ArthritiChrissy

February 19, 2021. I go for a walk at the beach. Later that day, I take a 30 minute Peloton ride. My knees feel a little rough, but hey, that’s normal. I’ve spent 20 years visiting orthopedic doctors for my problem knees (and hips, and shoulders, and elbows on both sides of my body), but no one can ever find any issues on my x-rays or MRIs, so I’m used to pushing through discomfort.

This time, though, things are NOT normal. My left knee swells up to a noticeable degree. Despite so many doctors telling me they couldn’t find anything diagnostically wrong with my joints, I’ve insisted that something. Is. Wrong. And this flare up confirms to me I need to seek out YET ANOTHER DOCTOR.

The Diagnosis

I’m spiraling with anger. I refuse to start over with another doctor who will tell me nothing is wrong. That’s demonstrably false. My sister-in-law asks if I’ve ever seen a rheumatologist. Well, no, because I don’t even know what that word is.

Powered by nothing but rage, I call the closest rheumatologist from a quick Google Maps search. The receptionist, who I will come to adore, asks me if I’m sure I need a rheumatologist. I am beside myself and use every remaining ounce of energy in my swollen, miserable body to say yes, please just give me the next available appointment.

Fast forward to two telehealth visits and one blood test later. I’m sitting in my doctor’s office sobbing uncontrollably when he says “I know what’s wrong and how to treat it. We’re going to take care of you”.

My story, unfortunately, is not unique. Other than no one ever catching that my joint complaints were simultaneously on both sides of my body (!!!), I don’t fault the many doctors I saw before finding my rheumatologist. Orthopedists have their diagnostics, and those never showed signs of autoimmune disease. Fine. I’m just relieved I finally found the right doctor to match up to my symptoms and disease.

The Treatment

Once we established I was dealing with inflammatory arthritis from an autoimmune condition, it became clear I’m a textbook case of seronegative rheumatoid arthritis. I immediately started the usual course of Methotrexate, eventually failing that and moving up the step therapy ladder to a Simponi Aria infusion + Methotrexate.

While my current combo of drugs is working fairly well, I have always been curious if and how diet and exercise could influence my disease activity and inflammation even more. I started (and still am) quite overweight, and now that I’m over 40 there is an added concern about lifestyle diseases as well as the effect of excess weight on my already inflamed joints.

Despite these interests and concerns, the thing that really pushed me to get serious about how I could better manage my overall health was once I caught my first upper respiratory infection as an immunocompromised (due to my RA treatment) person. I started getting more serious about adopting a Mediterranean diet and moving every single day. I learned that daily movement improves the way my joints feel more than anything else.

The Future

I’m still experimenting with diet, but I’ve discovered a mostly-plant-based, mostly-gluten-free diet makes me feel the best. Whether or not this has any effect on my disease activity is TBD (my bloodwork does not show any improvement, but I feel better in general, and my food is so much more beautiful!).

As I realized how much better I feel as a person eating plant-based, I started reading and watching more about Mediterranean and Blue Zone diets. On top of modifying my disease activity I’m interested in weight management and healthspan. This started the infinitely-deep rabbit hole I currently find myself in, learning about the human microbiome, how it affects the immune system, and how gut dysbiosis is related to autoimmune disease.

I invite you to join me as I explore the world of chronic illness and how things like diet, exercise, sleep, stress, accessibility aids, and more can affect our lives with these diseases! Do you or someone you know have a similar journey to diagnosis? Have you found lifestyle factors that work well on top of your medications?