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-   -   Extra sensitive to heat or cold because of MS? Join the club (http://forums.activemsers.org/showthread.php?t=3067)

ActiveMSers 07-09-2019 02:14 PM

Extra sensitive to heat or cold because of MS? Join the club
 
Heat issues with MS are especially common, but having issues with cold too is also a frequent problem. We need our temps to be in the Goldilocks zone: not too hot, not too cold. -D

A patient-centred evaluation of thermal resilience practices in temperature-sensitive people with Multiple Sclerosis

Aikaterini Christogianni et al
THERMOSENSELAB, Environmental Ergonomics Research Centre, Loughborough University,
Loughborough, UK

Introduction: Multiple sclerosis (MS) is a neurodegenerative disease characterized by temperature sensitivity, where changes in body temperature induce transient symptoms worsening. There is no pharmacological intervention for this condition and patients often develop their own thermal resilience practices. The aim of the study was to survey the experience of temperature sensitivity
and the strategies used to combat it, in MS.

Method: 458 people with MS (58.7% relapsing-remitting; 20.7% secondary-progressive; 14%
primary-progressive; 6.6% unknown) completed an anonymous online survey. The questionnaire comprised sections aimed at characterizing participantsí general medical history; the symptoms worsening as a result of heat or cold, and thermal resilience techniques for heat and cold sensitivity.

Results: Overall, 53% of responders reported suffering from heat sensitivity, 15% from cold
sensitivity, and 32% from both. Fatigue (79%), weakness (60%) and balance difficulties (56%) were prominent heat-induced symptoms. Muscle cramps (43%), fatigue (40%) and poor walking (36%) were prominent cold-induced symptoms. Participants reported exercise (91%) and long periods of inactivity (92%) as the greatest triggers of heat and cold sensitivity, respectively, that affects their MS symptoms. The most common thermal resilience practices in the heat were wearing lightweight, breathable clothes (95%) and using fans (91%) (p<0.01), whereas wearing layers of clothes (93%) and staying in a heated environment (91%) (p<0.01) were commonly adopted to combat cold sensitivity.

Conclusions: Temperature sensitivity in MS worsens quality of life and disease management. The patient-centred information presented here will help guiding evidence-based interventions and investigations that are individually tailored to the specific experiences of temperature-sensitive people with MS.

GoatHerder 07-15-2019 12:26 PM

It's The Cold
 
Heat, I can work outside all day in the heat without issue. I love the summer!

But winter, even here in Florida where it's mild, the cold is intolerable! My M.S. has me feeling cold, as intense pain, especially in my legs and feet.

Being from Alaska, and longing to return home one day to live again; it would be impossible because of this.

Drillerdou 07-17-2019 11:18 AM

The idea of having to pick up and relocate just to be comfortable is a daunting concept. Just this week I read an article about Scotland and how they are going to have a 3 day heatwave of 22c.... sounds glorious to me, were around 30 with a humidex around 38 and it's wrecking me

bski864 08-16-2019 12:59 PM

Quote:

Originally Posted by GoatHerder (Post 11004)
Heat, I can work outside all day in the heat without issue. I love the summer!

But winter, even here in Florida where it's mild, the cold is intolerable! My M.S. has me feeling cold, as intense pain, especially in my legs and feet.

Being from Alaska, and longing to return home one day to live again; it would be impossible because of this.

Someone else who understands! I am originally from Michigan, and winters were just so beyond brutal. I'm in Georgia now (which is still not my ideal locale), but even as "cold" as it gets here, there are so many times in winter where I would rather stay cocooned in my bed than face the pain of outside. Outside bad.

GoatHerder 08-17-2019 03:26 PM

Quote:

Originally Posted by bski864 (Post 11131)
Someone else who understands! I am originally from Michigan, and winters were just so beyond brutal. I'm in Georgia now (which is still not my ideal locale), but even as "cold" as it gets here, there are so many times in winter where I would rather stay cocooned in my bed than face the pain of outside. Outside bad.

Yup, I even have an old fashioned red union suit with the flap in the back, which I wear a LOT in the winter here! *(the flap being useless now, as I've had a colostomy for 4 years to go with my M.S.)


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