Chills

I can't add much unfortunately, except that I have the same thing when I feel worse and this is something I've had since the onset.

 

In the first years of illness (do not know exactly how long) I was very cold, even on the hottest summer day I wore socks jogging pants, 2 sweaters to bed with a double duvet. I was also shivering a lot.

Not sure if that’s what you mean?

At that time I asked my dr why. He thought it was a reaction of the immune system.

 

This doesn't answer your question but maybe of use. I've had this for over 50 years since my onset of ME.

The only way I can get warn is in a warm bath, I add more hot as it cools. It mustn't be too hot as I'll then get too hot and have to cool myself down...

I feel so cold that I will cool a warmed bed.

 

Yes, I do get something like that, or possibly several similar things. I don't know how connected they are and have no idea of the cause(s). But chills are definitely a thing. Or things.

1) For 2-3 years I had major problems warming up again if I got cold for any reason, even lying on an electric blanket with an additional electric throw on top. No real shivering, only the more subtle chills. These days a couple of heated wheat bags are enough to feel warm again.

2) If I've overdone things very badly I get very cold for a few hours, borderline hypothermic (34°C/93.2°F) irrespective of ambient temperature, and get chills with that but not actual shivering.

3) Towards the end of a PEM episode I get the chills again. They're almost pleasant. Not sure if that's because they're preferable to burning skin or because I know they signal the end of this lot of PEM.

4) Much of the time, i.e. not just with PEM but every day, I feel slight chills on my arms and legs only, sometimes with burning feet at the same time. Which feels as weird as it sounds.

My afternoon temperature aberrations are the opposite to yours, I get a few hours of feeling hot and feverish despite not having a fever although my facial skin, especially the nose, does get measurably hot. Comes with feeling utterly wiped out and particularly heavy brain fog. Unlike PEM I can't link it to exertion and it only lasts a couple of hours.

Apart from case two above I actually feel a little better when I have the chills. I wonder if it's linked to vasoconstriction leading to more blood going to the brain? Especially since I feel heaps worse when all the blood is going to heating my nose or feet instead.

 

I think I've aways had "not very well" chills going right back into childhood. They usually meant accumulated tiredness (e.g., at the end of a silly busy week), going down with a bug, or premenstrual syndrome. I get them with PEM too, of course, which I assume is the same phenomenon. But there are two additional types of chill that I never had before ME.

The first means I'm in for a big, hours-long surge of pain, and comes with a really strong urge to go to bed whatever the time of day. Once lying down, though, I'll be hit with such horrible all-over muscle pain that there's no point. The only thing to do is take double painkillers (usually tramadol and paracetamol) and hold off lying down for as long as possible. A shower as hot as I can bear it just before bed sometimes damps down the pain enough to enable me to sleep.

The other is the peculiar sensation of the skin between my knees and ankles being extremely cold, when the rest of me is comfortably warm. It feels as if I'm sitting in a heated room with a strong draught of freezing air directed at the level of my calves. No matter how much I wrap up my lower legs, I can't get them warm!

 

I tend to get hot rather than cold when I’m in PEM but I just mention that I’ve had chills as you describe when my ferritin levels are low, just in case that’s a possible factor for you

 

I tend to feel cold unless well-wrapped or in warm sun, in which latter case I warm up too quickly; or in a hot room. When I am still, e.g. indoors, I cool down in a couple of minutes. It's constant putting-on and taking-off of layers, which adds to the knackeredness!

But in the increasingly-hot conditions we are getting in summer, I sometimes have to sleep - or try to sleep - downstairs for the first part of the night, as it's cooler.

 

I get hot when I'm in PEM (after exercise years ago). I've never had chills. But I do have low body temperature (95.6) for 2 days after PEM starts. It's weird.

Menopause is hot and then very chilled, or chilled without ever getting hot.

 

Appears to be pretty common, another one of those things that aren't documented because no one asks. If it's happening and I'm taking a shower it can lead to the weird experience of being both hot and cold at the same thing, which is... interesting. Or alternating between hot and cold, which is annoying.

I had some pretty intense episodes when I first got ill. Saw many reports from LongCovid as well. Had the whole-body trembling as well, several times, but less over the years. It mostly feels like too cold, as in out-too-long-in-very-cold-winter cold. It's too random to figure out any pattern.

 

I also experience chills as part of PEM. I get them despite comfortable room temperature, double winter duvets + extra blankets, woollen socks, wheat warmers, hot tea, etc. Happens even in the middle of heatwaves.

It feels as if the cold icy sensation is coming from deep inside the body.

