New here, but not new to Raynaud's

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  • #5687
    Lhartiganlhartigan
    Participant

    The earliest I remember realizing that I had Raynaud’s was in college (I am now 47).  A friend, who was pre-med, looked at me holding my drink at a party and he said, “I think you have Raynauds”.  And I said, “Huh?”.  And he took my hand and put it in the freezer, to perform a not so scientific test.  Well, he was right.  I have it.  The worst part of my Raynauds are the sores that I get after an episode.  I believe them to be chilblains.  I would be curious to know if others get them?

    Here are some random thoughts about me and my Rayauds…My kids call me “Ice Mommy” and I often use my cold hands to cool their warm heads.

    I am that guest who refuses to shed my shoes at your front door.  Sorry, won’t do it.  I cannot walk around any house in just my socks and keep my feet warm.

    I will not get on an airplane with open toed shoes EVER.  Not if it’s summer, not if I am flying to the tropics, won’t do it, can’t do it.

    I cannot wear gloves.  My fingers actually get colder in gloves, than if I just leave them bare and stick them on my neck or under my butt.  Driving and my steering wheel are my biggest enemies.

    I have actually run for 2.5 miles on my treadmill before a Raynauds episode ended.  Yes, I ran for 2.5 miles with numb feet.  Exercise is not a quick fix.

    I ALWAYS travel with slippers.  I cannot walk on the floor with bare feet.

    I seem to be what I call a temperature Diva.  Cold affects me, but if I get too hot, that’s bad too.  If I exercise in the heat, I get dizzy and feel like I might faint.

    When I am comfortable, my hands are cool.  If my hands are warm, it is usually a sign that I am overheated.  In those cases, my hands are on fire and are REALLY warm and red!

     

    #5702
    JudithJudith
    Participant

    Hello, lhartigan. You mentioned that you’re curious to know if others get chilblains. I do,  and I agree with the comment you made in one of your other posts that chilblains can be worse than Raynaud’s. In that post you said that the sores you get do not ulcerate; mine actually do, and that can be excruciating, so I suggest you do everything you can to prevent them from doing so. One tip I will share is to coat each one with petroleum jelly and then cover it with a bandage to protect it; this is especially helpful with chilblains on toes as it protects them from getting rubbed by adjacent toes.

    Are you taking any medication for your Raynaud’s? It’s believed that the meds commonly used to treat Raynaud’s are also helpful in preventing chilblains.

    #5748
    Jdprimatejdprimate
    Participant

    I’m a former navy transplantation technician, from the late 70’s, early 80’s. In addition to many other duties, I was trained and conducted HLA on person’s at NAMRU 3, Cairo, Egypt. We were looking for an association of Schistosomiasis intected person with HLA. Just saying.

    I also tested ,for fun, my mother, father, a couple of my siblings and myself. My Dad was a B27, as was my sister Rebecca, and myself. Rebecca and I have complained of Raynauds for years. We’ve just lived with it. As a matter of fact, I had a bad case last evening after returning from an all day in D.C., often outdoors in the cold elements. My dad never mentioned it. My daughter has complained of having it. Our symptoms seem to be similar: palor-cyanosis-paresthesia.

    So, just had some down time and decided to do a little research and see how everyone else is doing. Take care, John

     

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