An upcoming rheumatology appointment has me feeling uneasy

The last trip I made to a hospital in Perth, Australia, to see a rheumatologist for my ankylosing spondylitis (AS) was before the world was disrupted by COVID-19. It’s been several years since I’ve sat in a sterile waiting room, watching the clock hands tick slowly around, as I wait for an appointment in a room full of quietly sighing patients.

Since the world went into lockdown in 2020, I’ve had only phone appointments, which I haven’t found particularly helpful. They were brief, hurried affairs that often caught me off guard, and I’d realize afterward that I had a crowd of questions on a dusty notepad that I’d forgotten to ask.

This time, I’d like to be more prepared for my rheumatology appointment.

I’m scheduled for a face-to-face discussion this month. Because it’s been so long, I hope to have my mobility measured and an in-depth conversation about the progression of my AS, as well as obtain information about any new medications that are becoming available.

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Mixed feelings

I’m feeling strangely nervous to see a rheumatologist, probably because I’m scared to hear that my disease is progressing. Luckily, I feel like I’ve made plenty of headway with my own drastic lifestyle modifications, which have had a huge impact on my daily (and nightly) pain levels. But despite this respite from the daily joint pain, I’ve found that my occasional flares have become worse.

At the time of my diagnosis, I was experiencing a fairly even and horrible level of daily pain that would get much worse every single night. Day after day, my AS symptoms were mostly the same. But five years after my diagnosis, thanks to my lifestyle adjustments, I can be nearly pain-free for weeks or even months at a time, with only a few niggles to remind me that AS can never be cured.

The flare-ups, however, have me feeling that I’m on an unpredictable seesaw that can throw me into the dirt at any moment. If I eat even a morsel of starch, I can feel the grinding and burning beginning in my sacroiliac joints and shoulders within a matter of hours. If I get stressed, my hormones fluctuate, or I get a cold or other sickness, my body responds by painfully increasing my AS symptoms.

At times, I’m experiencing some new symptoms, too, including rib and sternum pain that can take my breath away. At the other end of my body, my heels and Achilles tendons are sometimes painful and tender, especially when I get out of bed in the morning. I’ve read that heel pain is a possible complication of AS, though my rheumatologist has never mentioned it before.

Though I feel I’ve had much longer stretches of good days since starting the no-starch diet for ankylosing spondylitis, I have to balance myself carefully. I can feel the disease hovering over me, ready to pounce the second I stop keeping my eye on it.

I suppose I’m nervous because I’m not sure how a rheumatologist will react to this explanation of swinging symptoms, or how they can be controlled. I’m not quite sure what assistance to ask for, or what direction might be possible.

What I’m hoping to achieve

To stay organized and hopefully get some answers, I’m writing a short list in my notepad to take along to the hospital.

Following are a few of the topics I’d like to discuss:

• Direction on handling new symptoms
• The best things I can do to get relief during a flare
• Details of any new AS drugs, and what my next step is in terms of medication
• Guidance on exercise and whether an exercise physiologist might be fully or partially funded by the public health system, to ensure I’m getting beneficial movement for AS.

Putting thought into my questions has brought me a measure of hope, because I can seek the most benefit from my appointment. I don’t like the feeling of bobbing around uncontrollably on an ocean of uncertainty. I always feel more comfortable when I take control to seek solutions and advocate for my own health.

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.