Edie B. – Diagnosed at age 55
If a health professional like myself struggled to get an accurate diagnosis, how much are others suffering? I was diagnosed in 2021 after the typical years of bizarre and seemingly unrelated symptoms. Profound fatigue, horrible rashes on my trunk and torso, mouth ulcers, hair loss, weight loss, fevers and debilitating joint pain in my hands, feet, knees and neck. I am by nature a high energy, kinetic, active person. I loved to run long distances, play tennis, downhill ski, hike and bike. I had envisioned a life after raising a family as one spent enjoying athletics such as golf, pickle ball and tennis. These symptoms stopped me in my tracks. Some days I barely had enough energy to get through the day and the chronic pain prevented me from doing anything more than walking.
I had seen several doctors about the fatigue and joint pain but all came back with arthritis, post menopausal symptoms and one told me I had central sensitization syndrome. A routine trip to the dermatologist of all people changed everything. I showed him pictures of the rashes and mouth ulcers and he immediately ordered more extensive lab work. Most of it was unremarkable, however there were a few concerning results that prompted yet again another rheumatology referral. In the meantime my primary care reached out regarding the lab work and over a zoom appointment said three words that changed my life for the better. " this is Lupus". My husband had tears running down his face to finally have some answers as to why his high energy, joyful wife had become a shell of herself.
Now, 18 months later, I can honestly say I have my life back! Not the same life, but a new and wonderful life full of old and new activities. I have learned that I have to adjust how I move through my days. I can mostly do it all, just not all at the same time. I have a wonderful rheumatologist. I am on several medications that (with some perseverance and commitment to getting through the side effects) are working well. I am swimming, golfing, hiking and biking and re-engaging with my life again.
My wish is that my story could help one person get an accurate diagnosis, help one person have hope, help one person feel supported. We have much work to do as patients with lupus and as advocates!