Helpful hints for living with the symptoms of mast cell disorders shared by patients living with these disorders – Heat & Cold

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Heat & Cold as Triggers:

I have to avoid heat and humidity at all costs. I will suffer not only on the hot day, but for days afterwards.


I have developed an inability to eat hot soup due to my heat sensitivity. I have to eat the soup warm, and sip ice water in between eat spoonful to prevent projectile vomiting.


I have to keep the A/C on all summer, and make sure that the car is cool before I get in it on hot days. For those that have heat intolerance, the remote starter in cars is great in the summer- no more to entering a hot car!


I wear a cooling neckband all summer when out in the heat and humidity.


In my case I sometimes get warm regardless of outside temperature. I avoid hot showers and warm temperatures whenever possible. In summer months I carry a small water bottle to squirt water on face/neck/arms to help cool down (if the humidity isn’t too bad, it acts as artificial perspiration to cool body, even if water isn’t cold or you don’t have a fan). It is amazing how much this works.
• I also use an old fashioned hand fan that folds small to carry in my purse.
• I dress in layers during cold months so that I can remove clothing before getting overheated.
• Very important – I wear natural fabrics (cotton) that ‘breathe’ (leather shoes) so they do not trap air in and overheat. This especially true for nightwear.
• If you live in very cold climate, remove hat or gloves when starting to overheat as that can help cool down quickly (for myself, once I start overheating it’s difficult to cool down, so I do everything to stop it at first sign).
• Use cold washcloths at the first sign of overheating.
• Putting a cold can of soda on neck or pulse points can help cool down to avoid developing hives from overheating.
• I can’t wear my hair on my neck in summer if I’m outside. It has to be shorter so it doesn’t reach neck or longer so I can pull it off my neck. (This is important for parents of children with skin lesions as the child might not realize or be able to articulate what a difference this can make.) *Cooling vests, neckbands, or towels available are available for sale on-line.


*Someone recently mentioned putting a sheet in the freezer and then taking it out with you when getting into a car that’s been sitting in the sun.

*Someone also once mentioned wetting a sheet and hanging in front of a fan in an apartment that didn’t have air conditioning.

*No hot showers. Lukewarm or cool or sponge baths only. I schedule my showers so that I do not have to dress immediately afterwards; I need to cool down before dressing.

*I can’t use hair dryer immediately after I shower; I have to cool down.

*If I do stay in hot water too long and start to hive and itch, if I can avoid scratching for 20 minutes, I find that the worst part goes away.


I recommend that the 1st layer of clothes to be light weight silk or cotton with poly over. Sometimes direct cotton creates too much friction for me, but can’t go straight poly, as it doesn’t hold body heat so I will get cold. Silk holds body heat then poly on top is light weight.


Silk long underwear also helps avoid aggravating my skin lesions. Anyone looking to buy it – the time when ski shops have it on sale is at end of winter season. There are online sites that just sell winter silk long underwear, too. You can google it.

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