Spondyloarthritis: A Story of Math, Disconnection and Pain

Hello everyone. This is me finally breaking my silence. I don’t know if I am a source of inspiration or depression. I am very lonely – not that I am alone – but I feel very disconnected.

I had that telltale, terrible pain suddenly two years ago. I took over-the-counter NSAIDs, which went well for the first few days. But boy, did time fly by as I realized one day that I had been taking NSAIDs for five straight months, every day, just to curb the pain.

Stretching became nearly impossible. I decided to try going to a doctor.

One MRI and you can see the huge battle that is happening in my sacroiliac joints. It is especially hindering the left hip joint, which is minimally eroded, with a lot of nerve damage radiating to my knee.

I was actually relieved when I learned the name of this battle playing out in my body.

“Axial spondyloarthritis,” she told me.

“What’s that?” I replied.

That’s when she said I should try to alter my whole lifestyle before taking biologics. I have to be extra careful with my food because I have inflammation in my gut, too. Honestly, that was not a surprise to me.

I have lived with chronic shoulder bursitis since I was 16. (I’m now 27. I live in Egypt and work as an automotive engineer.) I have ulnar nerve entrapment too in my left elbow. After my first set of tests, the doctor confirmed I am HLA-B27 positive.

I’ve seen two rheumatologists now, and I have also been diagnosed with psoriatic arthritis (PsA) along with axial spondyloarthritis (axSpA). I have it all. A history of psoriasis, inflamed Achilles tendons, and the inflammation in my shoulder has gotten much worse. I am forced to sleep in a tilted position now. Both sacroiliac joints hurt and my feet are always burning. At this point, I’ve been in literal agony for two years.

Each flare is unique now, just like spices. One spice is bitter… and one is sweet.

Sneezing is the most destructive weapon.

My sleeping has never been better – the irony.

When I am sitting, I can’t stand up all at once. I have to stand up in waves. The math of SpA and PsA: It takes two minutes to fully stand up. Five minutes to get out of bed.

Shoelaces seem to play jokes on me.

I have bad brain fog. I forget to drink my coffee sitting on the table until it gets cold.

I am depressed. There is so much I want to do but can’t.

The worst part is my family thinks it’s nothing. They say, “You are still young. Try to be more active.” They have no idea about the fight I am living.

I feel very disconnected. I can’t stop gaming because that’s one thing that keeps me disconnected from the pain of the world.

I feel more and more detached, yet I have high hopes. I keep praying. Without prayers I can see myself falling further into depression. I hope you are all better than me and I wish you all pain relief, fellow SpA warriors.