New here…new to diagnosis and have questions

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  • #14454
    ShellyGShellyG
    Participant

    Hi everyone. I’m Shelly and live in MD. I was recently diagnosed with primary Raynaud’s in April 2020. My fingers and toes are affected right now but I’m struggling with my toes more. They are turning a deep purple every time I sit and of course I work on a computer all day. I can feel the restriction when the circulation in my toes are being cut off but I can’t get up and move as much as I need to. I’m afraid it will cause the ulcers (as I’ve read when researching). But a Vascular surgeon said medication is not worth the side effects for me right now. Does any one experience the same or have any advice they can share??
    I also seem to be so much colder than I ever was in my life. I used to be hot all the time. I do realize that it’s most likely due to the Raynaud’s and my fingers and toes feeling so cold. My fingers seem to be feeling really stiff lately too. Not sure if this is just age (I’m turning 50 this month…ugh!) or working on the computer for so long or this new disease. Maybe all of the above. Is anyone experiencing the same??
    Any help would be greatly appreciated. Thank you!

    #14477
    Lynn WundermanFrostie
    Keymaster

    So sorry to hear you’re having major issues with your toes this season. It can be extremely painful wearing shoes or even having anything touch the tips of the toes once they reach a certain threshold in cold weather conditions.

    Regarding medication, it appears your doctor prefers not to prescribe oral meds for you (perhaps your blood pressure is already borderline or too low?). It’s true some Frosties experience side effects (headaches, dizziness, etc.), but it’s also important to match up with a drug that works best with your body, and there are several options available in the category of calcium channel blockers which are clinically proven to help with Raynaud’s symptoms. I personally got headaches from one drug, and switched to another and have been on it without issues for over 20 years.

    Beyond the oral drugs there are topical meds that your doctor can prescribe. The active ingredients in these creams and gels are nitroglycerin and/or nifedipine (also the key ingredient in one of the most commonly prescribed oral drugs). It’s more challenging using topical meds on toes than on fingers (have to disrobe the feet, wait for it to dry, etc.), but still they can help boost circulation and provide some relief.

    As for products that may prove helpful, check out our blog post titled “Best Warm Toe Solutions for Raynaud’s Sufferers” at https://www.raynauds.org/2016/01/19/whats-the-best-warm-toe-solution-for-raynauds-sufferers/ and you may find some ideas worth trying.

    Hope the above information is helpful in providing some warmth and comfort!

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