Editor’s Note: Lura R (East Texas, USA) primed the Land of Chat “Sharing Pump” on June 13, 2020 with an eight-word post. She wrote: “Does everyone else stay cold all the time?” What follows is the response from 18 kindred spirits. PRP Facebookers can access the unabridged version. If you want to add your own two cents, use “Leave a Reply” at the end of this webpage.
Tami C — St. Paul, Minnesota, USA
I was all over….in the same day. So hard to wrap up when it is 80 degrees, then a few hours later you can tell you need water course your to hot but don’t sweat.
Leith W — Toowoomba, Queensland, Australia.
I was constantly freezing. I found wrapping up in a fleece blanket helped me a lot. I used the velour side so my shedded skin didn’t get caught up all the though the fleece.
Anita P, East Fultonham, Ohio, USA
Our bodies have mechanisms that operate every system in our bodies. They are malfunctioning because all of our “resources “ are being used to make skin cells, even when we aren’t shedding profusely. The body doesn’t know what it’s supposed to be doing anymore and as we get better it’s relearning, so to speak, what it’s supposed to be doing. Like a stroke victim learning to walk again.
I’m three years in and I still have to regulate my body temp with clothing during the day and sheets and blankets at night. Layering is the key. Cold then warm then too warm then back to cold since you removed a layer or two. It’s almost like you have done it so much you don’t think about the process anymore you just do it.
My arms and areas on the rest of my body burn/sting from the cool ambient air. Wether it’s moving (fans) or not.
Even though I sweat some my body doesn’t know what to do with the process. No cooling happening. When I get overheated a/c and fans are my only option other than a cool shower. Shower would be my Emergancy back up.
Murray R, Surrey, British Columbia, Canada
A heating pad for your favorite chair and one for your vehicle , if you have one that is. My wife offered me hers and it worked like a charm. Most have timers on them so you don’t get too hot.
Carolyn D, Willis, Texas, USA
I do a lot. I have an electric blanket on the bed & an electric throw by my chair.
Willis M, Waynesboro, Georgia, USA
I wish. I am always super hot. Body fevers.
Barbara Y, Winter Park, Florida, USA
Yes, during acute stage–for me, this was spring and part of summer in Florida, and I was freezing!
Michael D, Houston, TX, USA
During my acute stage we had to keep the house at 86° because not only was my body unable to regulate temperature, I was covered in Vaseline and it was painful to wear clothes. If we allowed the temperature to go any lower I would start shivering.
Nicole E, Orange County, California, USA.
During the acute stage definitely.
Verner H., North Yorkshire, England, UK
Yes. It has eased a bit, but sometimes I felt like I was freezing to death.
Eileen S, Philadelphia, PA, USA
Yes indeed! In the severe stage. I could not get warm! Teeth chattering even though I was bundled up! And it was June & July &
Carol T, Swaffham, England, UK
Haha!! Shiver when it’s hot and throw open the windows in the winter cos your internal central heating button isn’t working!! Every part of your body goes haywire and has a life of its own. It does things you wouldn’t have thought possible. You have to live it to really believe it, sadly!! Expect the worst and then you may be pleasantly surprised ……But don’t bet on it!!!
Linda B,Y Owestry, Shropshire, England, UK
Yes, during the acute stage of PRP. But now, living with the remnants of the disease, my body is unable to regulate temperature and I am hot most of the time.
Peter M, Camden Head, New South Wales, Australia
Cold??? I have basically been boiling. Then I lost my concept of ambient temperature but I still was not cold.
It took 4 months before I could shower above luke warm, because I was always so hot.
Barbara F, St. John’s, Newfoundland, Canada
I am cold most of the time despite what the temperature may be. My clothes always feel damp from ointments, cream and lotions. I have been on this journey for 25 months and I feel I am not going to see the end of it for a long time.
Beth W, Tampa, Florida, USA
I live in Florida and wear turtleneck long sleeve shirts and long pants.
Burt U, Kenady, Texas, USA
Always cold– could not sweat– 100 outside and still needed a blanket– if u start to sweat again ur on ur way to recovery– god bless
Laura T, Middletown, Connecticut, USA
I wore a sauna suit. It keeps the body heat and moisture in.