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Do people feel better in cooler temperature?

Discussion in 'General ME/CFS Discussion' started by Legendrew, Sep 6, 2013.

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Do you feel better in colder weather?

  1. Yes much better

    25 vote(s)
    47.2%
  2. Yes but only a little

    10 vote(s)
    18.9%
  3. Neutral - I feel the same as always

    0 vote(s)
    0.0%
  4. No I feel worse in cold weather

    18 vote(s)
    34.0%
  5. I feel better but pain symptom is worse

    0 vote(s)
    0.0%
  1. xxRinxx

    xxRinxx

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    The beginning of my illness I was normal weight, then as I got sick i gained a lot, even though i wasn't eating badly and was actually on a strict diet..Everything I ate seemed to puff me up and it wasn't a normal weight either, i just looked..squishy..haha. Its insanellyyy hard for me to loose weight now and the CFS made me gain a bunch, and I can't figure out why. I think its hormonal but who knows..the worse my CFS got, the worse heat intolerant I was. Its all surface weight too btw, its not the type of fat that builds around the organs, but the kind of fat that's just under the surface..I would look up the scientific name for those but I'm just too dang tired, haha.
    rosie26 likes this.
  2. Raindrop

    Raindrop Senior Member

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    Hard to describe how fragile I feel in heat. By "heat" I mean anything over 73 degrees. Body
    cannot adjust and feel weak, faint and nauseous if it is anything more than 75 degrees.
    Hard to take enough clothes off!! It is one of my worst symptoms, up there with
    exertion, cognitive and the rest of it.
    ahimsa, MeSci and Fredricktoo like this.
  3. Mij

    Mij Senior Member

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    I weigh 50kg and I love the cold. Have you tried organic coconut oil? Your body uses it as fuel for energy and I feel that it heats up my body, I don't gain weight despite how much I eat, I ate 2 gallons to myself in the last 6 months, Yes my total cholesterol and LDL went up but so did my HDL by a lot!

    Now that the temps are cooler in the evenings I can finally go out power walking- I feel more alive.

    I don't do much during the summer months and it has a negative effect on my circulation.
    Artstu and rosie26 like this.
  4. rosie26

    rosie26 Senior Member

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    Hi Mij

    I haven't tried coconut oil, but always been a huge fan of coconut. I always feel good after eating it.
    That's great your HDL's went up :) I think coconut is a very good food, like you I would eat it and not worry as well :D

    I haven't been able to go over 60kg since falling sick 12years ago. When I get close to 60kg it triggers a relapse, it has happened so many times now that I know it is some kind of regulation ( not sure if that is the right word, can't think ) problem with ME I think. I guess like exertion =PEM. Extra weight = relapse, for me that is. My body just won't tolerate extra weight.

    Interesting to hear you cope with the cold Mij and not carrying a lot of weight at same time. x
    Mij likes this.
  5. Fredricktoo

    Fredricktoo

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    Clearwater, Florida
    This describes my difficulty with heat exactly. I couldn't have described it better if I tried. I've tried explaining this to doctors, family, friends and they all shrug their shoulders. I know what to expect with most of my symptoms but getting caught in the heat above 85 degrees or so for more than a half an hour and I feel so sick that I wonder how it is that I could feel any sicker. Almost a total loss of the ability to function. I live in Florida and I dread an extended power outage with the loss of air conditioning. I keep the thermostat set to 73 all year.
  6. ukxmrv

    ukxmrv Senior Member

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    London
    One of the reasons I asked about Halpogroups in a poll was this trait in group "J"

    http://en.wikipedia.org/wiki/Haplogroup_J_(mtDNA)

    Genetic traits[edit source | editbeta]

    It has been theorized[by whom?] that the uncoupling of oxidative phosphorylation related to SNPs which define mt-haplogroup J consequently produces higher body heat in the phenotype of mtDNA J individuals. This has been linked to selective pressure for the presence of the haplogroup in northern Europe, particularly Norway.[6] J mtDNA has also been associated with HIV infected individuals displaying accelerated progression to AIDS and death.[7] The T150C mutation, which is exclusive to but not definitive of, the J2 subclade of Haplogroup J may be part of a likely nuclearly controlled general machinery regarding the remodeling & replication of mtDNA. Controlling a remodeling which could accelerate mtDNA replication thus compensating for oxidative damage in mtDNA as well as functional deterioration occurring with old age related to it.[8]
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    My ME is worse in winter. I thought it might be because my body spends so much of its limited energy on heat production. I finally turned my thermostat up some last winter. I was more comfortable, but I am not sure my ME improved any.

    Really hot weather drains me, 90F and above, especially if it is also humid.

    Years ago I read a book that was primarily focused on maintaining health. It had one chapter on dealing with health problems. I checked what it had to say for the various health problems that my parents and I have. For CFS is said "stay warm". CFS was the only one that I read that said that.

