Confused – new diagnosis

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  • #14794
    ShellyGShellyG
    Participant

    Hi Everyone.

    I was diagnosed with Primary Raynaud’s in March 2020. I finally got in to see a Rheumatologist a couple weeks ago. The doctor told me that I have Chilblains on my toes. He said he didn’t think it was Raynaud’s but then later said I could have both.

    Does anyone else have this? I’m so confused. I’m not sure if I have both or what. My fingers definitely turn white when I touch something cold or when I’m outside in the cold. My toes get so frozen and feel like they’re going to break off. I definitely have some type of circulation issue in my fingers and toes. I’m freezing all the time now whereas before I was always hot.

    I’m just so confused. Another thing to research and watch out for. Anyone else have the same issue? Thank you!!!

    #14806
    Lynn WundermanFrostie
    Keymaster

    Sorry you’re having issues. Given there’s no formal test to diagnose Raynaud’s, it can be a very frustrating process confirming the disorder. If your fingers are turning white when exposed to cold temperatures, it’s likely to be Raynaud’s. Best to confirm with a rheumatologist. These are the specialists who are most knowledgeable about Raynaud’s, as they treat the more serious autoimmune disorders associated with the condition.

    One of our earlier moderators posted the following suggestions earlier for dealing with chilblains that you might find helpful:

    While Raynaud’s and chilblains (also known as perniosis) may occur individually, it’s not uncommon to have both of these conditions. In addition to dressing warmly, ways to prevent or deal with chilblains include:

    o After exposure to cold, warming the affected area (toes in your case) very slowly, as rapid warming can lead to the development of chilblains.

    o Never exposing the affected area to a direct heat source (such as a space heater), as this too can cause chilblains to develop.

    o Increasing circulation by exercising. So, in your case, you might want to get up periodically from that desk to get the blood moving in your feet.

    o Not wearing shoes that are too tight, as pressure may exacerbate chilblains.

    o Using lotion to keep the skin soft and supple.

    o Ensuring that chilblains that have become ulcerated do not become infected. It is advisable to consult a physician when chilblains become ulcerated.

    Calcium channel blockers (CCBs), including Nifedipine and Amlodipine, the medications most often prescribed for Raynaud’s, are known to reduce the occurrence of chilblains as well. Severe chilblains may be treated with topical steroids.

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