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Freezing from the inside out!

Updated: Apr 17


Core body temperature is usually around 36-38°c.


Medication, weather can affect body temperature, as can other hormones or disorders but for some of us with Ehlers-Danlos syndromes EDS, Joint hypermobility syndrome, JHS or hypermobility Spectrum Disorders HSD, our autonomic nervous system malfunctions which causes swings in body temperature.


Dysautonomia is a spectrum of various different issues that can affect our autonomic nervous system which regulates and maintains heart rate, blood pressure, digestion, dizziness and also body temperature.


For some of us, cold from our inner core seems to emanate out across the rest of our body.



Many of us have Raynaud’s phenomenon; cold hands, feet maybe nose, but this inner cold seeps from the inside and freezes us.


It can be a boiling hot day, but we are still freezing, covered in blankets, hats, scarves, but freezing and unable to move or even twitch until the biting cold eases off.

We can’t talk or move, visions of glaciers, mountains seem apt.

These episodes can often last 20-30 minutes. Gradually our inner temperature raises again and we can remove the extra layers of clothing with relief.

If other people are around, they will look curiously at us, if not aware this is a common occurrence.

More information from http://www.dysautonomiainternational.org

Written by Jane Green Chair SEDS


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