Featuring Marie Namey, RN, MSN, MSCN
Mellen Center for MS Treatments & Research, Cleveland, OH
Question: I find that I am often hot, then cold, then hot again. It seems my internal thermostat is messed up and I am well past menopause. Is this caused by MS and why?
Answer: You are not alone in experiencing these symptoms. We often hear from our patients that they feel hot or cold for “no good reason.”
The medical term is “temperature dysregulation,” meaning that it’s difficult for the body to maintain normal temperatures and results in periods of feeling hot or cold when there has been no change in the actual temperature indoors or outdoors. MS can cause temperature dysregulation. This temperature dysregulation can also make MS patients susceptible to extreme hot or cold.
Some individuals with MS may have impairment of autonomic functions, the functions that are not thought about consciously for the systems to work. Autonomic dysfunction develops when the nerves are damaged. Interestingly in a recent “Patients Like Me” survey, 69% of patients with MS who replied said that their temperature dysregulation is severe or moderately severe.
Also to avoid attributing every symptom to MS you should be checked for other causes of your symptoms such as anemia, thyroid disease, poor circulation, malnutrition, diabetes, or vitamin deficiencies. I always recommend regular health checkups and open dialogue with your MS health care provider and primary care provider.
I have MS & I can find myself waking up in the middle of the night & I’m so hot my pyjama top is soaking wet
That happens to me.
I am the same way. All summer I felt hot yet my mother was freezing in sweatpants and a sweatshirt in the house.
My go to answer for temperature dysregulation is that my thermostat is broken much like a car that needs for its to be replaced. (Yes, reveling my history of driving older vehicles that have needed the part to be replaced. If it was only that easy with the MonSter in tow!
Nice to hear from you Marie! You’re an excellent MS Team Member.
Don’t know if I have an underlying disease but I definitely have temperature dysregulation. Constantly changing from sweating for no reason to being chilled. Also, have leg pain and dead toes. Anybody out there have any suggestions?
Thank you for reaching out, Leslie. I’m sorry to hear about the temperature issues you’ve experienced. Hopefully by working with your doctor you can find ways to help manage these symptom issues. Through MSAA we offer a cooling vest program that provides ice-pack cooling garments that can be worn on the body, if this can be of help in times when heat is an issue, https://mymsaa.org/msaa-help/cooling-products/. You can also talk to others living with MS to gain their feedback and experiences through MSAA’s online peer support forum, My MSAA Community, https://mymsaa.org/msaa-community/my-msaa-community-forum. I hope you’re able to find something that can help soon, Leslie. If you have additional questions please reach out to MSQuestions@mymsaa.org. Thank you and take care. Angel, MSAA Client Services Specialist