The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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icy cold, can't warm up

Discussion in 'General ME/CFS Discussion' started by Min, Dec 16, 2014.

  1. Min

    Min Guest

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    When I am in a major flare (am in one now) I become absolutely icy cold despite the electric blanket, no matter how many layers and duvets I pile on or how I heat the room .

    The fibromyalgia pain also becomes unbearable and very persistent although this may be the flare and not the feeling cold. Stretching exercises do not work on the pain in a flare.

    I wondered if anyone who experiences the same thing has any advice on overcoming the cold feeling please?

    (I gave up with doctors and their contempt for our illness here in the UK long ago, it is useless seeing them. )
     
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  2. eafw

    eafw Senior Member

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    Hi Min, can I ask are you able to take your temperature to check whether it is an internal drop in temp or is it a sensation of cold with "normal" body temp ? Do you have a drop in blood pressure too ?

    I get chilled very easily, when tired or a bit over-exerted and can measure this as a drop in body temperature, so tend to treat it as a mild hypothermia. So, don't really know what to suggest apart from the obvious. Hot drinks, carbs (glucose tablets if you manage these), soup. Wrap up. Head, hands and feet warm. Sleep maybe or gentle massage to get the circulation moving. Muscle relaxants might help with the pain, again if you can take them. Licorice will bump up your bp if that might help ?

    There is a school of thought that says a dunk in cold water will reset your thermostat, but really would not recommend that at all for someone who is already poorly.
     
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  3. taniaaust1

    taniaaust1 Senior Member

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    Sorry Min, thou I used to get that symptom a lot., I never found anything to help it or found out what causes it. Its aweful feeling soo cold. It was like the cold was deep within and like radiating out from me so heat on my skin just didnt help, hot bath couldnt help it much. For me too it was more common when I was flaring bad.

    Do take care, in my case it was dangerous and ended up being of concern to one of my doctors. We had a Australian heatwave (they get very hot!!) and I was laying in the full sun in a jumper trying to get warn on something like a 40 degree celicus day (104F according to the temp conversion). I had no idea at all thou it was a hot day! (a friend found me out there and freaked out). Doctor said I could of easily got bad heat stroke had I been out there any longer.

    Take care. You easily harm yourself laying in a hot bath to get warm.
    ......

    I had that symptom once this year but at the time I think on this occassion I'd gone into like shock (I'd had a very bad fall and it felt like I broke my hip and I'd also fallen onto my ankle and twisted it and it was swelling too at the time. My friend helped me to bed and I felt very cold... we put the electric blanket on but I was still trembling in what felt like I was cold.

    So here's an idea.. maybe the coldness is some kind of body shock when we are very ill???
     
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  4. taniaaust1

    taniaaust1 Senior Member

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    Unfortuantely when I used to get that symptom, nothing like that helped, the heat from surface heat was like it couldnt penetrate into my body.

    I still have times where I cant warm my feet or hands up without putting them into hot water (wrapping up doesnt help, I need an an actal external heat source) but I dont get anything like what I used to get with this where I couldnt warm anything up at all.

    I used to spend a lot of time sitting on a heater trying to get warm and would be left bright pink due to the heat (almost burnt my skin) but would still be cold.

    It must be something going wrong with the the part of our bodies which actually sense temperature. **that's making me wonder what part of our body does that? other then the obvious our brains** I had at least one incident in which I burnt myself with hot water coming out of a tap but I didnt feel it (I also burnt myself on my oven and blistered my skin and didnt feel that either at the time).
    .........

    Min if it is any consulation to you, after at least a few years of that icey cold thing. .. I ended up swinging the other way and instead then had issues with feeling too hot.. eg having too hot feet and having to sleep with the hanging out the bed. Over heating suddenly during the night even on not so warm nights. Interestingly my hands which used to feel very cold to others and probably had felt cold to others all my life, nowdays usually are always warm.

    Now I dont get that hardly much either at all (just some nights when Ive over done I suddenly get too hot and gone back to night sweats due to this). Ive had times when Ive slept in a bath of cold water..and feeling like my body was heating the water.

    Our bodies are so screwed up. Sooner or later that symptom may well shift to another.

    Autonomic system dysfunction symptom?????? That regulates the body, maybe it regulates how we precieve temperature? does anyone know?
     
