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Thread: Chilblain / Pernio Advice

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  1. #1
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    Default Chilblain / Pernio Advice

    Hi all,

    I haven't been posting a lot lately -- busy life, not feeling great -- but I do still check in daily! However, right now, I'm having a problem that I thought I could tap the collective WHL wisdom for advice about.

    I have chilblains on my toes. They're basically red spots that are both itchy and painful, and living in the wintry north doesn't help them any. I know some of y'all have dealt with these, too, as they're more common in those of us with autoimmune disease and Raynaud's. No "normal" people seem to know what I'm talking about-- including my aunt, who is a doctor ("Never actually seen those in real life!").

    So, tips for managing these? Standing and walking ranges from uncomfortable to painful. Sleeping is difficult because the itchiness keeps me up. They seem to be getting worse each day, not better.

    I am so annoyed. I don't even know what I'm going to do next week when I actually need to wear my suit and pumps for work. My feet are not going to be happy...

    Thank you all!

  2. #2
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    I have some bad ones right now - I know EXACTLY what you mean!!!! :-P

    Get a scrip for some Nitroglycerine Cream from your doc - one tube will last you the rest of your life, LOL...you only use a tiny bit and the tubes are huge. Rub it on there before you go to bed at night, and first thing in the morning - it's amazing. It opens up the capillaries or something wonderful, and just takes away so much of the itch/pain. It won't make them totally go away, or solve the Raynaud's, but it helps a lot - at least for me.

    Just be sure to read the pamphlet that comes with it - you have ot be careful not to get too much of it on you or use it too often - if you get half a tube smeared around, or if you use it while on certain heart medications, it can cause heart rhythm problems - but if you're just using a little bit on the tips of your toes it's not a concern at all. I am just always careful to wash my hands after applying it.

    AND if you travel by air, be sure to carry your prescription information with you, because nitroglycerine is one of the things dogs are trained to sniff for. In certain forms, as you probably know, it is an explosive. (I always make jokes about being careful not to stub my toes when I have it on there, or the toes might detonate....).

    Hope that helps...they really can be quite painful. Best of luck!

  3. The Following 3 Users Say Thank You to SleepyInSeattle For This Useful Post:

    Chloe (03-14-2014), Derrie (01-18-2013), tgal (01-23-2013)

  4. #3
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    Someone else with pernio! I haven't felt so normal in a while!

    Pernio is actually how I was diagnosed with Lupus. The sore was actually cut off of my toe for a biopsy. So I'm not really positive what the procedure is to care for it. SleepyInSeattle seems to have given a great response though (thanks!)

    The only thing that I can add is that I started taking Amlodipine for Raynaud's last year after I was diagnosed with pernio. Amlodipine has seriously changed my life. My Raynaud's was debilitating and with the meds I don't have any discoloration and more importantly I don't have any pain. It's unbelievable.

    Be careful toughing out the pumps (the things we do haa) and I wish you only the best!
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

  5. The Following 2 Users Say Thank You to theLword For This Useful Post:

    Derrie (01-24-2013), tgal (01-23-2013)

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