March 20th, 2020
Ankylosing Spondylitis (AS) is an immune-mediated rheumatic disease that causes inflammation, pain, fatigue, stiffness and lack of mobility, among other things. AS is a form of inflammatory arthritis and it’s systemic, meaning it has the potential to affect the entire body. As with any chronic disease, there are some standard symptoms that many people with AS experience. With that said, the disease also manifests a bit differently for different people (never mind the fact that women often experience different symptoms than men do).
I know when I was first diagnosed with Ankylosing Spondylitis several years ago, I had trouble finding information on some of the less common symptoms, and that’s still the case. Even the Spondylitis Association of America, while a great resource, describes only some of the major and more common symptoms: enthesitis in the back, pelvic bone, SI joints, chest and heel; scar tissue and bone formation in the back and spine; hip and shoulder involvement with referred pain in knees; chest and rib involvement; eye involvement with uveitis; and jaw pain.
Ankylosing Spondylitis (AS) is an immune-mediated rheumatic disease that causes inflammation, pain, fatigue, stiffness and lack of mobility, among other things.
This site is valuable because it indicates the relative commonness of each symptom, and gives a brief description of each of the more common symptoms. Even so, it’s hard to get a sense of what someone experiences with each symptom, and what that means for their daily lives. Even though I’ve been living with an AS diagnosis for four years now, I still have lots of questions and spend my share of time online searching for answers and anecdotal information.
My Experience with Ankylosing Spondylitis
With that in mind, I thought I’d offer some of my own experiences with my specific Ankylosing Spondylitis symptoms. The pain, inflammation, and fatigue I experience often affect simple daily tasks and activities that I otherwise wouldn’t think twice about. But like I said previously, different people experience AS differently, and my symptoms may be more mild and manageable (or severe, for that matter) than what others may experience.
My Hands: Food Preparation
Even though my meds do a good job of managing the inflammation, the nature of some tasks quickly ramp up inflammation and pain in particular joints. My hands, often more specifically the first two knuckles and fingers on my right hand, are frequently affected by my inflammatory arthritis. Simple tasks that involve grabbing or holding thin objects with these two fingers, such as using a key to unlock a door, writing with pen and paper, and especially preparing food, can be difficult and painful.
Now I love to cook, but recently I’ve begun eliciting my wife’s help when a meal requires chopping lots of vegetables or mixing ingredients together before baking. For me, holding and applying pressure with a knife, or grasping a spoon while mixing, creates this burning sensation in my knuckles, quickly followed by a feeling of weakness and pain.
My Lower Back: Sitting at a Restaurant, Bar, or other Outing
My wife and I like to get out for dinner once or twice a week, and we also enjoy attending sporting events or other social gatherings. However for the past year or two, I’ve been finding it increasingly difficult to sit at a restaurant or event venue for longer than an hour. This is especially true if there’s no back support or cushion on the seating.
When we’re out for dinner, I notice myself start to squirm in my seat after about 30-40 minutes. The burning pain I feel begins in my lower back, but then gradually progresses up my spine, leaving me with a general discomfort and an incessant urge to get up and move. At times, the pain becomes so intense that I need to get up and walk around to get a little relief.
There are steps I take to minimize this sort of back pain, though. First, I bought a memory foam seat cushion that I keep in my car and carry with me to sporting events or other outings. Second, I request booth seating at restaurants because booths are more likely to have cushioned seats. Third, if I know we’re staying somewhere for longer than an hour, I make sure to get up and move around several times.
My Hips: Walking and Hiking
Many of my hiking posts detail the pain and mobility issues I face when hiking, especially in my hips. You can find the most detail about my hip issues in my post Striking Views Without the Strain of Elevation Gain - Hike Placitas. Suffice it to say that walking about 2 miles or more causes pain and limits the mobility of my hips. I believe it’s synovitis, maybe with a touch of enthesitis--well basically plain old inflammation. The kicker is that the pain and inflammation don’t cease once I stop walking. Instead, the pain and tightness linger on while sitting around at home, and when bad enough, when laying in bed at night. And the hip, being such a large joint, isn’t as easy to ice or heat or apply pain cream to as, say, a knee or hand!
My Feet: Shopping
My feet have been a lot better lately because I refuse to wear any other shoe besides my Brooks sneakers. So, if you’re reading this and also have inflammatory arthritis in your feet, and you haven’t tried Brooks, I don’t know what you’re waiting for!
Even with my Brooks, going to the mall for a few hours or spending an afternoon at several different stores is hard on my feet. The symptoms are similar to the pain and inflammation in my hands, except all knuckles on both of my feet are affected, as well as both of my heels. When I’ve been on my feet for too long, my feet begin to get hot and swollen, and if I ignore these initial indications, both of my feet begin to throb and ache.
I’ve become proactive when it comes to inflammation in my feet. If I know I’ll be out on my feet for a good portion of the day, I apply an NSAID pain relief cream before leaving the house. If the pain is bad, I re-apply when I return home. In more severe instances, I’ll also soak my feet in warm water and Epsom salt.
My Eyes: Sunlight
I have uveitis, which is fairly common for those of us with Ankylosing Spondylitis. I’m lucky because I’ve had relatively few uveitis flares since my diagnosis. Honestly, I don’t know what causes these particular flares so it’s hard to predict when one might spring up. When the uveitis does return, it’s impossible to ignore: I get intense pain in and around my eyes, and almost any amount of light produces a severe stabbing pain.
When my uveitis flares, I utilize my steroid eye drops and remain in a dark room until the flare passes. Besides uveitis flares, I find my eyes are a bit more sensitive to sunlight in general. To protect them, I always wear a pair of polarized sunglasses while spending time outside and driving.
What I’ve described here are some of the more common issues I deal with on a daily or weekly basis without a flare up. I hope sharing some of my experiences may be useful to other fellow Ankylosing Spondylitis warriors as you seek out information and common ground with this frustrating disease!
-Jessica