With aHUS, the regulation of my body temperature is an uphill battle

During the day, I'm always cold, but at night, I'll sweat feverishly

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by Shalana Jordan |

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A shiver went down my spine. I crossed my arms and clenched my fist to try to warm up. My teeth began chattering, and my muscles and limbs began to curl. I felt that my body was shutting down. I was freezing.

My rare disease, atypical hemolytic uremic syndrome (aHUS), forced me to spend nearly two months in an intensive care unit, where I nearly died from its onset in 2020. It has caused a slew of permanent medical issues that follow me around to this day. And I’ll receive treatment for the rest of my life.

Some consequences of this chronic illness and its treatment are to be expected, such as fatigue, hair loss, an increased risk of infections, and chronic kidney disease (CKD). But there are others that doctors couldn’t have prepared me for, such as bone pain, muscle weakness, severe and uncontrolled hypertension, nerve damage, and multiple surgeries.

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Either too hot or too cold

One of my most unexpected symptoms is temperature intolerance. That may sound inconsequential, but it’s the issue I deal with most frequently. During the day, I’m always freezing. I’ll shiver, my fingers and lips will turn purple, and my teeth will chatter.

Conversely, when I’m sleeping or have just received treatment, I’ll experience heat intolerance. I can’t handle being in the sun immediately after treatment. When I’m sleeping, I’ll overheat and become feverish. I’m frequently awakened by the sweating that accompanies these high fevers.

Cold intolerance is a symptom of hemolytic anemia, which is caused by aHUS. Stage four CKD also causes a buildup of uremic waste, which can decrease my core body temperature.

Last summer, the temperatures in Columbia, South Carolina, where I live, hit the lower hundreds. Despite the intense heat, I still wore fuzzy slippers, pajama pants, and a heavy bathrobe at home. But it doesn’t seem to matter what I wear — if I’m awake, I’m always cold.

If I go to the grocery store, I know it’ll be too cold for me to bear. Sitting at restaurants can also be difficult because of the air conditioning. To compensate, I always have a jacket or sweater with me.

My household is full of males who get hot easily, so they like to turn down the temperature of the air conditioning. Meanwhile, I’ll have a heated blanket on my side of the bed. When I walk out to the garage during cold winter months, the drastic drop in temperature from inside the house makes me feel like my body is being forced into a fetal position. The cold is debilitating, to say the least.

The way my body overheats at night is bizarre as well. My fiancé says that my skin feels like it’s burning. I’ll toss and turn as I overheat. I don’t typically sweat at all during the day, even while I’m exercising, so it’s strange for me to wake up sweating.

I never thought temperature intolerance and dysregulation would be so constant for me. The worst part is that it makes my bone and muscle pain from treatment even worse. Our next large purchase is going to be a hot tub to help with this issue. When that day comes, it’ll be a fun “perk” of having this disease.

Do you experience heat or cold intolerance? Please share in the comments below. 

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to aHUS.


Bonnie Corley avatar

Bonnie Corley

I am glad you addressed this issue. I didn’t know if I was the only one that dealt with this but it seemed overlooked whenever I mentioned it to doctors.


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