Ask the Expert – Temperature Dysregulation

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.

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

Comments

  • Sheena watts says:

    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

  • Cj Crawford says:

    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.

  • Leslie Watkins says:

    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?

    • Angel Blair says:

      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

  • Janice Brown says:

    Hello. I suffer from heat intolerance..aka broken internal thermostat but have Thyroid disease as well. Are they both causing this?!? Ty Janice

    • Angel Blair says:

      Hello Janice, thank you for reaching out to the MSAA. I am sorry to hear of the symptom issues you experience. Heat intolerance is a very commonly seen symptom in MS, and from what I’ve read it looks to be a possible symptom associated with thyroid disease as well. The MSAA offers a Cooling Distribution Program that provides ice-pack style cooling garments that can be worn on the body to help with heat sensitivity issues. There is an application and program requirements for this assistance, and you can find this information on our website here if it can be of help, https://mymsaa.org/msaa-help/cooling-products/. I would also suggest talking with your doctor about both conditions and your heat intolerance symptoms to see what recommendations they may have as well to help manage this. Thank you again for reaching out and take care. Angel, MSAA Client Services

  • Himani Tapasvi says:

    I’m suffering from temperature dysregulation . I suddenly feel chilled and very very cold and my body temperature is low at that time . This happens though outdoors is warm and rather hot . It’s weird and I am even getting these chills in middle of night . Can this be due to MS ? I have it for 20 years

    • Emily says:

      Thank you for your comment. It is always best to contact you doctor, who is most familiar with your case.

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