    Last edited: Dec 16, 2014
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  5. Helen

    Helen Senior Member

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    Did you have thyroid tests? I recognize your symptoms as I had them before I argued to get T3 treatment. T3 solved the problem. Late Dr.John Lowe has written about this. He had the symptoms himself and solved them with T3. Is your body temperature lowered when you feel cold? That could indicate hypothyroidism. Just some thoughts.
    http://www.thyroidscience.com/cases/lowe.9.6.10/lowe.t3.fms.9.6.10.htm
     
  6. worldbackwards

    worldbackwards A unique snowflake

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    This might sound a bit minor, but keeping the curtains closed is something that has helped keep me warm with these symptoms, far more than turning up the heating and putting on layers (although obviously do that as well). It's a long time since I had that bathing in ice water sensation that can't be shifted as bad as that, though I am always cold, but I remember how foul it is, how much every day just feels like going to war with it. Hope it goes off soon for you.
     
    Last edited: Dec 16, 2014
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  7. taniaaust1

    taniaaust1 Senior Member

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    Interesting, thou my curtains were always drawn when I was that sick (I had to board my windows due to light sensitivity).

    Im wondering if you have some theory of how that helped your case?
     
  8. Min

    Min Guest

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    Many thanks for all your kind suggestions, I can only manage showers, not baths, but will certainly take my temperature. The shock theory sounds vety plausible.

    As the only thyroid test I can access is the standard, useless NHS one which always shows me just above the cut off point for treatment , I have been taking Iodoral, I will try increasing the dose.
     
  9. eafw

    eafw Senior Member

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    Yes, which is why it's useful to know if an actual temp drop is there because you'd deal with it slightly differently. If it's only the sensation then it's finding a way to trick the body out of it, if it's actual cold core temp then fuel, rest and blankets are needed
     
    Min likes this.
  10. Raines

    Raines Seize. Eggs. I don't know. Zebra. Eighties.

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    Hi Min,
    I dont get quite the same thing but I have real trouble warming my feet, and I find when the heating blanket and thermal socks and so on arn't working the weight of several blankets on my feet is reassuring. I hope this makes sense.

    taniaaust1 sometimes I can't believe how crazy my symptoms are, I often get freezing feet and then on occasion feel cold from the shoulders up while my mid section is boiling - something to do with digestion is my guess. always fun to try and arrange the duvet when that happens!!

    I never considered this. I always assumed it was a circulation problem. Take the temperature of my feet is now on my list of things to do.
     
  11. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    For me, it's like the chills one gets from having a virus cold. Heating pad doesn't help much, hot drinks help somewhat. Exercise will definitely break through it, but maybe/probably you can't do that.

    I think for me it's part of the HPA (hypothalamus pituitary axis), influenced by histamine H4 receptors in the hypothalamus.
     
  12. Sherlock

    Sherlock tart cherry etc. for joints, insomnia

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    This is something new for me over the past 2 weeks. Sweating, but not not drenching, while dressed in layers for sleep. If I remove some layers and cool down, then I immediately break it and am then in a nice state where I'm not too hot, not too cold for a while. Just right :)

    Exercise the preceding evening might be related, as if the chemical byproducts are the cause of the temperature dysregulation. (I used to think that my problem was low body temp (97.2F), but then discovered that during/after exercise in summer I get way too hot - so now I think of it as being overall temp dysregulation from the HPA.)
     
  13. lansbergen

    lansbergen Senior Member

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    Being icecold even on a hot day was one of my symptoms. It disappeared with overall improvement.

    I can not offer advice other than you already know.
     
  14. worldbackwards

    worldbackwards A unique snowflake

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    I think it's something to do with being extremely sensitive to changes in temperature. In the summer, I always start to feel more cold in a room two or three hours before sundown, as it starts to cool outside, though I have to shut the curtains much earlier in the winter. Also, I can feel when a window isn't closed properly at the other end of the house, even if it's only on the second catch. But it's a lot more complicated than that, far too complicated for me to be getting into here. In the end, keeping warm under these circumstances completely involves playing it by ear, not thinking about logic too much (if something is working, it's not always possible to understand why) and also accepting that sometimes you've reached the end of what you can do.

    The one period when (I think) I was as bad as Min is now was in the blazing summer, when I couldn't feel heat at all, even under piles of quilts, electric blankets, etc. In the end, I put myself under so much heat that began to deteriorate sharply, because it was taking up all my energy. Temperature problems have been the bane of my condition from almost start to finish, because they can be both intractable and actively sapping of energy. I've been improving for these last few years, but I always think that if something stops me getting any better, it will be some sort of final showdown with the cold.

    I write this wearing four layers on my top half, plus three layers of sleeves on top of that, two pairs of trousers plus a pile of blankets two inches thick. When I stop moving my hands, I'll have to put gloves back on them and then wrap them in a jumper. It'll be the same in summer as well, I'll just be sweating underneath it all. And I'm not properly warm now! I yearn the for day when I can cast my fleece to the winds and be free!
     
