.

For those of you who suspect something is wrong, and believe me, you will know something is wrong if you have AS, I recommend visiting the Spondylitis Association of America to view their video on how to assess your chronic back pain.

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 

We first realized that there was something really wrong in 2008. All year, I had been experiencing stabbing pain in my calves and legs. My knees swelled up to the size of softballs regularly. My back was on fire. I was waking up in the morning in tremendous pain. I was always stiff and everything hurt. The pain was non stop and unbearable.

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. In February 2009, two months after our ceremony, I woke up with swollen knees and matchstick legs. My legs felt like they were going to snap in half at the knee. I couldn’t hold my own body weight and my back felt like a corkscrew.

Every athlete knows RICE protocol and that is what I did. Rest, Ice, Compression, Elevate. I spent two days doing that and my knees kept swelling.

Autoimmune Flares

The fever hit on Saturday night and by Monday morning, it was so high, John decided we needed ER attention. We went to Taiwan Adventist Hospital because we knew they had a good foreign inpatient program. I remember sitting in a wheelchair in the ER and I couldn’t stop moving. Every position was excruciating. It felt like if I didn’t move, I was going to die. I’ve never felt pain that bad before.

They drained my knees and then we waited. I could not stand for a week after that. John helped me to the bathroom and back to bed, but other than that, I stayed flat on my back. During that time, Adventist got back to us with my lab results. They suspected I had something called Ankylosing Spondylitis, but they didn’t have anyone at Adventist who could help me. They referred me to a rheumatologist at National Taiwan University Hospital (NTUH).

That night I called my mom and she said, “Thank god it’s not Rheumatoid Arthritis!

Little did we know what was coming for me.

We moved to NTUH where I spent the next three years being treated. My rheumatologist started me on Plaquenil first and I reacted to it. (Not an option for me.) Then we tried sulfasalazine for inflammation, but my rheumatologist felt it might be weeks or months before it started working. I spent the rest of 2009 hobbling around on a cane and keeping my knees wrapped. The swelling never went away completely until I started anti-TNF blockers.

We spent our honeymoon in Singapore four months after my diagnosis. I used my cane and a wheelchair for most of that trip.

Can you imagine putting your feet on the floor after you wake up and feeling like you’re standing on glass? Can you imagine feeling like you’re walking on glass all day?

That’s what I was experiencing.

The pressure on my lower back was horrible. At times, I wake up and can’t lift my arm or turn my neck. It felt like I was being slowly crushed. Now I’ve learned that this is what AS does. Your bones calcify without intervention and they fuse.

My legs often feel like someone is stabbing them with a knife. Then they go numb. Then my feet go numb.

And of course, my back pain was out of control.

Pain makes you exhausted. You’re fighting it every day. There is no energy for anything else.

Chronic Pain Awareness

It amazes me to think of the excuses I was able to make for my illness. It amazes me that I felt like crap for so long and was told repeatedly 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. ~ Carrie Kellenberger

It’s awful knowing that I allowed experts to convince me that the pain was a normal part of life. Now I know that most doctors aren’t educated on what I have. I’ve learned to advocate for myself. My husband advocates for me when I can’t.

I’ve also learned I’m the expert. My docs now understand this. I hope they are learning from me.

And while my new rheumy believed me, others did not. At that time, I had several doctors and people weighing in on what was happening. I heard things like, ‘You’re too young to experience this.‘ ‘It can’t be that bad.’

People called me a hypochondriac. But guess what?

 

After My Ankylosing Spondylitis Diagnosis

Since receiving my AS diagnosis in 2009, I’ve slowly stopped doing everything I loved. I had a a career in music and that’s gone. I stopped dancing, running and working out. I was a regular at the gym and by 2014 I stopped going completely. We had to stop traveling and backpacking. Eventually I became too sick to hold down a full time job. Luckily, I work from home, otherwise I wouldn’t be working at all.

Today, I’m mostly housebound. While I was waiting for doctors to figure out which med was going to work best for me, I lost a lot.

By 2015, based on my test and lab results, it was clear I needed to be on anti-TNF blockers, but my health insurance in Taiwan doesn’t cover it. It took another four years to find a doctor who agreed I needed this type of medication. I started in November 2018 and it has helped keep me out of my wheelchair, but I pay for it out of pocket. My medication each month costs more than my rent. My new normal had to be accepted.

During all of this, I received other diagnoses: fibromyalgia, MECFS, IBS, my migraines got worse, and today there is no part of my body that isn’t affected by severe health issues.

When you finally know you have Ankylosing Spondylitis…

It’s a relief to know what’s going on. On the other hand, figuring out how to deal with all of this has been rough. I cry a lot. I get angry and frustrated easily. Pain and trauma have affected my mental health in many ways.

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.

