The Raynaud’s journey for Pat Oneill has been a long and frustrating road. While not confirmed, it may have begun with a severe case of frostbite back in her 20’s. Decades passed, and it wasn’t until she reached the age of 74 when more serious symptoms began that eventually lead to her diagnosis of Raynaud’s secondary to CREST syndrome.
She remembers noticing her fingers occasionally turning white. Still, it did not raise serious alarms until she developed three painful ulcers on her fingers. The journey of hopping from one doctor to another started there. Her longstanding physician’s assistant, the dermatologist she was then referred to, along with three other doctors she previously consulted offered no answers, just antibiotics which didn’t help them heal. Her fingers were getting increasingly painful, and no one seemed to know why. She was desperate for relief and clarity.
On a particularly painful Sunday, she went to a walk-in clinic seeking help and some answers. The practitioner there took an X-ray confirming the infection hadn’t entered her bloodstream and declared “To me it looks like Raynaud’s!” The doctor admitted his expertise did not cover this territory, prompting Pat to do her own deep dive into what Raynaud’s was all about.
Armed with Google and a growing sense of urgency, her research led her straight to the type of specialist she needed: a rheumatologist. With a new direction and a little push, she managed to secure an appointment. This was the turning point.
The rheumatologist was thorough and identified that Pat’s Raynaud’s was secondary to CREST syndrome, a limited form of progressive systemic sclerosis. The initials stand for calcinosis, Raynaud’s phenomenon, esophageal dysfunction and telangiectasia.
Regarding treatment for Pat’s digital ulcers, when the doctor heard she planned to spend the next two months in Florida, he said “Wonderful! I couldn’t prescribe anything better for you right now, come and see me when you get back.” And he was right. Her condition improved remarkably during her stay in Florida, accelerating her recovery.
In treating Pat’s CREST syndrome, her rheumatologist initiated a comprehensive approach, extending his diligence to her overall cardiovascular health by recommending a visit to a cardiologist.
Pat was already seeing a cardiologist after self-diagnosing her heart was racing, sending her to the ER. An EKG showed nothing alarming, but the ER doctor – who also noted the color change in her fingers being associated with Raynaud’s – consulted with a cardiologist who hooked her up with a heart monitor and ordered a cardiac MRI. All appeared fine, but he decided to change her blood pressure medication from Amlodipine (a drug clinically proven to alleviate Raynaud’s symptoms) to Metoprolol to help lower her fast heartbeat.
Metoprolol is a beta blocker, a category of drugs known to potentially aggravate Raynaud’s symptoms. Pat’s first day on the new drug resulted in severe pain in her fingers, causing her to read the pamphlet accompanying the drug which clearly stated it was not for use by patients with Raynaud’s. Obviously, her Raynaud’s condition was not clearly shared between the two doctors before she was prescribed the new medication.
While many doctors throughout Pat’s health journey were a source of frustration, she has nothing but accolades for her rheumatologist who came to her rescue after a follow-up visit with her hand surgeon who expressed concern that she could lose one of her fingers from lack of circulation. In response to the surgeon’s diagnosis, her rheumatologist intended to consult with him directly but, by fate, called Pat by mistake. In asking the right questions, he declared her finger was, in fact, getting proper circulation, further solidifying her trust in his care.
Pat’s experiences made her realize how integral it is to have a proactive relationship with your body and clear communication with your health providers. She’s learned to always ask questions, drive her health narrative, and know that sometimes, you’ll find your best help where you least expect it.
Pat’s advice to anyone facing similar health mysteries: Seek knowledgeable specialists like a rheumatologist, keep your core warm, and never underestimate the importance of being your own health advocate. You deserve a doctor as dedicated as mine, who views your health as a precious narrative, worthy of careful reading and understanding.
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