Hold and Cold with MS: Body Temperature Swings

By Donna Steigleder

4 min read

The thermostat in my house is currently registering at 77^o Fahrenheit. With all the activity I’ve been involved in today, I’m now sitting here melting at my computer. Meanwhile, my husband Lynn alternates between being hot and cold but mainly stays cold.

Body temperature before and after MS

Before the days of MS, Lynn’s body temperature ran hot. It could be the middle of winter and he would be outside in shorts and a T-shirt cooking on the grill. We used to joke that one day he would spontaneously combust into flames because he just radiated heat. That changed shortly after his diagnosis. He gradually became less tolerant of heat. Instead of setting the temperature indoors to a chilly 70, he would be satisfied to allow me to set it at a more comfortable level where it was no longer necessary for me to bundle in a blanket and wear gloves to watch TV. Then he went from being warm to the touch to being cold.

He was freezing

Lynn developed a urinary tract infection that was mistreated for a couple of months, resulting in his becoming very ill. His body was not able to fight off the infection and he became weaker and weaker. As his health declined, he became cold. At times it was necessary for me to wrap him in blankets, put fleece-lined footwear on him, cover his hands in gloves, and heat up sandbags to lie over his hands and against his body. He was freezing all the time.

Trying to regulate his body temperature

Eventually, he had to be admitted to the hospital, and while there, he aspirated and developed pneumonia. It wasn’t caught at first, because he had no fever. He was very lethargic; sleeping all the time. His blood pressure was low as was his pulse, and his body temperature simply did not register. For almost two days the staff just attributed the temperature difficulties to equipment. Finally, one of the care partners got a rectal thermometer because she felt something just was not right. Rectally, his body temperature should have been a degree higher than orally; however, his body temperature still did not register. When they finally were able to get a reading, his body temperature was 90^orectally! He was immediately put into the ICU and a heat blanket used for hours to gradually bring his body temperature back to normal.

His temperature fell when he was sick

After that, any time he was sick, his temperature fell rather than rising. He was also cold all the time after that. We discovered that he was severely anemic and had almost no ferritin storage (ferritin is a form of iron that is stored in the body as a reserve for when the hemoglobin doesn’t have enough iron to circulate throughout the body as needed). The cold was a bone-chilling cold. Regardless of the amount of clothing he wore or if he was using a heating pad, he stayed cold.¹

Anemia and thyroid problems

As his ferritin level improved, and his blood levels approached normal, he gradually began to warm up again but he continued to have difficulty with temperature regulation. He would be cold so he would drink hot tea. Then he would feel too hot and drink cold water. All day, he alternated between hot and cold, and rarely did he actually have a comfortable temperature. In looking into that further, we discovered his thyroid levels were off probably due to the Rebif he had been using. Now, almost a year later, his thyroid is almost back to normal (he’s off the Rebif), but he still has difficulty regulating his body temperature.

Switching between hot and cold

If he’s tired, feeling ill, stressed out—he becomes cold. If he’s in a hot room, taking a hot shower, drinking hot liquids—he tends to become overheated and has a meltdown. Essentially, he doesn’t seem to be able to regulate his internal temperature and has to use external measures to make the necessary adjustments. His doctor has never said this is the result of MS, but I wonder if it is. I know that the anemia, ferritin deficiency, and hypothyroidism certainly each contributed to his struggles to stay warm, but now that most of his “levels” seem normal, he still has trouble. I know that people who have MS often say they cannot tolerate heat.

Planning ahead

How does this all affect me as his caregiver? I have to plan for both hot and cold. When we’re going out, I know that even if it’s warm outside, I might still be running a little heat or need to get him something hot to drink for his comfort. I also know that he can’t tolerate sitting outside in the sun or being out on the deck during cool breezes because his body doesn’t seem to do what is needed to help itself become comfortable. So, is this caused by MS? It’s anyone’s guess, but it seems like it could be to me.

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lindsayrof Member
We used to take long sleeved shirts and henleys, and cut the arms off at the shoulder. Then we would take that arm piece and sew in elastic. Then my uncle would wear a polo for the day. He would wear these 'sleeves" and was able to hook a finger around the elastic and slip it up or down depending on how he was feeling. When they are up they just look like he is wearing a long sleeved shirt under a polo. So much easier than trying to get jackets and sweatshirts on and off with his contractions.
1. Donna Steigleder Moderator
 What a great idea! I bought him sleeves that were similar in nature but I bet it's a lot cheaper to cut the sleeves out and create your own. Thanks for sharing!
laliah Member
This sounds exactly like my hunny. It drives us both crazy especially since we share a home office. I'm too hot and he's still freezing. I was in shorts and a tanktop this winter doing my work while he had the electric blanket on his legs. I'm surprised about your comment about not knowing that MS patients have difficult in regulating their own body temp. We've been told that there's a direct correlation. He won't sweat until his temperature is much beyond normal, which overheats his "wiring" or nervous system much like any electronic piece of equipment. We'll see much more weakness and loss of coordination until his temp is down. I think the only time I've seen Bill sweat is when he's broken a fever. And they are rare too because most of the time he's has a sub-temp when he's sick. We've assumed that his freezing all the other times is from the lack of muscle tone to keep the body warm. For overheating, we use the gel neckwraps that perspire for him. They're a homemade, not a fancy off the shelf item. A misting spray bottle and a personal fan helps too. But lately, it's been staying in and having people over more.
Laura Kolaczkowski Moderator & Contributor
The problem with autonomic functions and MS can include temperature regulation for many people - I can't imagine dressing for one climate while living in another (heat vs cold!) but I know we all do what we have to do. Good luck in staying cool over the summer months.