"Blessed by B27"
Hello, my name is Simon, and I am 45 years old. Since 2019, I have been suffering from spinal arthritis with the B27 antigen.
Diagnosed with chronic pain
It all started with swelling in my ankles and knees, along with frequent disc herniation. These symptoms were accompanied by constant pain. Various rheumatologists tried biological treatments such as Simponi, Humira, Taltz, Cosentyx, and Rinvoq. Unfortunately, none of them worked, and two of them caused side effects, including intolerance and even loss of consciousness.
My last rheumatologist concluded that it was chronic pain, since X-rays did not show significant inflammatory sites. Over the years, I have been prescribed many painkillers, including Tramal, Oxycontin, Oxynorm, Ketamine, Fentanyl, Paracetamol, and Morphine. Today, I take the latter, which allows me to walk and get through the day.
I am in constant pain 24 hours a day, but from time to time, I experience crises lasting from several days to a few weeks, during which the pain becomes unbearable.
Searching for another solution
Unfortunately, my physiotherapy is not going well either. I often cannot attend my sessions, and the pool—where I feel the best—is 30 steps away, which I struggle to climb. I have stopped working and am on full disability benefits. I lost my business, and my family lost the comfortable life we once had. Thankfully, we are sticking together.
Unfortunately, in the country where I live, it is difficult to find a doctor who is willing to step outside the system. Every doctor suggests increasing my morphine dose, nerve infiltrations, or trying more biological drugs. I am looking for information from people in a similar situation to mine. It is truly difficult to find the motivation to get out of bed each day. I see a psychologist, but our sessions feel more like a monologue than actual therapy.
Please share your experiences and any treatments that have helped you. I feel like an 80-year-old man waiting for his last day, and the thought that I cannot be fully present as a father for my teenage children—who see me suffer every day—is devastating.
I ask for help and wish everyone a good day.
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