Chills and feeling cold

Are you talking about rigors @Hutan ?

Sometimes I get cold quite easily and need a hot bath to warm up and wear lots of fleece and keep my house at 27°C. After the swine flu epidemic, if I got cold e.g. by going out in my garden this used to trigger head colds but that got better over about 7 years and it was during that time I found out that 27°C was the critical temperature for me to avoid these recurring headcolds.

But I also get rigors when a bad patch is coming on, which is kind of next level chills, where I am not all that physically cold but I feel as though I have zero body heat and shiver uncontrollably and my muscles are in spasm and I have to curl up and get super warm ASAP. If it happens when I am walking I am doubled over and barely able to walk in a kind of crouch. It is such a sense of absolute cold that it feels like it must be a neurological pathology of some kind.

Recently I had a bad patch last week and experienced rigors as well as 'emotional lability' off the chart, which was the search term which lead me to this thread. I woke up in the middle of the night with rigors, under blankets, in my small well insulated bedroom with a big radiator and thermostat set for 27°C. So it was not the outside temperature, it was my hypothalamus going bonkers causing the rigors.

I think they are linked, rigors and emotional lability, because they both involve the midbrain and as we have been discussing in other threads there is evidence that blood flow is lower in the midbrain for PWME.

https://www.s4me.info/threads/limbi...igue-syndrome-me-cfs-2021-xia-li-et-al.23110/
 
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boolybooly said:
Are you talking about rigors @Hutan ?
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But I also get rigors when a bad patch is coming on, which is kind of next level chills, where I am not all that physically cold but I feel as though I have zero body heat and shiver uncontrollably and my muscles are in spasm and I have to curl up and get super warm ASAP.
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I don't think I've experienced it as pronounced as that, just the feeling of being very cold, shivers that move across my body that probably can't even be seen, and an urgent need to lie down. Reading about possible causes, maybe it's caused by a rapid drop in blood pressure? I get something similar when vomiting.
 
I think we definitely need to know more about temperate issues in ME.

I suspect both my temperature regulation and temperature sensation/awareness are off. I used to be able to cope with extremes of temperature, I have even been swimming amongst sea ice in Antarctica, but now either extreme of temperature can trigger PEM. Also I now need thermometers at times to identify how hot or cold my home is.

I don’t normally get cold hands or feet, but now do get chills and over heating in my core, particularly the thorax: hot flushes and sweating bouts, primarily while sleeping, are associated both with PEM and adverse reactions to foodstuffs I am intolerant of.

When I get cold now it can take hours to warm up. Episodes of feeling very cold, not explainable by external temperature, ie chills, tend to occur in the morning after unrefreshing sleep to need rest to recover from having been asleep. It is not uncommon when I wake up feeling more tired than when I went to sleep. In such circumstances I will get up briefly to anything necessary, eg to bring the milk in or feed the cat when she was still alive, but then need to rest in bed for several hours before establishing what activity might be possible that day. After this brief activity I will feel very cold, and need several hours, two or three, wrapped well in bed in a warm room, before I feel right again.
 
I have had chills as part of my PEM, I see it as an autonomic problem regulating body temperature. I have no central heating and at one stage of my illness, in relapse, one night, I felt I was getting to a stage of hypothermia, room temp was likely to be about 10. I had full body chills and a sense of panic and strong adrenal drive to move. I had no psychological trigger for it. It resolved when I got a hottie and put the heater on and warmed up. Took ages and ruined my sleep for night. I resolved never to have this again. Since then I heat my bedroom which is also now my day room with my recliner. Change of seasons is hard as temps fluctuate wildly in my home due to climate but especially as the temp changes in the afternoon. I still get the sense of this every day, I usually wear a beanie and have one close, even in bed. I have a hottie at hand too, I need one to sleep and nap during day. Probably my peripheral circulation is abit munted from smoking in my earlier years so may contribute to problems regulating vasodilation and constriction.
 
I have had ME for over 30 years.Recently I have been having chills.Not just normal chills.Shaking all over when I get cold.Nothing stops them except getting under 2 blankets,bundle up and it will go away after a while.Got checked out to see if I had a infection,maybe sinuses.Blood work came by perfect.No sign of infection.Also know fever.Does anyone have this symptom.Your input would be appreciated.
 
Have you managed to identify anything triggering this?

I have not had such violent shaking but I do get cold much more easily and find it harder to warm up for the rest of the day after I have had a shower. Even if I manage to warm up nicely for a while, and stay wrapped up in bed, I get cold again and shivery again several times for the rest of the day.
 
Hi @curtnchrist

I was going to start a thread on this exact new symptom! I've had ME/CFS for 35 years and this shivery chilly feeling started a month ago and I've been baffled by it myself. At first I thought it was age/ menopause related, but now I'm not so sure. I am still experiencing severe night sweats for 10 yrs but it includes uncomfortable chills that won't go away. I've added another blanket over my duvet. I have my heater turned up and still feeling chilled which is very unusual for me since I don't like heat.

I'm also wearing a thick pile fleece pullover under my parka which is wild because this would have caused me to overheat in the past.

I think it might be related to low thyroid so I'm experimenting with Dashi broth which includes Kombu a good source of iodine.
 
