When Amy Hebel-Brenner sought medical attention for the persistent discoloration on her toes four years ago, her primary care doctor knew right away that it was Raynaud’s.
The specialist, a Doctor of Osteopathic Medicine (D.O.), didn’t do bloodwork to look for antibodies that might help to determine whether the Raynaud’s was primary or secondary to an underlying disorder, but she told Amy there was “nothing systemic” going on. That was the good news Amy was told. “But she also said there was nothing I could do about it and that there was no medicine that would help,” she recalled. “She told me to go online and read about it.”
Fortunately, the 67-year-old Nevada resident found answers from the Raynaud’s Association’s website. “I learned a lot; the difference between primary and secondary Raynaud’s, the various treatments, and what steps others are taking to help prevent and minimize painful episodes,” she said. “Mostly, the Raynaud’s Association information relieved my fear that something terrible was wrong with me!”
She added, “The only person I knew who had heard of Raynaud’s was a nurse who also has it, so I was really glad to find all the information.”
Despite her doctor’s assurance that there was no underlying disease causing the painful discoloration, Amy wonders whether that’s accurate. “My eosinophils (specialized white blood cells that curb infection and boost inflammation) have always been high on blood tests,” she notes. “About 25 years ago, because of the high eosinophils, a doctor sent me to a rheumatologist to see if I had rheumatoid arthritis. I didn’t. Through the years I have come to assume that my eosinophils are high because I have celiac disease, which is an autoimmune disorder.” In that case, Amy has secondary Raynaud’s indeed.
Although Raynaud’s pain seems to be targeted at her toes, Amy recently has noticed the side of her hand “feels like I have tiny paper cuts. I don’t know whether that’s due to Raynaud’s or not.” Nevertheless, she always wears gloves in the winter and takes several preventive measures to help prevent her toes from throbbing and turning purple. “When it’s really cold outside, I wear two layers of socks, really warm shoes and even two pairs of pants. I always triple layer my shirts and wear a hat—even in the summer.”
These steps helped a great deal when she was a teacher. “Playground duty in cold weather was always a challenge for me,” she said. “If I had a fan blowing on me in the school, it would cause my entire body to drastically drop in temperature and push me into a drowsy, chilled state. At that point, I simply felt like crawling into bed with a heating pad.”
Now a retired teacher working as a writer, Amy uses a space heater when she’s sitting at the computer. “I also love a hot, steamy bath every night before bed. When the tips of my toes become sensitive, I massage my feet twice a day and make sure to keep the skin soft and pliable. This seems to help relieve some of the pain,” she reports. Yoga, too, she claims, has been a “lifesaver.”
Her succinct advice to other Frosties? “Prevention! Keep warm, lubricated and exercise regularly.”
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