My Husband's AS Flare Symptoms
I've been part of the AnkylosingSpondylitis.net community now for a few months. Something that's stuck out to me from reading comments is how different flare-ups feel for each person. I Googled what a flare-up is, and while there's no objective way to measure what flares are (that is, a peak in inflammatory markers or bone growth), it is known to be a change in disease activity. This means that symptoms peak and often bring along pain and immobility. To investigate further, I interviewed Keegan, my husband with AS, to understand how his flare-ups feel, what causes them, and what helps the most.
What are the top causes of a flare-up for you?
Keegan: The top is mental and emotional stress. If I'm stressed out and I'm not focused on keeping up with my positive physical and mental health routines, I might be emotionally susceptible to being upset or depressed in a day, which triggers a flare-up. The day I was stressed about our cat a few months ago, that triggered a flare-up for me. The second reason is the weather. My AS is super affected by temperature changes and changes in humidity. That makes seasons like spring and fall where there are a lot of rapid changes very tough. It's just too much for my body.
Can you describe how a flare-up feels in your body?
Keegan: I usually feel it coming on. I feel super agitated and feverish. I have hot and cold flashes. I get really bad brain fog early on when it starts. All over pain in my joints, which is usually pretty sharp. Then I often have my neck, shoulders, lower back, and hips, I have debilitating inflammation that causes me to use more energy to move my joints.
Is the pain more all over or can you pinpoint it?
Keegan: It's all over. There are a couple of kinds of pain I usually experience in a flare-up. There's pain in my joints, which can be dull and constant or sharp. There's pain in my muscles that are more like shooting. They run up and down the length of my muscles. I can have really deep tight muscle pain surrounding my back where I have inflammation. My muscles cramp and can get super tight.
I don't really get swelling of the hands and feet. Sometimes I get uveitis, but often it's not a big deal. It's never like my eyes get really red.
What helps you prevent a flare-up?
Keegan: Making sure I get enough rest when I feel fatigued and making sure I keep up with yoga and good eating habits. Obviously also keep up with my medicine.
What helps you get out of a flare-up?
Keegan: I don't know. I have to take it really easy just until my body works it out. If I push myself, I can prolong my flare-up. It's kind of like a cold where I have to rest and let it pass. Shortly after [the flare up], I resume my yoga. I don't usually have the energy or pain tolerance to do yoga during a flare-up. I know when I'm getting out of a flare-up because yoga starts to feel good again.
For those who read this interview, I hope that it brings you helpful information. Do you experience flare-ups the same way? Or how are yours different? We'd love to hear from you!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?