My quality of life is ok. I’m not in a wheelchair full time yet, but every year that has passed has meant giving up more. We discovered that I had other autoimmune issues after I got my AS diagnosis. We also learned that my family history, especially immediate family, is full of autoimmune illness. Inflammatory arthritis, Graves, Sarcoidosis, Ulcerative Colitis, and more.

I’ve maintained 30 minutes on my feet each day without any adverse effects. Anything above that causes a crash, so I’ve learned to pace for pain management. Pacing is key and it will never change.

Ten years after my Ankylosing Spondylitis diagnosis and I’ve learned a few things. The best thing you can do is stay vigilant, never be afraid to advocate for yourself, believe in yourself, and don’t be afraid to move on to another doctor if someone dismisses your pain!

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.

My Story with Ankylosing Spondylitis and Chronic Pain
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9 thoughts on “Ankylosing Spondylitis

    Claire

    (June 1, 2020 - 10:53 pm)

    Thank you for sharing your story Carrie. I have heard more about AS recently, but this is such an informative account. I’m glad you find pacing helpful to help manage symptoms.

      Carrie Kellenberger

      (June 2, 2020 - 11:35 am)

      The Spondylitis community has really been pushing for awareness for the past decade, so it’s out there. Ankylosing is more common than multiple sclerosis (MS), amyotrophic lateral sclerosis (ALS) and rheumatoid arthritis (RA) combined! I just find that so astounding, and yet hardly anyone knows about it.

      With AS, we say that ‘motion is lotion’. It’s best to keep moving and keep stretching. I do my best to pace and get my steps in, but with ME and Fibro, ME especially, that really complicates thing because patients like me don’t respond to GET (Graded Exercise Therapy). The goal is to lower the neuroinflammation with ME first and then hope we can resume more activity, but most of us don’t really ever go back to what we were doing before we got sick. I live my whole life through a very strict set of rules that are designed to keep me within my limits, but it’s amazing how a little extra excitement or a few extra steps can throw my whole week off.

    Shruti Chopra

    (June 2, 2020 - 2:48 am)

    “It’s awful knowing that I allowed experts to convince me that the pain was a normal part of life. ”
    – I find it really weird that this happens – I have never been able to understand why.

    Sometimes, I believe many doctors aren’t curious enough to investigate the challenges their patients face especially when the diagnosis isn’t obvious. Even my doctor says so – she tells me a doctor needs to be inquisitive enough to search for the answers. If they can’t find the answer then they need to have the ability to recognise that and find you someone who can rather than dismissing you the patient.

    But coming back to everything you have shared – it’s opened me up to another condition I didn’t know existed. It’s really sad that you’re going through so much – just want to wish you a whole load of strength and way more good days than ever! Big hug 🙂

      Carrie Kellenberger

      (June 2, 2020 - 11:00 am)

      Thank you so much, Shruti! I agree. I also think they saw an 18-24-year-old woman who had back pain that was more suggestive of a elderly person and back then (the 90s), no one knew AS affected women.

      AS has traditionally been known as a man’s disease and you’ll still see a great number of sites like Wikipedia, for example, that refer to it as a rare disease that affects men. In the past 10 years, advocacy has really changed and we’re started to see a lot more info and we’re learning that, of course, women have completely different symptoms. We experience more widespread pain and a higher burden of pain, so first I had to break through the ‘you’re too young’ subset of thinking, then on to the ‘you can’t have this because you’re not male’ subset of thinking, to the docs who believed it was in my head. (And we all know how often women hear that from doctors.)

      It really is infuriating when I think about it! Thank you so much for stopping by. It’s so good to have another friend who us understanding and supportive! Sending you boatloads of spoons!

    Katie Clark

    (June 4, 2020 - 6:41 am)

    Thank you for sharing your story. I’m in awe of all the things you’ve been through and are still strong and vocal-showing the reality of what you can handle now, but still have purpose. Sharing your journey helps others find their own way.

      Carrie Kellenberger

      (June 4, 2020 - 3:52 pm)

      Katie, thank you so much! That really means so much to me. These last few years have been really hard. Sometimes I feel like I am showing the most boring things, but that’s the reality of my life. I really can’t do much. (I can still pick up my fat cat though!) Gentle hugs to you, friend.

    Sheryl

    (June 4, 2020 - 8:28 pm)

    Thank you for sharing your story, Carrie, even though it is so painful. Know that such experiences shared are never wasted. People who are in the same boat can find solace in it, and it helps to raise awareness in society at general. Sending gentle hugs.

      Carrie Kellenberger

      (June 6, 2020 - 2:50 pm)

      Thank you, Sheryl. It means a lot to me to know that I have someone like you and such a great community of chronic illness advocates rooting for each other. Spoons and gentle hugs!

    Mairead

    (October 17, 2020 - 1:38 am)

    Wow what a journey! I can’t believe how much you’ve had to go through with this. Thanks for sharing. I had never even heard of your condition (got to be honest, I’m still not going to try spelling it 😂) until I came across your blog, so it really is effective at raising awareness.

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