A painful ankylosing spondylitis puzzle: Sore shoulders and elbows?
Seeking treatment for joint pain that is making common tasks hurt
Lifting his toothbrush toward his mouth, my husband, Dave, grimaced in pain. “Elbow still bothering you?” I asked, although I already knew that his elbow and shoulders had been causing him increasing discomfort for months.
You’d think a tiny, almost weightless thing like a toothbrush shouldn’t be painful to lift. Or a glass of water, a fork, or any of the other countless minor arm motions we make all day without really thinking about them.
Although Dave was diagnosed with ankylosing spondylitis (AS) several years ago, he’s been experiencing a new kind of pain and inflammation in his shoulder and elbow over the past several months. It’s a bit of a puzzle as it’s in a different location from his regular AS inflammation.
Normally, Dave’s not a person to complain lightly. He’s an athletic, energetic guy in his early 40s who enjoys lifting weights and barreling across hills on his bike in the dark. (Nighttime, cross-country bike riding is cooler in the searing hot summers of Perth, Australia.) When he occasionally comes home from a bike mishap, he shrugs off the bloody laceration with a smile, even though I’d probably be wailing loudly if I’d injured myself like that.
So when I can see Dave’s lips pressed together in pain, or notice that he’s cradling one elbow and reluctant to pick up items, I know his joints are painful enough to be concerning.
Conventional tactics aren’t enough
In the search for answers, Dave saw a physiotherapist multiple times to explore if the joint issues might be tennis elbow or perhaps a torn tendon. But he was told that his joint pain didn’t meet any of the normal criteria for run-of-the-mill joint issues or tendonitis.
In an attempt to improve his joint pain, the physiotherapist advised him to stop any exercise that used his affected joints for a period of time, but Dave saw zero improvement when he did that. Compression bandages, range-of-motion exercises, and physical therapy had little to no effect.
Inspecting his shoulders and elbows under a bright light, I can see that his affected joints are strangely swollen and have a visible, odd puffiness under the skin, even to my medically untrained eye.
Is joint pain related to AS?
The fact that several joints have been simultaneously affected makes us both think his issue is related to AS. It’s not just one shoulder or elbow that might’ve been injured or overused. It seems more like an AS flare, where multiple joints in the body can become inflamed at the same time.
As Dave explained in frustration, after yet another fruitless physio session, “I’ve been through all of this before when I was first diagnosed with AS. Yet again I have pain and inflammation that doesn’t respond to any normal therapy and that no doctor or physio can explain or help me with. I have enough experience with my ankylosing spondylitis now to be pretty sure these new symptoms are related.”
When it comes to AS, the most discussed symptoms are pain and stiffness in the back, in particular the lower back or sacroiliac joints. However, peripheral joint pain or enthesitis (which is inflammation where tendons and ligaments attach to bones) is also in the spondyloarthritis family.
The Spondylitis Association of America also explains, “In a minority of individuals, pain does not start in the lower back, or even the neck, but in a peripheral joint such as the hip, ankle, elbow, knee, heel, or shoulder.”
I was surprised to discover just how common it is for people with AS to have issues in peripheral joints. The CreakyJoints website quotes Theodore R. Fields, MD, a professor of clinical medicine at Weill Cornell Medical College and an attending rheumatologist at the Hospital for Special Surgery in New York City, as saying, “About half of people with psoriatic arthritis and ankylosing spondylitis have enthesitis.”
Joan Appleyard, MD, a rheumatologist at Baylor College of Medicine in Houston, adds that “Symptoms are pain sometimes accompanied by swelling.”
Frustrated but still proactive
Dave made the decision to stop seeing a physiotherapist for his painful and swollen elbow and shoulders and to raise the issue at his next rheumatologist appointment. The only remedy that has helped him is to take strong nonsteroidal anti-inflammatory drugs, which he’s resorted to after nothing else had an effect.
It’s disheartening to feel that you’re getting some level of control over your disease, just to have it change direction and add areas of pain to the mix. I’m proud of my husband for approaching this unpleasant development logically and calmly and following the steps recommended by trained medical and physio professionals, but also trusting his own instinct to know when to seek assistance from another specialist.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.