ETA: Sorry, I forgot to add that I also often get what Hutan describes as "a sort of tingling sensation travelling across the skin" without the cold feeling. To me they feel just like the ones I used to experience before ME when coming down with a bad flu. They feel different to the "burning fizzy water" kind of sensation I often get across the skin, especially on the scalp after sensory overload.

 

Until the last few years my sensation of body temperature always went the other way, with PEM or orthostasis I would be sweaty and uncomfortable. Outside of obvious flu infections and the like I'd not get cold.

That changed with the onset of hypoglycaemic-type events - I started feeling unexpectedly cold after eating carbohydrate rich meals, eventually happening even with small-moderate carb portions. Would occur during sleep as well, i'd wake up freezing and hungry in the early hours and only get warm again after eating. Not diabetes and has thankfully resolved after POTS treatments.

When the spondyloarthritis is flaring or I'm overdue biologics I'll get feelings of temperature disturbance, usually in the evenings and it swings hot/cold rather than just cold.

 

Thank you for that, I'll try and remember it next time I get my bizarrely-cold-lower legs thing. I had heard of hypoglycaemia causing the sensation of cold before, but I've got a goldfish memory. I know my blood sugar control is a bit erratic, though, so it's plausible.

Somehow knowing the reason for weird symptoms makes you feel less as if you're living in an alternative reality that normal people will never experience, even if it doesn't actually do anything to remove the symptom!

 

I get chills a lot, but haven't really paid attention to the timing.

Sometimes I get chills even though my skin feels very hot to touch.

This. Was trying to work out how to describe it!

 

I'd forgotten about that. Super weird sensation. I used to get this in the shower, though in my case including the feet. There I'd be sitting under a stream of lovely warm water and my lower legs would turn visibly white and very very cold. I speculated it was my body doing some extreme vasoconstriction in an attempt to counteract the normal vasodilation brought on by the warmth of the shower. Alternatively some small fibre problem as it was a distinct stocking pattern. All pure guesswork of course. Eventually it stopped happening for no discernible reason.

 

Chills was how my initiating virus started. I was so cold and shivering I had to get into bed with a hot water bottle and go to sleep. Still cold when woke up. No sore throat or cough or snuffles or anything else, just chills. I think I slept more or less all the time for three days. Then appeared to be OK so went back to work (for a variety of other reasons too, mostly being down to my horrible bullying boss).

Following weekend we went off to Birmingham to see Tom Petty and the Heartbreakers (this was when our girls were still quite small), on visiting the Birmingham Botanic Gardens I broke down crying in the Hot House over the fact that our Palm House in Sefton Park (Liverpool) was in danger of being demolished. Normally I'd be upset and cross over that, but not reduced to tears - talk about emotional lability! I did make it into work for one day after that, but it turned out it was my last day.

Nowadays I find that when I overdo things I can't get warm until I get cuddled into bed with my hot water bottle. Sometimes I need two - one to cuddle, and one for my poor cold feet! Keeping my feet nice and warm seems to help to not get chills so often, which is why I have 3 pairs of sheepskin boots at the caravan, and I wear them all summer (wore sandals twice this year) as well as most of the winter.

Winter I wear thick cashmere/wool/nylon mix tights (on the days I have the energy to struggle them on), so some days am able to wear shoes rather than the boots. And wool skirts as close to ankle length as I can find. Corduroy trousers are good too, loose, not skin tight. Oh, and always wear a hat outside in winter... Good excuse for another hat...

Keeping warm and not getting chilled in the first place seems to help a lot for me. OH laughs at me as I keep buying more wool coatigans! My take on this is that getting warmed up again if you've got cold takes a lot of energy. So if you have PEM it'll be more severe if you have got cold and chilly. Dunno if any of this makes any sense!

 

If anyone needs warm clothes to go out in a wheelchair, or gets really, really cold indoors, I can't recommend Buffalo clothing enough. It's expensive, but really warm, light as a feather, dries in no time after washing, and lasts for years. Oh, and it's made in my old home town, which is a bonus.

I wouldn't be able to go out birdwatching in winter if I didn't have good insulation, as it's basically like sitting outdoors on your sofa but with added windchill from zooming along. I wear Buffalo mountain shirts and special forces trousers, and I've bought some secondhand to reduce the price.

Won't be necessary for most, but I thought I'd mention it because it took me quite a while to find the best winter wheelie gear. It was through a chance chat with a police officer, who'd been given the unenviable job of standing for hours outside a building for security, that I heard about the Buffalo trousers. She said they'd saved her many a time, and were the second item on her essential Hanging-About-In-The-Perishing-Cold kit list, after the Shewee.

 

Could you have developed hypothyroidism? Feeling the cold is a really common symptom in the condition.

If you already know you are hypothyroid and are treated for it perhaps you need a dose increase.