One of the questions we ask our members is how they discovered they had Raynaud’s. According to the statistics, only one in ten Raynaud’s sufferers seeks medical treatment when symptoms occur.
A common response is, “I thought it was normal, that everyone responded the same way I did when they were cold [or stressed].” And when they do talk to their doctors, their pain is minimized or dismissed: “Move to a warmer climate,” they might say. Or just “keep warm.”
The Raynaud’s Association consistently urges Frosties to seek medical attention to rule out more serious, underlying diseases that may be present—and treated. These include systemic scleroderma, lupus, multiple sclerosis, Ehlers-Danlos Syndrome and more. Fortunately, only 10 percent of Raynaud’s cases fall into this category (known as “secondary” Raynaud’s). Nevertheless, people with both primary and secondary Raynaud’s often find they must limit their social activities, adapt to cold workplaces, and find products and methods to avoid or minimize painful episodes.
In the coming months, we’ll use our social media platforms to ask Frosties about their personal experiences for how they discovered they had Raynaud’s and then share their responses with you. This isn’t a scientific survey by any means, but we hope the answers will resonate with others.
Because we posted our first questions in Raynaud’s groups on Facebook, all responses came from people who already know they have the disorder. We asked: How did you learn you had something called Raynaud’s? Who told you your disorder was Raynaud’s (or did you discover it on your own)?
Some of the respondents discovered they had Raynaud’s on their own via the Internet. Cecilia Soto learned she had Raynaud’s after doing her own research online. “It started with cold fingers and toes, numbness and then the color change and blisters,” she wrote. “First I thought it was the socks, then the shoes, and had no answers. After investigating a bit, I talked to my doctor, showed him some pics, and he diagnosed me. Still doing some testing trying to find if I have an autoimmune disease also.”
Cecilia’s idea of showing her doctor pictures of her color changes is an excellent way to demonstrate a Raynaud’s episode, as symptoms may not be visible during the office visit.
Natasha Bhavnani’s primary care physician also recognized her Raynaud’s after he learned about her symptoms and examined her. “I was diagnosed in my mid 20’s after having sporadic episodes of white, painful fingers,” she said. Although he didn’t do any testing such as an antinuclear antibody (ANA) test, usually done to detect inflammatory diseases, Natasha said “It was probably a quick diagnosis for him because I also have Arthrochalasia Ehlers-Danlos syndrome.” aEDS is an inherited connective tissue disorder that is caused by defects in a collagen protein.
“At the time I didn’t connect the two, and he didn’t mention a connection,’ she added, ‘but after a decade, I have realized I have Secondary Raynaud’s.”
Kayla Sutton was recently diagnosed with Raynaud’s. “Three months after having Covid is when I first noticed my fingertips would turn white.” After a year of battling with the issues, she noted, she went to her doctor. “He did say that Raynaud’s is associated with autoimmune diseases, but I would like to get blood panels done to rule them out.” Excellent idea, Kayla, to be proactive. If your doctor doesn’t do bloodwork, ask him or her to do so!
For Denise S., it was a podiatrist who first diagnosed her Raynaud’s when she was being treated for an unrelated foot issue. “I’d often noticed that my hands and feet would be cold but I wasn’t actually looking at them,” she reported. After the podiatrist mentioned Raynaud’s, Denise started looking at and taking pictures of her hands and feet to document the changes when she became cold. Later, armed with the photos and a recounting of her symptoms, a rheumatogist diagnosed her with Sjogren’s Syndrome. Sjogren’s is a systemic autoimmune, rheumatic disease that affects the entire body but is most commonly characterized by dry mouth, dry eyes, fatigue and musculoskeletal pain.
Like many other sufferers the Raynaud’s Association has spoken to, Laura Dawson has suffered with excessively cold hands and feet since she was a child. The only gloves that helped were made of sheepskin. “Regular thick gloves didn’t work,” she said. The pain started after just a few minutes outside in the cold and continued to worsen as she got older. “It was the pain clinic doctor who suggested to my general practitioner that I might have Raynaud’s,” she reported.
John Silverman – one of the ten percent of males who has Raynaud’s – also suffered from unusually cold hands and feet in his early years. “I just attributed it to outdoor ice hockey I played as a middle schooler,” he said. Then, playing outdoor sports in college in Vermont, he heard teachers and other students talking about Raynaud’s. “My symptoms fit the description. Also, I knew my mom had Raynaud’s, and I’d already been suspicious, so I assumed I had it.”
Jennifer Bertoldo did extensive research on her own to determine the cause of her painful extremities. “I went online and Googled my symptoms and kept coming up with links to Raynaud’s. I then followed tips I learned from those websites about how to manage my symptoms.” She reported. “After a few years and developing some new or worsening symptoms I asked my general physician about it. When he saw my dark purple toes he agreed to refer me to a specialist.”
The Raynaud’s Association is very interested in hearing and sharing more stories on how fellow Frosties discovered they had Raynaud’s. Just fill out our Tell Us About Yourself Form and we’ll contact you for permission to share your Raynaud’s discovery stories with the Frostie community.
Editor’s Note: Please note that, to date, there has been no clinically established link between Covid and the onset of Raynaud’s symptoms, as Kayla’s account may suggest.
