I’m Caroline and I’ve suffered from Raynauds for more than 20 years. I have something called Cold Agglutinin Disease, a by-product of chronic lymphocytic leukemia. My understanding is that there’s a rogue protein in my blood that makes my platelets clump together at cool temperatures. The blood becomes literally too thick to get into the tiny capillaries in my fingers, hands, feet, face, even my eyeballs. A couple of times this winter the reaction has even involved my lower legs and forearms.
I have many coping strategies for cold hands and feet, including disposable chemical “Hot Hands” hand and toe warmers (with fleece fingerless gloves to hold them in place), rechargeable heated insoles for the feet (by Thermacell–can’t say I recommend these), and rechargeable electronic hand warmers which I use in a down-filled, pile-lined muff (for hunters, from Cabela’s, a godsend!!). I set the thermostat at 73 degrees during the day and do everything in my power to keep from getting too far into a reaction from the cold, because the pain and paralysis are so bad one just doesn’t want to repeat it ever–though sometimes it’s unavoidable.
On my hematologist’s orders I don’t go outside in very cold temperatures, so my life is restricted in some major ways. Fortunately I have supportive family and friends and the ability to cope with most manifestations of this condition. I’m thankful to have connected with this community and wish all of you comfort, healing and warmth!
Thanks for posting about your experience with Raynaud’s. It sounds like you have found many ways to cope and prevent attacks. Welcome!
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