Hi Everyone, my name is Ali. I am 55 years old. I want to inform you all ahead of time that this is quite long. (apologies in advance) 🦋
I'm not even sure where to begin because so much has changed over the past year.
I've lived with fibromyalgia and osteoarthritis for many years, but over the past six months my health has declined dramatically. My exhaustion is overwhelming, nearly every joint in my body is painful, and I've developed several new symptoms, including dropping things frequently, urinary incontinence, significant hair loss with scalp lesions, and worsening inflammation. My quality of life has changed tremendously.
Over the past several years, my rheumatologist has performed extensive testing. My alkaline phosphatase and C-reactive protein (CRP) levels have remained elevated, and I have a positive ANA with homogeneous and speckled patterns. Because my biological half-sister has lupus, my rheumatologist initially suspected lupus but referred me to a dermatologist to rule out psoriatic arthritis after my scalp symptoms developed.
The dermatologist spent very little time evaluating me, briefly looked at photos of my scalp, and concluded it could be psoriasis. Based on that, he stated I likely had psoriatic arthritis and recommended that I start a biologic medication through my rheumatologist.
At my most recent rheumatology appointment, I learned there had been confusion regarding the dermatologist's report. Once it was clarified, my rheumatologist discussed starting a biologic but provided very little explanation about my diagnosis or why that treatment was the best option. I left the appointment feeling overwhelmed and with more questions than answers.
At this point, I still don't know with confidence whether I have lupus or psoriatic arthritis, as many of the symptoms overlap. Because biologic medications treat different autoimmune diseases in different ways, I don't feel comfortable starting one until I have a clear diagnosis and fully understand my condition and treatment options.
For that reason, I have decided to seek a second opinion and have an appointment with a new rheumatologist at the end of August. My hope is to receive a thorough evaluation, a definitive diagnosis, and a treatment plan that I can feel confident moving forward with.
To make matters worse, after everything that happened at my last rheumatology appointment, I seem to have gone into the worst flare I've ever experienced—or at least that's what I believe is happening. The fatigue is unlike anything I've ever known. Even after eight hours of sleep, I can barely keep my eyes open if I sit down for more than a minute. My eyes ache constantly and feel extremely strained. The joint pain throughout my body has intensified, and the mental fog is far beyond the "fibro fog" I've dealt with for years. It's hard to explain, but this feels completely different and so much more severe.
I am absolutely miserable. I find myself crying throughout the day because I don't understand what is happening to my body, and it's incredibly frustrating to feel like I've lost all control over it.
Thank you for letting me share my story. It truly helps to know there are others who understand what this journey is like. While I wouldn't wish these struggles on anyone, it is comforting to know that I'm not alone. ♥