My over active imagination
I've been told by my ex-rheumatologist and my local doctor that the pain and fatigue I have is in my head. Despite the fact that pain killers work to reduce the pain and I had fantastic results with Leflunomide and Methotrexate. Unfortunately, Leflunomide gave me heart problems and on Methotrexate I lost the ability to communicate and had no short-term memory so I had to stop. ATM I'm using paracetamol, an opioid pain patch, vitamins, exercise, and rest.
The long journey to a PsA diagnosis
I have had PsA for 16 years and only get scalp psoriasis occasionally when I flare. My journey to diagnosis took 10 years. I had comments from doctors like, "you're tired because you chose to have 3 kids," "you don't have PsA because you don't have psoriasis," and "your finger and toenails are just a fungus" (that can't be detected). Early days were painful visits to physios and podiatrists, 6 months wearing moon boots, 2 years wearing night splints and religious dedication to painful stretching every day, cortisol injections, radial shock-wave therapy, and thousands of dollars thrown at finding relief.
Currently, I'm not seeing a rheumatologist. The last one was a specialist in PsA and despite that, she wrote a scientific paper that showed 50% of people with PsA pain don't have high blood inflammation markers. Even so, she was convinced I was imagining the pain and told me she didn't want to see me again. She even tested me for enthesitis and found spots all over me around various joints and in points along my spine. She must have written to my local doctor because now my doc thinks I'm making it all up.
Confused on what steps to take now
Sometimes I wonder if I am going nuts and don't know where to turn. I'm so lost and don't know what steps to take next. My doctor wants me off opioids but the relief it gives me helps me to ride my bicycle a couple of times a week and do daily joint strengthening exercises, and less night pain equals a night of better sleep.
Am I really going crazy? Is there no such thing as PsA pain and fatigue? I don't get what is going on. I'm sure the pain is real as several rheumatologists have confirmed my enthesitis and the physiotherapist I see can feel areas that are swollen and tender.
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