Trish said:
Have you managed to identify anything triggering this?

I have not had such violent shaking but I do get cold much more easily and find it harder to warm up for the rest of the day after I have had a shower. Even if I manage to warm up nicely for a while, and stay wrapped up in bed, I get cold again and shivery again several times for the rest of the day.
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That’s funny, a warm shower is what I do to heat up when I am stuck in cold mode, if I can muster the energy, it makes me more tired in a different way and might be to do with the heart rate/BPchanges that the standing and the heat seem to cause.
 
Mij said:
Hi @curtnchrist

I was going to start a thread on this exact new symptom! I've had ME/CFS for 35 years and this shivery chilly feeling started a month ago and I've been baffled by it myself. At first I thought it was age/ menopause related, but now I'm not so sure. I am still experiencing severe night sweats for 10 yrs but it includes uncomfortable chills that won't go away. I've added another blanket over my duvet. I have my heater turned up and still feeling chilled which is very unusual for me since I don't like heat.

I'm also wearing a thick pile fleece pullover under my parka which is wild because this would have caused me to overheat in the past.

I think it might be related to low thyroid so I'm experimenting with Dashi broth which includes Kombu a good source of iodine.
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Thanks, I had thyroid checked.It is fine.This is very strange for me.I like colder weather because high heat has always bothered me
 
Trish said:
Have you managed to identify anything triggering this?

I have not had such violent shaking but I do get cold much more easily and find it harder to warm up for the rest of the day after I have had a shower. Even if I manage to warm up nicely for a while, and stay wrapped up in bed, I get cold again and shivery again several times for the rest of the day.
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No can’t seem to find a reason.Except I battle sinusitis this time of year
 
Hutan said:
For the last few days, I've been ending up in bed in the afternoons, unable to get warm, exhausted and feeling chills. I guess it's PEM, although it seems to just last a few hours and doesn't involve the body crushed pain that is my experience of full-on PEM. Chills are a frequent feature of my experience of PEM, but I searched the forum and I don't think anyone has mentioned them.

I think of them as different to not being able to get warm, although perhaps they go together. And they aren't as big as a shiver. They are a sort of tingling sensation travelling across the skin. Googling, it is suggested that the muscles are contracting and relaxing, and that is what it feels like. And it's suggested that the body does this in order to get warm.

The thing is, the thermostat in my house says it's 21 degrees celsius, I'm in bed, fully clothed, covered with a feather duvet and a blanket, and holding a cup of hot tea. My son says the house is warm.

Healthline says


Another source says:


An explanation for why people with rheumatoid arthritis and lupus get chills is


That's all a bit vague. I'm interested in whether you all also experience chills as part of your PEM. And what exactly the mechanism is for them. Maybe it will give us a clue as to what is happening in PEM.
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I find it hard to think on because at work I used to have a heater (icy cold feet and bottom of leg) and thank goodness now electric throws and heat pads have been invented means they are most places I might be and I can do the solution - which is lots of direct heat (not just blankets) very quickly these days.

But that I have these and have always been a fan of fires and on odd occasions had to sit on or stand over radiators says it’s common

And yet even when I have for me been bigger most around me are so rude and innately taught to gaslight and bigot they just would say it was because I was slim (even tho it didn’t work like that - tho granted the cold would take ages to recover from too) or Barth little terms like ‘sensitive’ even when I was the one doing the more physical travelling tasks than them (people never check their slights are true in reality before ssserting them based on tropes). So I learned to stop talking of thinking of it.

But yeah I’m chilled a lot both in throughout the day just be immediate ‘from having done that task’ combined with ‘cumulated exhaustion and PEM’ from previous days.

The interesting one is post shower when it’s been a hot shower and I need to lie down after and waiting for the point to hit where I go from roasting from shower to needing to turn on electric throw otherwise I’ll be chilled almost like a flick over switch and the two are separated things (one exhaustion rising and the other residual heatedness dropping)
 
My new cold shivery chills symptoms are not PEM related as the forum subtitle implies btw. I feel overheated and dehydrated during delayed PEM but haven't experienced PEM in years by carefully pacing.

To add, I took my temperature for one month every day over 20yrs ago for my integrative/functional MD, my body temperature dropped to 95,5 for 2 days post delayed PEM which isn't normal after exercise. I wasn't feeling cold shivery during that time period though.
 
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This would explain delayed PEM for me:

"A low body temperature with feeling hot often points to your brain's thermostat(hypothalamus) being confused, possibly due to injury, illness (like sepsis), or hormonal shifts(like menopause), causing misdirected signals for sweating(feeling hot) while core temperature is low, a potentially serious sign of dysregulation".
 
Mij said:
"A low body temperature with feeling hot often points to your brain's thermostat(hypothalamus) being confused, possibly due to injury, illness (like sepsis), or hormonal shifts(like menopause
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I seem to be from a line of women who never got their thermostats back after menopause. My gran had hot flushes (followed of course by chills that were just as uncomfortable) for the rest of her life. They got much less frequent than in the first few years after menopause, but they were still going.

I'm 22 years out and still all over the place, so I'm not hopeful for my prospects. :emoji_sweat_smile:
 
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