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  15. akrasia

    akrasia Senior Member

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    The most effective weapon I've found against that sort of internal chill is an infrared heating pad I purchased from S harper image. http://www.sharperimage.com/si/view...ting-Pad/201577?question=Infrared heating pad

    Standard electric blanket, heating pad, or hot water bottle never worked for me, but this was effective and a great relief. The downside is that it is a bit more expensive so if you decide to get something like this, be sure to buy it from somewhere with a liberal return policy.
     
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  16. RYO

    RYO Senior Member

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    Min,

    Sorry to hear that you are having a flare but perhaps there is some comfort in knowing someone across the Atlantic is "back in the hole".

    I experience the same symptoms as you except my ice/cold symptoms are limited to my hip girdle and legs. I have been in bed with electric blankets for last 6 days. It has been difficult to even sit up during these flares. The crushing fatigue has been abating with long naps and I signed on to read your post.

    The fibromyalgia pain is excruciating despite taking tramadol.

    Like others on this forum, I suspect there is an autonomic / neurovascular dysfunction. My suspicion is that during a flare, certain cytokine levels are elevated. The very same ones that the average person experiences when they contract influenza. Unfortunately, for us this cytokine storm can be protracted and never completely returns to a "baseline" state. I loose my appetite and I feel queasy all the time.

    For me each flare brings me back to my initial illness that triggered ME. Early in my illness, I did find a good accupuncturist that temporarily restored "circulation". I am planning to try this again when I am able.

    I am sorry to hear your physicians in the UK are not very helpful.

    I have been trying to keep my internal medicine practice going by working 3 half days per week. I probably benefit more than my patients at times, because my work allows me to mentally escape my own illness.

    My application to the NIH center for Undiagnosed Diseseas was accepted in early November, 2014. Even when I feel like I can't walk, I make it down to my mailbox hoping to find "the letter".

    It is my hope that the NIH can shed some light with their team approach and their significant genetic testing resources. It is also my hope that this experience will help other ME patients.

    I see my own patients suffer with their own trials. I am sure all of us have questioned the purpose of our collective and individual suffering. As I stated in the start of my post, there is a certain fellowship in suffering. You can never know what suffering is until you have experienced it for yourself and it is futile to talk with someone who has not walked in those shoes. It is what made FDR such a special figure in history.

    We are all in the raft drifting as Louis Zamperini told Laura Hillenbrand. I just hope someone screams out one day so we can all get off this miserable ride...
     
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  17. jerrymcfadyen

    jerrymcfadyen Senior Member

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    Sorry I don't have any help other than what's already been shared. I have the exact opposite problem. I burn up all the time even outside in the cold. If I wear a coat in cold weather I just sweat like crazy. I wonder though if the hot and cold symptoms are related. If they are both caused by the same thing.

    @RYO Hello from a fellow North Carolinian.
     
  18. Min

    Min Guest

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    Many thanks all, heat pad looks good, sorry can't write more at mo
     
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  19. rosie26

    rosie26 Senior Member

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    Sorry to hear you are having a bad flare up at the moment @Min. Rest lots. I find when I get the deep chills to the bone when relapsing, the only thing that warms me up again is to have a quick warm shower, and then back to bed to stay warm. It does seem to help for awhile.
     
    Min likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    Ive heard at least one ME specialist say (forget who now) that many of us do get a temperature drop as a warning thing when we are about to crash (and that's something to look out for). Min's temperature probably is dropping too.

    That is an interesting theory.

    Ive also had nights were I was swinging between the hot and cold (I spent so much energy some nights throwing blankets on and off as my body kept switching.. or had the all over and throu me cold but with a hot part (usually my feet feeling like they were in an oven).

    Maybe "the same" temperature problem could go both ways? Thanks, Id never thought of that before. Just like with our dysautomonia.. some have orthostatic hypotension while others get orthostatic hypertension with this (I can get both). It's still all caused by autonomic dysfunction.

    ...........

    I do think that extreme cold all throu me and all over me thing thou is more common manifestation in the severe cases or where one has severely crashed. Min I do think this symptom will settle if you can have some ME improvement eg once you get a better baseline or come out from the crash, I do think its directly related in some way to severity.

    ......

    @Raines " I always assumed it was a circulation problem" .. I personally do think the cold hands and cold feet thing most of us get at some point or another is due to circulation issues.

    Maybe even due to the hypercoagulation issues which most of us with ME have (one study done by a specialised blood lab, found that I think it was about 97% of us had hypercoagulation).. along with the low blood volume issue. So it makes sense a lot of us would get cold hands and feet.
     
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