Many of us have had a frustrating experience being diagnosed with Raynaud’s. We may be aware that our painful white toes or numb blue fingers aren’t normal, but when we speak with a doctor, we don’t hear a clear or helpful message of what’s causing these symptoms or receive the right advice on how to manage them. Why is Raynaud’s missed or misdiagnosed? Here are a few factors:
- No Formal Test for Raynaud’s – Today there is no formal test to diagnose the primary form of Raynaud’s, only tests to determine if a patient with Raynaud’s has the secondary form (i.e., a byproduct of a serious autoimmune disorder). Doctors have to either witness an attack, view photos showing a sufferer’s digits having changed color during an attack, and/or listen carefully to a patient describe their symptoms. Infrared thermography is starting to show some promise as a diagnostic tool, but it’s not mainstream yet in its application to Raynaud’s.
- Raynaud’s tends to be a personal experience – We all have different temperature thresholds, everyone doesn’t go through the textbook white/blue/red color changes, and we may describe the symptoms and pain differently. So it can be somewhat challenging for a doctor to identify a case of Raynaud’s based on a patient’s input.
- Several other disorders share similar cold triggers – When a doctor hears that you experience pain as a result of exposure to cold temperatures, the explanation might be a number of other medical disorders, including: Cold Urticaria (an allergy to cold resulting in itching and rash symptoms), chilblains (skin on hands/feet develop small, itchy patches and swelling as a reaction to cold temperatures), and acrocyanosis (hands and feet turn blue due to blood vessel constriction and can be caused by cold exposure). To further complicate the issue, these disorders aren’t mutually exclusive to Raynaud’s, so a patient may experience more than one at a time.
So why is Raynaud’s missed or misdiagnosed? Given the above factors, it’s no wonder doctors have a difficult time accurately diagnosing the disorder on a case-by-case basis.
We’re not excusing the medical community for its sometimes inaccurate reading of Raynaud’s, we just want fellow Frosties to understand the challenges involved in getting to the cause of their pain and discomfort. Even those fortunate enough to be properly diagnosed can experience a cavalier attitude from medical professionals, writing off the disorder as “no big deal, just move to a warm climate and wear gloves.”
Getting advice on the available treatment options is another challenge. See our article titled Treatment Options for Raynaud’s Phenomenon for more information about medications and surgical procedures clinically proven to help alleviate Raynaud’s symptoms.