Mast Cell Disorders Forum

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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Cold to the core! http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1391890808 Message started by Ladybug on 02/08/14 at 08:20:08

Title: Cold to the core!
Post by Ladybug on 02/08/14 at 08:20:08

There are times when I am simply too cold to sleep. Does anyone else here experience that? How do you warm up? Have you taken your temperature? Mine hovers around 96+ when that happens.

Would anyone know if mast cell disease can cause this and how? I feel sorry for hubby as I he ends up getting overheated.

Thank you!

Title: Re: Cold to the core!
Post by KatFromMD on 02/09/14 at 03:56:38

At times I can get so cold, particularly my feet, that I'm in pain and can't fall asleep. My husband makes me a hot water bottle, and I got a large heating pad to wrap around my feet, but it still can take awhile to warm up to the point that I can fall asleep.

The last week I've had the opposite problem...night sweats!

Title: Re: Cold to the core!
Post by Ladybug on 02/09/14 at 05:23:42

Hi Kat,

I used to live in the Baltimore area. Sorry that you have to be here. I didn't even think of using a heating pad. I have one stuffed away somewhere. I'll definitely dig it out and use that for extra heat.

Do you have any idea if our mast cells cause this? Thanks!

Title: Re: Cold to the core!
Post by Bruce Hart on 02/09/14 at 15:50:45

EDIT: Actually yes feeling cold is symptom finding in MCAS.

From MCAS specialist Dr Afrin:

"The most common temperature-related complaint by far is a near-constant sense of feeling cold(without necessarily suffering any frank chills). ...subjective and/or objective hyperthermia and/or hypothermia, sense of feeling cold much of the time"

Reference:
https://www.novapublishers.com/catalog/product_info.php?products_id=42603 (in free pdf download)

My Original Post Below:

I wonder if it could be indirectly caused by mast cell disease by affecting your diet. I've gotten pretty cold when it wasn't even really cold many times and can't handle the cold well on most of the few foods I can tolerate, but when I can get raw milk I actually get hot when I would be cold with the other foods. And raw milk is the only thing that allows me to maintain a healthy weight too so I think I just get more energy from the raw milk.

Oh, and I tolerate raw milk better than anything else too. Unfortunately, the easy to get regular pasteurized milk is one of the worst things I can consume. I can drink a gallon of raw milk per day, even a half gallon as one meal with no problem, but even a cup of regular milk will mess me up bad and make me feel like I haven't slept in 3 days and make me fatigued, bloated and constipated and headaches sometimes.

Title: Re: Cold to the core!
Post by Joan on 02/09/14 at 16:57:30

A hot bath before bed can help or a hot foot soak if you can't tolerate a hot bath. 15 minutes should be enough.

If that doesn't help (or even if it does), wearing soft, warm socks to bed can help, too, as long as they're not too tight. Not too alluring, but practical! Flannel sheets are good, too.

Title: Re: Cold to the core!
Post by Bruce Hart on 02/09/14 at 18:10:27

From MCAS specialist Dr Afrin:

"The most common temperature-related complaint by far is a near-constant sense of feeling cold(without necessarily suffering any frank chills). ...subjective and/or objective hyperthermia and/or hypothermia, sense of feeling cold much of the time"

Reference:
https://www.novapublishers.com/catalog/product_info.php?products_id=42603 (in free pdf download)

Title: Re: Cold to the core!
Post by Ladybug on 02/10/14 at 01:29:00

Bruce Hart wrote on 02/09/14 at 18:10:27:

This is great information, Bruce. I came across additional good info and printed it all out (1/4" thick). I see a GI specialist this afternoon and will have this on hand to show to him. I like the tables and will highlight my symptoms in those.

Thank you so very much!

Title: Re: Cold to the core!
Post by KatFromMD on 02/10/14 at 05:54:29

Ladybug-
I've luckily been in Florida for the past month. We thought I would do better if we were somewhere warmer for the coldest part of the year, so of course it has been crazy cold down here this winter....but thank goodness we missed the even colder weather in MD! I don't want to go back home at the end of the week. :'(

Joan-
Your socks suggestion made me laugh because I've been needing to wear socks to bed for so long, it didn't even occur to me to suggest it! I wear ankle-high cotton athletic socks to bed every night.

Title: Re: Cold to the core!
Post by Ladybug on 02/10/14 at 13:35:25

Hi Kat,

So sorry that you have to leave Florida in a few days. What a bummer. I lived in Bethesda, Silver Spring, Baltimore areas for 25 years. Lots of good things about it, but I'm not into the snow and sleet anymore. I've lived in Florida and now California and lovin' the good year-round weather.

I wear socks to bed, too! [smiley=vrolijk_26.gif]

Title: Re: Cold to the core!
Post by Bruce Hart on 02/10/14 at 15:11:19

Yeah Ladybug, it's the most comprehensive publication on MCAS that I've come across. I'm glad you found more useful info in it. :) It has been very useful for me.

Title: Re: Cold to the core!
Post by Ladybug on 02/11/14 at 06:52:56

Bruce Hart wrote on 02/10/14 at 15:11:19:

Yeah Ladybug, it's the most comprehensive publication on MCAS that I've come across. I'm glad you found more useful info in it. :) It has been very useful for me.

Hi Bruce,

I printed this document out, highlighted a few areas and brought it with me to my GI doctor. He appreciated it so much that he asked to copy it. He is going to research everything to make sure that I get biopsied and that the labs use the right stains. I was so happy leaving that office. His staff said that I was his first MCAS, and that he does read and research everything. They will also call my allergist to make sure that they use the right drugs to put me under.

Thanks again for all your help. [smiley=engel017.gif]

Title: Re: Cold to the core!
Post by frugalmama on 02/15/14 at 13:37:02

I also experience this - my feet get cold, become extremely painful, and I literally can't fall asleep until they warm up. I take a warm bath every night before bed, and my hubby warms up a foot pack (mine's wheat, but rice, flax, etc. all work) and puts it into the foot of the bed for me so it's nice and toasty when I crawl in. It's been easily a couple of years since my feet have been able to warm up on their own, and it's very frustrating!

Title: Re: Cold to the core!
Post by Bruce Hart on 02/16/14 at 07:20:48

Wow Ladybug that's awesome. Sounds like an amazing doctor. And not only awesome for you, but now you're helping educate another doctor on MCAS which will make it easier for others to get diagnosed with it as well.

Title: Re: Cold to the core!
Post by Joan on 02/16/14 at 18:15:26

Ladybug, If you don't mind, it could be helpful to others to post the name and location of the doctor you are seeing so that other patients in your area might have the benefit of seeing him/her. There's a category/topic here where you can post the name and contact information.

Title: Re: Cold to the core!
Post by Ladybug on 02/22/14 at 17:27:39

Thank you for your good suggestion, Joan, I will do that! And thank you for all the time you spend volunteering as moderator! [smiley=thumbsup.gif]

Title: Re: Cold to the core!
Post by Ladybug on 02/23/14 at 08:37:30

Thank you for your good suggestion, Joan, I will do that! And thank you for all the time you spend volunteering as moderator! [smiley=thumbsup.gif]

Title: Re: Cold to the core!
Post by zippy890 on 02/24/14 at 06:14:23

Sometimes, when I'm reacting, my temperature will drop to 97F, or less. This always perplexed me in the past, as it felt like I had a fever. I would ache and chill, but then my temp. would drop, not increase.

When my skin is burning, I HATE the cold. A Far-Infrared Heater helps me sometimes.

Todd in Tenn.
35mg Doxepin
120mg Allegra
Rupatadine... soon, very soon