Welcome to our Summer 2025 RA Q&A column where we share our responses to inquiries about Raynaud’s symptoms, products, treatments, doctors and more.
I just stumbled onto your website yesterday and I was amazed at the information it provides. Especially the stories of other people that are also suffering the side effects of Raynaud’s; so many of their stories are as though I wrote them myself. One of the major problems I am finding, in addition to the agonizing pain and symptoms I deal with every day, is that all the doctors I have went to so far, are totally dismissive of Raynaud’s and generally tell me to wear warmer clothes or move to a warmer climate. I feel like I am hitting a brick wall to get anyone to understand the pain and upset to everyday life caused by having Raynaud’s. I have even shown them pictures of my often purple, red, or white toes and fingers, plus pictures of my toes split open, ulcerated and bleeding, which causes horrible pain when that happens.
My plea today is to ask that since you are an Association for RAYNAUDS, and have the extensive knowledge, understanding and most of all compassion for this syndrome/disease/phenomenon, can you please recommend or direct me to a rheumatologist that will help me? I will travel anywhere for an appointment and to be treated as a person suffering from this, someone who needs help and a supportive doctor. A doctor that knows this is a real medical problem with often severe and very painful side effects. Thank you for taking the time to read this.
Thanks for your inquiry, I totally understand how frustrating it is when doctors give Frosties the “cold shoulder.” Unfortunately, it happens all too often…
You didn’t state where you live, but if you’re willing to travel, your best option is to see a rheumatologist at one of the Scleroderma Treatment Centers across the U.S. Here’s a link listing their locations: https://scleroderma.org/treatment-centers/.
Doctors at these centers are very experienced dealing with the most severe Raynaud’s symptoms, as the large majority of scleroderma sufferers have Raynaud’s and their cases can be quite extreme. So these centers know to take Raynaud’s seriously, and are up-to-date on research and treatment options.
If your symptoms include digital ulcers that are open and bleeding, you truly need immediate care! I hope doctors at one of these centers can help you and bring you some peace of mind and relief.
I came across your website while looking for answers for my daughter. She came home sick from school with a pounding headache, chills, fatigue and a sore throat last Monday. She mentioned her fingers turned completely white in school, but I didn’t think much of it. She was sick for 4 days and also complained of knee discomfort. She was negative for strep, flu, and Covid, so I told the doctor about a tick that I had pulled off of her and felt she needed a Lyme Test due to the knee pain. They did not feel that was necessary.
A few days later at a softball game she came up to me and said her fingers were white again. I looked at them and immediately knew it was Raynaud’s when they went from white to blue. I have mixed connective tissue disorder, lupus and Sjogren’s antibodies, as well as hypothyroidism/Hashimoto’s. It’s been hard to get a response from the doctor this week because they are so busy, but our naturopath is running a Lyme, ANA, and thyroid test on my daughter. You seem to be the experts and I’m wondering if this is something a lot of young girls experience and what else I could be doing to figure out what’s going on. Thank you for anything that you can offer!
Thanks for reaching out to us. I’m not a medical professional, but will do my best to address your concerns.
From the photos, it does appear that the white discoloration could be Raynaud’s. It would help to know that the trigger for their appearance was either cold temperatures or stress. Your daughter may have been stressed at school the day she was sick, and a few days later the outdoor temperature at her softball game may have been below her comfort threshold. But it would be good to take note of when this discoloration happens and what’s associated with it’s appearance.
You also don’t state that your daughter experienced any kind of pain associated with these symptoms. Is that the case? Does she ever complain of the cold? Have you ever seen her take steps to warm her fingers (or toes, or other extremity) after exposure to the cold?
Generally when children experience Raynaud’s symptoms at an early age, it tends to be the more mild primary form. But given the fact that you have several autoimmune disorders and they do tend to run in families, it’s good that you’re running the ANA test to determine if there may be an autoimmune primary ailment involved. Even if the presence of an autoimmune disorder is ruled out, you’ll be establishing benchmarks to trend for future readings, as it can take a few years for one to surface. For these reasons, I would suggest you consider consulting with a pediatric rheumatologist, as these are the specialists most knowledgeable about Raynaud’s and related autoimmune conditions in children.
