November 7th, 2021
Recently diagnosed with Ankylosing Spondylitis (AS) and still have more questions than answers?
When I was diagnosed with AS I had so many questions constantly racing through my brain that I couldn’t turn it off. I would lay awake at night Googling each and every question that popped into my head (something I do not recommend), doomscrolling and falling deeper and deeper into that rabbit hole.
I would ask questions like what will my future look like? or how quickly will this disease progress? or how safe are the treatments? I never found definitive information in response to any of these questions, but as I’ve done more research I’ve become more comfortable talking about my AS and less anxious about what the future may hold.
Just as I cannot predict what my future will look like with this disease, I cannot predict what your future will look like. I am also not a healthcare professional so, as a disclaimer, I want to remind readers that what I say here comes from my own research and experience living with AS.
Ankylosing Spondylitis What? Misunderstanding, False Cures, and Isolation
I had never heard of Ankylosing Spondylitis until the day I stepped into a Rheumatology office. When I told my family and friends my diagnosis, the questioning looks mirrored my reaction when hearing that hard-to-pronounce name from the physician. Ankylosing Spondylitis what?
While most people I know have heard of Rheumatoid Arthritis and Lupus, Ankylosing Spondylitis was completely foreign. But research shows that Axial Spondyloarthritis (which includes Ankylosing Spondylitis and non-radiographic axial spondyloarthritis) may affect up to 1% of adults in the U.S., making it’s prevalence similar to that of Rheumatoid Arthritis.
All of this is to say that an AS diagnosis might mean that you’re responsible for explaining your disease to those around you. After all, with limited awareness of the disease comes limited understanding. Early on I found myself struggling to explain my disease to my loved ones at a time when I didn’t have a sufficient understanding of the thing myself.
An AS diagnosis might also mean the need for support, both for the stress of the diagnosis and the affects of the disease. Ankylosing Spondylitis is no joke. It’s systemic, meaning it has the potential to affect any and every system of organs throughout the body. It’s also a rather painful and occasionally debilitating illness, which makes it all the more important to have a solid support system.
Many fellow AS warriors that I’ve spoken with do have a supportive, empathetic partner or family member in their lives, but some do not. For those who do not have support from loved ones, you still don’t have to go it alone. There are lots of blogs, online communities, Facebook groups, and even in-person support groups out there. I highly recommend joining a community specifically for people with AS to help curb any corresponding anxiety and isolation.
On top of that, there’s some decisions to be made regarding who you reveal your illness to and the unintended consequences of those decisions. I’ve had more than a few people, whether in-person or online, tell me that my AS can be cured by a certain diet, pill, or exercise routine. So an AS diagnosis might also mean dealing with the nay-sayers and non-believers, which also means coping with the repercussions of being dismissed, disregarded, and misunderstood.
Where Doesn’t It Hurt? - Common and Uncommon Symptoms
The truth of the matter is, this disease affects everyone differently. There are a wide array of possible symptoms, some more common than others. One symptom that’s a hallmark of the illness: lower back and sacroiliac joint pain, inflammation, and damage. But what other symptoms are possible with AS?
An AS diagnosis may mean:
Spinal fusion at some point in the disease progression, though this is more common in men than women
Chronic fatigue, which feels like your bones are made of lead, weighing you down and requiring extra energy to just walk from room to room
Constant, undeniable back pain that gets better with movement and worse with inactivity
Heel pain caused by enthesitis, or inflammation of the entheses (places where tendons and ligaments attach to the bone)
Widespread enthesitis causing more widespread joint pain and restricted mobility, especially in joints with more tendons and ligaments such as the hips
Eye inflammation that causes photosensitivity, pain, and redness - iritis or uveitis
Peripheral arthritis, or pain and stiffness in the joints in your arms and legs, which tends to be more common in women
Costochondritis, or inflammation and pain where the ribs attach to the spine, cartilage, and breastbone. This often feels like pain and pressure of the chest wall, which may be alarming at first but once identified is more of an annoyance (in my experience)
Widespread body tenderness, where little pressure causes increased pain
Gastrointestinal involvement, often characterized by stomach pain and frequent diarrhea
Unpredictable flare-ups that lead to increased pain, fatigue, and flu-like symptoms
Insomnia, often called ‘painsomnia’ since it’s joint pain that causes or contributes to lack of sleep
I have developed many of these symptoms, but not all at once. My disease progression began with back pain, and back pain exclusively for many years. Then, I developed peripheral arthritis and uveitis, followed by costochondritis and gastrointestinal pain.
One thing I find difficult to cope with is the unpredictability of symptoms and disease flares. I’m lucky enough not to have frequent flares, but my disease is by no means in remission. There is a potential for remission with this disease, especially with the right treatment plan, but there’s also the possibility for frequent flare-ups and nearly constant chronic pain.
This list is overwhelming for sure. For one, it highlights the diverse range of symptoms an AS patient may have, while also underscoring the inability to predict one’s future with this disease. But remember, most individuals do not develop ALL of these symptoms.
I’m almost tempted to advise the newly diagnosed to ignore lists of symptoms like this. However I think there’s value in knowing about all of the potential disease manifestations so that, if you develop one of these symptoms, you can identify what’s going on and tell your rheumatologist.
The Long Run - Medication Cocktails and Treatment Outlooks
You may well know that there’s no cure for Ankylosing Spondylitis or any of the Spondyloarthropathies. So at this point, there’s no getting ride of AS once it manifests. However, there are a lot of great treatment options available.
Most treatment options focus on slowing disease progression in hopes of avoiding bamboo spine (spinal fusion). But these treatment options also help control symptoms and decrease severity.
Rheumatologists often recommend a combination of Biologics (injections or infusions of Humira, Simponi, or other similar medications), DMARDs, NSAIDs, and the occasional dose of prednisone when inflammation becomes severe.
But some AS warriors decide to forego these medication cocktails for as long as possible, for various reasons. Some have success managing the disease with NSAIDs, exercise, and an altered diet (avoiding foods that are known to increase inflammation, such as sugars). One thing I’ve cut out of my diet is alcoholic beverages, since they’re known to increase inflammation and, by association, joint pain. Physical therapy may help increase mobility and flexibility as well.
So an AS diagnosis will likely mean making important decisions about your treatment plan, and maybe even having to make these decisions over and over again. In my experience, finding the right combination of medications, exercise, and diet can make a world of a difference for day-to-day pain and fatigue symptoms.
What an AS Diagnosis Does Not Mean
I want to end this article on a positive note. Though this disease is painful and can be debilitating, many are able to lead a “normal”, albeit altered, life.
While this diagnosis may mean changes in your body and a change from your pre-disease abilities (how far you can run, how long you can stand on your feet or sit in one place, how often you can do certain activities), it doesn’t always mean a complete change in lifestyle. I am still able to hike (though in a more limited capacity), work full-time plus some, go to concerts and sporting events, and take long road trips. To make this all happen, I’m always equipt with pain medicine, pain creams, and may have to make more frequent stops on road trips, but there are very few activities that I’ve had to cut out of my life.
Of course, this disease affects everyone differently and my experience may not be the norm. Some may fare better than I do, others may be a bit more limited. But this disease often does not mean a huge change in lifestyle. With the right tools and treatment, AS is manageable.
And I’m a firm believer that a positive outlook goes a long way. The initial diagnosis makes a positive outlook difficult--I know that well. But if you can avoid doomscrolling, if you don’t assume the worst but instead focus on what’s right in front of you (i.e. how your body feels and what you’re actually able to do), you may find some peace and acceptance. I hope you do.
-Jessica