July 1, 2022
When I was first diagnosed with Ankylosing Spondylitis, I had so many questions about symptoms, disease progression, treatment plans, and much more. Above all else, I wanted to know what my day-to-day life would look like with AS. In other words, would my symptoms be ever-present like a permanent tattoo, or would they ebb and flow with internal factors and external influences?
For many spondies, symptoms come and go based on activity level and external forces. But this disease, like many other chronic illnesses, takes as many disease courses as there are individuals affected by it. So while I experience my disease one way, you may have a slightly different set of symptoms, disease progression, or disease triggers.
With that said, I’d still like to share my experience with Ankylosing Spondylitis flares in the hopes that my experience may help others better understand and identify their own flares.
Types of Flare-Ups
A ‘flare-up’ or ‘flare’ is an increase in disease activity, which also means an increase in symptoms. Generally, Ankylosing Spondylitis flare-ups can be separated into two categories: localized or generalized flares.
Localized Flares: these are flare-ups limited to one area of the body, often the lower back, but may affect any area where you experience symptoms. Lately I’ve been experiencing localized flares in my ribs, but earlier in my disease localized flares almost always occurred in my lower back.
Generalized Flares: this type of flare-up is more widespread and can include pain in multiple areas of the body as well as increased fatigue levels. Generalized flares tend to put me down for the count, sometimes just for one day, sometimes for multiple days or weeks.
Whether local or general, you’ll be at a great advantage if you know the signs, can identify an upcoming flare, and begin a treatment regiment before the pain becomes debilitating.
Tell-tale Signs of a Disease Flare
Unfortunately, our spoonie bodies don’t announce when we’re on that road headed for a disease flare-up. Or do they? While I still have trouble recognizing the warning signs of an oncoming flare sometimes, my body certainly gives me my fair share of signs and signals. Perhaps I just need to pay better attention!
When I’m staring down a flare-up, the most noticeable sign is increased soreness. This sensation is not necessarily the pain of a flare, just a general soreness similar to muscle aches, but more widespread. I also become easily fatigued with simple day-to-day activities that would not otherwise cause fatigue.
When a flare is in full swing, my most common symptoms are increased pain (local or general), increased joint stiffness, and extreme fatigue–the type that does not improve with sleep or rest. Others report their symptoms mimic those of the flu, which include fatigue, soreness, but also a fever.
My Experience with Ankylosing Spondylitis Flares
I struggled through my first flare-up several months before I’d even heard the words “Ankylosing Spondylitis.” My partner and I had just made a 30-hour road trip from Texas to Massachusetts and my body was stressed. Shortly after we arrived at our destination, I began to feel sick with what I thought was the flu. In fact, this was the first and only time I experienced a flare-up accompanied by a fever. During this flare, I slept on and off for four days and three nights, convinced that my body just needed sleep to overcome the illness. Finally, the flare outran it’s course.
"But this disease, like many other chronic illnesses, takes as many disease courses as there are individuals affected by it"
Since that first flare, I’ve been on a treatment plan for AS that has lessened the effects, duration, and frequency of my flares. Many of my flares are localized now, consisting of increased back pain or prolonged rib and breastbone pain. On occasion, I push my body too far and wind up in bed with unbearable full-body pain, but, with the help of prednisone, those more severe, generalized flares recede within a day or two.
When managing a flare, I find it important to utilize all the tools in my arsenal. Corticosteroids help reduce inflammation and therefore reduce symptoms, while extra rest helps with pain and fatigue. Hot baths, hot or cold compresses, pain creams, and even diet choices can ease flare symptoms.
Please also keep in mind that if something seems out-of-the ordinary or far worse than any flare-up you’ve previously experienced, it’s important to seek medical care. While we can typically predict or identify flares, it’s also possible to get it wrong. If something seems unusual, it’s important to seek medical attention to ensure you’re not experiencing something more serious.