Your Stories: A Bit of Positivity

On one of the many online forums for people living with spondyloarthritis, a user posed a question: “Can people over the age of 60 offer some wisdom? How have you managed to live a fulfilling and adventurous life? Just looking for a bit of positivity.” Here is one of the replies; the author asked to remain anonymous but is happy to share her experiences in the hopes that it will motivate others, especially the newly diagnosed who wonder what the future might hold for them.

I am female and HLA B27 negative. My spondyloarthritis didn’t start until I was in my late 30s. I am in my 60s now. For years in my late 30s and 40s, I just thought I needed a new mattress because my lower back was painful and stiff every morning. I would also walk like I was a thousand years old every morning because everything was stiff, and it would feel better once I moved around enough.

I had always done long endurance exercise (long-distance backpacking, marathon running) and had started running super long distances (longer than marathons) and doing Ironman triathlons, so I thought this stiffness was just the usual post-exercise tightness. This went on for years. I have a super high pain tolerance, so I just ignored it.

Then, in my late 40s, I had a super flare-up that hit me out of nowhere. I was sitting on the floor playing Legos with my son, and WHAM, all of a sudden, I realized that I was in incredible pain and inflamed all over my body, and something was massively wrong with me. I made an appointment with a rheumatologist.

Bloodwork was normal, but on the MRI, my sacroiliac was “lit up like a Christmas tree.” I started on Humira and methotrexate, which actually didn’t help much. I was on them for a miserable few years and then went off Humira because I was having numbness and tingling in my arms and legs, and the doctor couldn’t rule out Humira as the cause.

Meanwhile, the numbness was actually caused by a neck injury I got while building a shed, but by the time we figured that out, I was eating gluten-free and dairy-free, and this actually put the spondy into total remission. (Your mileage may vary; this helps some people but not others).

I was in remission for years and years, then I had Covid this winter (fully vaxed, mild case, but it triggered autoimmune stuff) and after that, the spondy started ramping up again. It is tolerable as long as I stay on my diet, and I can still pound the crap out of myself with exercise and activity in my 60s. I’m still hiking, traveling, doing carpentry, etc., but I want to make sure there is no ongoing damage. Do I need to be on a biologic to keep it from getting worse? I have an appointment with a rheumatologist later this summer.

I do think that exercising all my life (even as a kid I would walk miles every day just for enjoyment) helped me to deal with the spondy. Apart from biologics, any exercise we can do is the best treatment for this. Especially swimming. I became a swimmer so I could do triathlons, and it has remained my most deeply fulfilling and healing activity, providing the most pain relief outside of meds.

So my biggest recommendation is to stay as active as possible for your entire life, and if land-based activity is too painful, get into water. If you can’t swim, just move your body and enjoy the break from gravity pulling on your joints.