A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Heat intolerance - common in ME/cfs

Discussion in 'General ME/CFS Discussion' started by Thinktank, Jul 24, 2018.

  1. Thinktank

    Thinktank Senior Member

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    Is heat intolerance a common symptom in ME/cfs?

    It's currently very hot in my country and i just can't cope with it. Every year the heat intolerance becomes worse! It's not just the weather but also hot food or a warm shower that makes me feel ill.
    One thing that really stands out is the vasodilation in my hands and feet, that in turn worsens my orthostatic intolerance. I also urinate more than normal and my muscles hurt. It's like my muscles are completely drained from any fluid. I just had a cramp in my neck! Magnesium doesnt help and makes the vasodilation worse.
    ALso my neck is so stiff and hurts, like someone just hit me in the neck / base of skull.

    So, anyone else with really bad heat intolerance?
     
  2. AndyPandy

    AndyPandy Making the most of it

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    Yes. My ME is much worse in the heat. Makes me feel deeply ill.
     
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  3. Sushi

    Sushi Moderation Resource Albuquerque

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    Probably most of us here. It is part of dysautonomia. I need to wear a cooling vest in order to go outside in the summer. Mostly I don't go out until after the sun goes down though.
     
  4. Wolfcub

    Wolfcub Senior Member

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    @Thinktank ...how are you with a little salt? If a little is okay for you it might help to have a small salt lick in extremely hot weather. Two months ago our heatwave started and I simply couldn't bear it. It made me feel twice as bad. Just generally physically oppressed. I would buck up a little after a tiny salt lick, some honey and water. I use only pure rock salt now, though something nice like genuine Himalayan salt would be better.
    If you urinate more frequently you might be losing a lot of salt from the body.
     
  5. Murph

    Murph :)

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    I can't handle too much heat either. But I get by understanding why. The reason we're heat sensitive is heat causes blood vessels to relax too much, which causes blood pressure to drop, which is dysautonomia our bodies can't handle.

    You can partially manage this by using techniques to boost blood volume - hydration - and by tricks to reverse the vessel dilation - ice water and salt and medications - and by avoiding straining the heart - getting horizontal when possible so the heart isn't working overtime trying to pump blood around a saggy system and avoid raising your hands above your head.

    It's also just about being hyper-aware that heat is risky and doing everything you can to avoid direct sunlight/exercise/hot showers on hot days.
     
    Last edited: Jul 24, 2018
  6. Wishful

    Wishful Senior Member

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    I haven't noticed any increase in symptoms from heat, but I'm really happy to be living in my Alberta Foothills area. Presently wearing a fleece jacket and toque for warmth. It was 4C this morning (that's refrigerator temperature for those of you on the silly Fahrenheit scale). :thumbsup:
     
  7. lafarfelue

    lafarfelue Senior Member

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    I'm jealous, that sounds so perfect.:cry: Please enjoy it a bit extra for me :)
     
  8. Judee

    Judee Senior Member

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    That is very useful to know. I never understood what was going on and my blood pressure is low already. Thank you, @Murph.
     
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  9. Moof

    Moof Senior Member

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    Yes! In my case it's because I have very low blood pressure, and of course heat makes it drop further. It was 27 degrees here yesterday, and I had a rheumatology appointment where they always start with weight and blood pressure. The nurse was really alarmed, and said if anyone came into hospital after a car accident with blood pressure that low, they'd be admitted to the high dependency ward! I said, "Welcome to the everyday life of an ME patient...." :rofl:
     
  10. mariovitali

    mariovitali Senior Member

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    You can count me in too
     
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Not me, I am the opposite: heat is not a problem, love it, can bake in the sun all day...but am very sensititive to the cold, painfully so in my hands and feet, oncontrollable shivering and my muscles tighten or freeze...I guess the blood is leaving as my vessels constrict.
     
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  12. mariovitali

    mariovitali Senior Member

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    @ScottTriGuy

    Didn't know that the contrary could be possible, thanks for pointing this out.
     
  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    To my simple mind, our heat/cold 'sensors' are either up or down regulated. A gentle breeze can trigger my shivering.
     
  14. Thinktank

    Thinktank Senior Member

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    A bit of salt is helpful for my dysautonomia but it doesn't do much in terms of heat intolerance.
    I have increased my salt intake and lowered my fluid intake as i don't sweat much. High fluid intake makes me sick, no idea why.
     
    Last edited: Jul 25, 2018
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  15. Thinktank

    Thinktank Senior Member

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    That sounds great, wish it could be 4C all year round!
    i'll soon be moving to a place where the average temperature in the summer is 19C and in the winter 7C. It does rain a lot over there but that's what i like! Some people think i'm crazy, i really enjoy the fall and winter with rain and snow.
    I'm sure that an ideal temperature will have a significant positive impact on my quality of living. That and a pristine surrounding with little to no air polution, can't wait!
     
  16. Thinktank

    Thinktank Senior Member

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    Do you have raynaud's syndrome?
     
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  17. sikejsudjek

    sikejsudjek

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    I hate the hot weather. After a couple of days my ME/CFS starts acting up. I've now invested in an air conditioning unit as I'm sick and tired of feeling ill, and having to cancel work (I teach at home). D ribose helps, but I have to reduce activity. I also get the symptoms of heat exhaustion quickly.
     
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  18. Judee

    Judee Senior Member

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    Or up AND down. I still use an electric blanket during the summer set at med-high or high. We keep our a/c close to 80 but I'm still freezing and even when we don't have it on, I need that blanket.

    Still going outside in the heat can drain me. Go figure!!! :confused:
     
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  19. J.G

    J.G

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    Yup. I really suffer in high temperatures. In winter my level of functioning is noticeably higher (albeit still low).
     
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  20. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Nope, don't think so, my hands don't turn white / blue when they're cold.
     
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