I know it’s difficult to accept the possibility of the condition at such a young age, but be grateful at least that you know and understand the cause of your daughter’s discomfort. So many of us grew up suffering as children, but weren’t formally diagnosed until we had a series of major attacks at middle age. I went for years wondering why some activities were harder for me to tolerate than they were for others, and could increasingly not dress as stylish as my friends who were wearing strappy heels and light sleeveless outfits – even in warm weather.
Raynaud’s tends to be a conditioned response. That means the more you allow an attack to happen, the easier it is to trigger the next event and more intense it’s likely to be. The good news is that the opposite is also true. The more you protect yourself and keep attacks from occurring, the less severe and frequent your attacks may be in the future. Knowing this at an early age can help you achieve a better, more comfortable quality of life going forward. The earlier your daughter starts practicing good habits and protections, the better. Here are some general suggestions to consider:
- Keeping Warm – Dress warmly, and in layers, as that adds flexibility to avoid overheating, but also helps warm the core which is key, as Raynaud’s attacks happen in response to the body sending more blood away from the extremities towards the body’s core when under threat of cold or stress. Wear a hat when outdoors and warm gloves or mittens (consider adding liners), socks and boots. Boots with soft, fuzzy lining also helps, as skin can become sensitive during and after attacks. It’s good to wear boots a bit larger than her normal size to allow for swelling and thicker socks like Heat Holders for protection. Neck gaiters and scarves can also add overall warmth to the body. And you might find useful ideas in these posts from our blog:
Best Gloves (or Mittens) for Raynaud’s Sufferers, Best Warm Toe Solutions for Raynaud’s Sufferers - Warming Products to Keep Handy – She may want to keep a stash of disposable hand and toe warmers with her (like HotHands Warmers). These are found in many sporting goods and ski shops, plus larger retail stores in season. The warmers heat up when they’re exposed to air. There are also small rechargeable warmers to keep with her in the classroom or have in her pockets outdoors like Ocoopa Rechargeable Hand Warmers. The G-Tech Heated Pouch is also a great option for outdoor use. Heated vests and hoodies just look like a standard layer to fellow students, but she’ll be toasty for hours wearing one (good brands include Volt, Gobi, Venustas, G-Tech and Gerbing).
- Fingerless and Typing Gloves – These are great for indoor warmth when dexterity is needed to write, type, etc. With fingerless gloves, even though the fingers aren’t covered, warmth on the wrist can help open the arteries leading to the fingers. There are several options in the Marketplace section of our site, including Wristies, Refiber Designs and Limbkeepers. Also in this category, we recently tested a new version of The Writer’s Glove® (come in pairs, but the name is singular). These gloves are a thin, stretchy combination of polyester and spandex, with a hint of copper (known to help regulate blood flow and boost circulation). They were designed for use indoors offering enough dexterity for typing. They are a really great option for us Frosties who need a lot of dexterity for using touchscreen and other electronic devices.
- Warm Skin Cream – Warm Skin doesn’t exactly do like it sounds, in that it doesn’t immediately warm the skin – it provides a protective barrier from the cold. It’s used by Arctic explorers, Postal workers and NFL players, all pretty good credentials. You put it on while you’re still warm before going outside. It won’t necessarily keep you from getting cold, but it will make it less severe.
- Avoid Touching Cold Items Directly – That’s often difficult when eating in a public place like a school cafeteria, here are some tips: Use insulated drinking glasses or mugs. Cold items in a Thermos brought from home will add protection. Plastic is easier to handle than glass, as it adds more insulation. Placing a napkin or insulating material around a cold glass, soda can or container to protect fingers from becoming cold also helps.
- Exercise, Motion and Quick Tips – Activity helps boost circulation, so hopefully if she starts out with lots of layers in P.E. classes, she’ll eventually get warm enough to lose a few and still be warm outdoors, then add them back as she’s in-between sessions or taking a break. When fingers get cold and it’s difficult to warm them, it helps to place hands under warm (not hot) water when indoors. Outdoors swinging arms around in a windmill motion can often get the circulation back quickly.
You might also want to consult our guide: The Cold Facts on Raynaud’s at www.raynaudsguide.org. Hope the above suggestions and product information are helpful.
We’d appreciate your feedback on our Summer 2025 RA Q&A column. Have questions for us? We’re not medical professionals or the Good Housekeeping Lab when it comes to testing products, but we’ll do our best to provide fellow Frosties with answers. Write to us at info@raynauds.org.
