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Temperature reactive mastocytosis

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FugitivePrinces
FugitivePrinces

Anyone have this and got any advice on controlling it. xx

0 likes, 3 replies

3 Replies

  • Vaxxine
    Vaxxine FugitivePrinces

    Posted

    Hi Princess,

    My Dx is MCAD (probably MCAS or ISM) and I am always more reactive in cold weather. I've hated cold weather my entire life and will do anything to avoid it. I suspect it's because I've been reactive all along; my body was trying to tell me something. I get very red-faced and sometimes itch after a hot bath or shower /during exercise (histamine release), but I don't have any other type of more-severe reactions. Many, many others do however, and I read their accounts in various Facebook groups (great place for support and questions.)

    Reactions are controlled with diet and lifestyle adjustments, plus medications that block the chemicals mast cells release (histamine blockers, mast cell stabilizers, leukotriene blockers).

    • rose00110
      rose00110 Vaxxine

      Posted

      How do you get to facebook groups that would be encouraging 
    • Vaxxine
      Vaxxine rose00110

      Posted

      Go to the Facebook website and sign up for a free account. Search in the address bar for the group or subject you want. Click the group and go to the page. There's a little "Join Group" button under the large photo at the top of the page. Click the button and join the group.

      Some groups are closed (comments are private) so Admins approve all new members. This can take a few minutes or a few days, depending on how active the Admins are.

      The Facebook groups have been very helpful to me and I hope they help you find more answers, too. Take care.

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