    ETA: I have gained about 25 lbs during the course of my ME and I don't think it has made any difference in my cold/heat tolerance.
    rosie26 likes this.
  8. Raindrop

    Raindrop Senior Member

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    Fredricktoo,
    Glad you appreciated my post and good to know I am not alone!! It is just so extreme, no one can usually
    relate. I carry a fan in my purse and also WATER and also a portable fan with a spray mister ON TOP of all the rest!!!
    I have SEVEN fans in a 2 bdrm apt along with one portable AC in my bedroom. Can anyone believe this level of
    need?? I even carry a fan in my car in case I am to go out where I need it and a week ago went everywhere
    with ALL of those things (purse fan, water, spray mister and portable fan!!!!!) Even then I was dying and got SO sick that I have not been able to leave the house all week!!!! Stuck in bedroom with the portable AC feeling just at my worse because it is about 90 outside and I need it to be 73 or lower. I can quickly feel like I am going to pass out and rather it not happen. Severe weakness and nausea as well as feeling of being "poisoned".
    Well, I guess this is even more description than I had before!! Got carried away!!! :) PLEASE STAY COOL!!!!
    I FEEL FOR YOU in Florida!!! Can you get a battery type generator/AC for emergencies? Do they make them?
    Fredricktoo and xxRinxx like this.
  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    I don't think weight has made much difference to me. When I was overweight I recall being extremely cold in temporary accommodation. I am slim again now, but still can't cope with the heat.
  10. peggy-sue

    peggy-sue

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    I don't think weight interacts with temperature as far as ME goes.

    The only problem I've had with being overweight is having to carry it around all the time, so it uses up precious energy for doing other things.
    I've been both over and underweight while ill. I'm about right now. (BMI = 23.)

    I know BMI isn't a good system, but when loosing weight, as soon as I hit a BMI of 25, I really felt a difference in how easy it is to move around. I did wonder then if there wasn't some justification for a figure of 25 being touted.
  11. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    My experience is similar.
    peggy-sue likes this.
  12. Legendrew

    Legendrew Content team

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    UK
    Interesting to see no one has entered a neutral feeling towards temperature. Goes to show just how wide ranging a symptom of ME that heat intolerance eitherway is.
    anne_likes_red likes this.
  13. peggy-sue

    peggy-sue

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    Thanks for adding your experienceof the BMI at 25, MeSci. I do find this interesting.

    BMI isn't a good system for me because I used to train intensively at swimming when I was child - I've got legs like tree-trunks, thick and chunky and all solid muscle. :D
  14. xxRinxx

    xxRinxx

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    Paducah, Kentucky
    I am fascinated with all the people that are slim or underweight with me/cfs because i can NOT loose weight with CFS because I can't exercise and my cortisol is so high. I lost about 15 lbs last feb when it was cold and I could work out, but as soon as it got hot i gained it all back almost instantly. It fluctuates like mad and winter is the only way my weight can go down. I have a great diet(like most with this eh? haha) and it makes no difference what so ever. The CFS made my hyperglycemia worse by far, but i still eat balanced, so frustrating. Least fall is soon for me! haha
  15. rosie26

    rosie26 Senior Member

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    I have the opposite xxRinxx, I struggle to put on weight, I just cannot hold on to any weight gain. The only thing I can think of is that the extra weight causes an increase in energy to carry around and that triggers a relapse. I seem very sensitive to the change in weight. x
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    To clarify - my experience has been similar to yours but the BMIs have not been identical. At one point I went down to about 19 (not helped by struggling to get enough food in hospital when already malnourished!). A few years later it crept up to almost 30. Now I have got it down to a healthy 21 approx, with less fat and more muscle, and it seems to have stabilised at that. But I can't recall any significant changes in temperature tolerance. Before ME I could cope with wide temperature variation; with ME I cannot, and I also have sudden spontaneous perceptions of large temperature swings, accompanied by sweating or goose bumps depending on which extreme it takes me to!

    I guess being short I have bonsai tree trunks. :lol:
  17. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Working out - with ME?! :eek:

    I can't exercise. I just go about my essential tasks. But I lost 7-8 kg in a few months, by cutting out gluten and going low-carb, and possibly aided by the supplements I started. Fat fell away and was replaced with muscle. I wasn't even trying to lose weight!

    What do you mean by a great diet? It may be relevant.

    Re exercise, maybe this thread would interest you.
  18. Raindrop

    Raindrop Senior Member

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    I cannot loose weight to save my life. I control portions/ eat lean and low fat and low sugar for the
    most part. I mean before I got THIS sick I could always loose when I tried. Now it is impossible.
    I try to move a little in water when I am able (infrequently), or walk a bit, but can't ever do enough to
    have it burn calories. I posted above about EXTREME heat intolerance. I also have hypoglycemia
    and so have to eat very frequently so as to avoid fainting. That makes the problem even worse. ARGH!!!
  19. Mij

    Mij Senior Member

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    MeSci some of us can do some sort of low impact aerobic exercise with ME. I can power walk for an hour 2-3wk when it's cooler weather but only in the evenings, during the day I have to lie down every 2hrs and get adequate rest between cooking, cleaning etc. I'm housebound during the day unless I have someone drives me to go shopping, I can not walk very far or stand upright for over 2hrs MAX. When the evening comes around my energy levels go up, it's like I'm 2 completely different people from day to night. Only one sister understands this but no one else who's not sick can- not even my doctor. I don't know if I have OI, POTS or NMH but it sure feels as though I do at a mild level and I'm not sure whether people who have this feel better after 6pm.

    For the most part I don't get PENE the day after power walking unless my immune system is acting up ie; viral. So I am careful. I don't power walk every week though, it depends on whether I have appt's to go to etc. My energy expansion is planned in advance and tightly managed, I can not be spontaneous. Some of us can do some sort of low impact aerobic exercise such a brisk walking. I would never go beyond that even if I felt "better" because it's contradictory and long term harmful.
    Artstu likes this.
  20. Raindrop

    Raindrop Senior Member

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