Raynaud's Patient Guide

U.S News Report recently published a Raynaud’s Patient Guide. We’re so happy to see a mainstream publication recognize that Raynaud’s warrants attention!

The Guide was created through interviews with leading medical experts, including Dr. Fredrick Wigley of Johns Hopkins, who was a charter member of our Medical Advisory Board. Topics include:

  • Types – Primary vs. Secondary
  • Causes
  • Symptoms
  • Diagnosis
  • Treatments
  • Healthcare Providers
  • Related Articles

A few notes on the contents:

  • Correlation between age and type of Raynaud’s – We’ve seen this published here and by other sources stating that those who develop Raynaud’s earlier in life tend to have the primary form. The problem with linking age to type is that it can take many years to be properly diagnosed. A patient goes through life cold all of the time thinking they have poor circulation. Then in middle age it gets to the point where they finally mention it to a doctor because of the pain – maybe it’s getting worse over time, or maybe they’ve recently experienced a situation that triggers it to get worse. So they are diagnosed in middle age – an indicator of Raynaud’s being the secondary form, but they’ve really had Raynaud’s since childhood. Until there’s more widespread awareness of Raynaud’s and more formal tests to diagnose it properly, let’s discount this “fact” as a “maybe.”
  • Is Raynaud’s hereditary? This statement is open to interpretation. In many families, more than one member does have the condition. However, a true genetic factor has not been clinically proven. And it isn’t clear whether or not family connections are based on increased awareness of the condition among relatives or a true inherited genetic link. Given the low awareness of Raynaud’s in the population, once a family member associates their condition with Raynaud’s, it’s likely the whole family is more apt to recognize the symptoms among others in the clan.
  • Description of symptoms – The Raynaud’s Patient Guide has some wonderful analogies to describe Raynaud’s symptoms, for example: “The pain from Raynaud’s is similar to having an excruciatingly tight rubber band around your finger for a long time, thus cutting off blood flow,” and “It’s hard for people to feel comfortable walking when they don’t have access to the toes…The ends of their feet feel like cold blocks, which doesn’t really contribute to stability.” Feel familiar?
  • The diagnostic process – There is no formal test to diagnose the primary form of Raynaud’s. So in the days before everyone walked around with a camera in their pockets, doctors had to listen to symptoms or witness an attack. Today, patients can share photos of their fingers and toes turning white or blue, and it’s an easier process for the doctor. But the Guide makes an important point: Raynaud’s attacks are intermittent, not continual. Patients don’t have white or blue fingers all the time; they aren’t experiencing painful symptoms around the clock. Attacks can last minutes or hours, but they do come and go. When a patient says they have issues all the time, it can alert the doctor to look for another medical explanation.
  • Drugs can cause or aggravate Raynaud’s – This is an issue that is often overlooked. ADHD drugs and chemo treatments can cause Raynaud’s. Some drugs used to treat high blood pressure in the category of beta blockers, along with over-the-counter antihistamines, can aggravate Raynaud’s symptoms as they work to constrict the blood vessels.
  • Moving to a warm climate isn’t always the best strategy – While symptoms may be less acute in warmer areas of the country, there can still be major issues for those living with Raynaud’s in these areas. First, moving by itself is a major source of stress, which can trigger attacks. Second, stores, restaurants and other public places can be air conditioned all year round, including times when a Raynaud’s patient is at their threshold for tolerating the temperature outdoors, resulting in the indoor temps being intolerable. Then moving back outdoors – even though it’s warmer – can still trigger an attack because any dramatic change in temperatures (up or down) can cause a spasm. We’ve heard from many relocated Frosties who are miserable once they move to warmer climes. So think about how much control you’ll have over your day-to-day environment, along with lifestyle changes and local support resources after the move before making any life-changing decisions.
  • The right specialists – While the Guide talks about “seeing the right specialist,” it never states what specialty is most knowledgeable about Raynaud’s. Then at the end of the Guide where they list Health Care Providers, these are just links to nearby hospitals. For the two hospitals in my area, the doctors listed cover pediatrics, infectious diseases, plastic surgery, and other non-related specialties. There’s no mention of rheumatologists, even though two out of the three doctors interviewed for the article are, in fact, rheumatologists. This is the specialty most knowledgeable about Raynaud’s because they treat the more serious autoimmune diseases associated with the secondary form.

U.S. News’ Raynaud’s Patient Guide does an excellent job of covering the subject, even if the medical resources at the end aren’t as relevant as we’d like to see them. But the content overall is thorough and accurate. Our comments are only to help make the point that so much about Raynaud’s isn’t black and white, and there’s still much left unknown, particularly the cause of the primary form which involves 90% of Raynaud’s sufferers.

Here’s a link to the full Guide: A Patient’s Guide to Raynaud’s Syndrome

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