Severe Chills

[Bunnehbunn]

I tried looking for an answer to this on the search but couldn't find anything I didn't try or pertained to me. I've gone to several doctors and all I got was neglect, rudeness, and disbelief of symptoms. I was able to live with severe fatigue, brain fog, and muscular/bone pain but now I've gotten severe chills. The only thing that would help in the past would be methylfolate, methylb12, and copper(I think a mix of zinc and folate/b12 brought about the deficiency). Now I'm stuck with chills that I can't figure out, that just are getting worse and don't respond to anything; wearing several coats and being under several blankets does nothing, hot shower help sometimes but only while in it. Does anyone know what could cause such chills and what I could try? They feel 100x worse than alcohol withdrawal or opiate withdrawal, I could even handle those chills but this is just so severe.

 

[Wishful]

What's the temperature like where you are? It was -20C here this morning, and yes, I felt chilled after being outside for an hour or so. Are you feeling the chills even in a room at standard room temperature? What's your body temperature (oral or whatever) while you're feeling deeply chilled?

If your body temperature is normal, then it could be a problem with however our bodies register temperature. Otherwise, it might be metabolic, with your cells somehow not generating enough ATP, or not using it properly.

Does vigorous exercise make you feel warmer, or does it make the chills worse? That's assuming you can do exercise.

Another thing to experiment with: extra carbs or extra fats. A fat-heavy meal makes me feel much warmer some time later.

 

[CFS_for_19_years]

The only patient I've ever seen with severe chills had malaria. This doesn't mean that's what you have. Is there any chance you were exposed to malaria?

 

[Rebeccare]

I have terrible chills as well. And once I'm chilled it's impossible to warm up without an outside heat source--it's as though my body just can't produce its own heat easily. So I got an outside heat source: this electric blanket has been my lifesaver over the past several years. Sometimes when I'm cold I can go under this blanket and turn it up to the maximum setting, and it actually takes a while for me to even feel like the blanket's warm against my body because I'm so chilled.

I have also found that my feet tend to get cold faster than the rest of my body, and they get more cold than the rest of my body. So if I put effort into making and keeping my feet warm (such as wearing warm socks, putting toe warmers in my shoes when I go outside, and resting my feet on a microwaveable hot pack), it makes a huge difference. So try to pay attention to your body and see if there's any particular part, your toes, your ears, your hands, your core, your lower back, that seems to crave heat more and make sure it gets the heat it needs!

 

[Shoshana]

once I'm chilled it's impossible to warm up without an outside heat source

I find this, also!

resting my feet on a microwaveable hot pack

I do this, often, as well!

 

[joanierav]

that could be a symptom of hypothyroid. have you had your thyroid checked? its an easy fix. joanie

 

[Haley]

For me, chills are my 'stop what you are doing right now and rest or pay severely' warning. I also seem to go the opposite way - overheat when I reach my limits (in summer). Seems to have something to do with my body's lack of ability to regulate internal temperature, but other than that I'm clueless (thyroid has been checked and is fine)...

Hopefully someone can shed some more light

 

[Judee]

I also think chills are part of a shock response when our body is going into crisis like maybe hypoglycemia, adrenal, low electrolytes, drastic change in bp, etc. I find it helps to start checking vitals when this happens.

We have a pulse oximeter that has a plethysmograph that shows odd heart beat patterns of the heart. Using one was the first time we found out my mom had PVCs which were confirmed by our PCP when he had her do a Holter for 24 hours.

Also checking vitals will sometimes show that your bp is dropping or even too high. My mom gets chills when hers is too high so having a bp cuff is good too.

Don't forget to take your temperature as well.

Some of these might give you an idea of what is going on but always follow up with your doctor or go to ER if you feel like it is getting out of hand especially as chills can sometimes be related to heart attack.

 

[Bunnehbunn]

@Wishful it's 0C here but before I came down ill I would be able to go out without a coat in that temperature. My oral temp is fine, exercise and high fat doesn't help; I did notice lentils sometimes temporarily helped that's how I got the copper idea.
@CFS_for_19_years no way possible
@joanierav because my chills were the worse they've ever been yesterday I made an appointment with a doc, he tested my t3, t4, tsh. Tsh was fine in the past but never had the t3 and t4 checked (other doctors refused).
@RebeccaRe I love the idea but if a hot shower doesn't really help not sure if an electric blanket would, I've tried a blanket out of the drier and that wouldn't help either.
@Judee I went to the ER about 2 months ago sick as a dog with many debilitating symptoms and a fever, they sent me home and it took a week for it to get better. Doctors keep refusing to check my adrenals but I know I have severe adrenal fatigue, my blood pressure is low on average but not super low. I think I experience hypoglycemia but I've never tested it with a glucose monitor since I ran out of strips, I was getting blood sugar that would jump from 120 to 80 at one time. The chills have been constant though and all vitals have been steady.

 

[Wishful]

Tsh just isn't sufficient to check for all the possible thyroid malfunctions. Others here are much more knowledgeable about what thyroid tests need to be done, so maybe one of them will have some suggestions. If your other thyroid hormone levels are somewhat abnormal and the doctor says that it's not important because your Tsh is normal, find a better doctor. I had an endocrinologist admit that my free T3 & T4 readings were abnormal, but he refused to consider any alternative to 'simple hypothyroidism'. Some doctors are more concerned with their own convenience than the health of their patients.

 

[Bunnehbunn]

I've learned that oh too well. Whatever is wrong with me could have been caught early before getting this bad if doctors didn't neglect me because the diagnosis was to hard for them.

 

[Bunnehbunn]

Well I got some lab results back from a couple days ago and my comprehensive thyroid panel is in normal levels. I also have no anemia and intact my labs have been the best they've been in years, my eGFR on kidneys is the highest it's been in 10 years (I've been diagnosed with CKD stage 3 but the labs now shows it's stage 2) and since I've been ill my WBC and neutrophils are in normal range instead of being high.
Still I'm getting severe fatigue, pain, and chills; I have no clue what could cause these severe chills

 

[jesse's mom]

My body does not do well in the winter, I am oversensitive to both heat and cold. I have noticed that then I have chills and no fever my heart rate is high every time. I was low in vitamin D and it took me months to titrate up to 2,000 iu of D3. My bp and hr are stable now, and I have had chills one time last week. I not have helped you, but I do wish you all the best!

 

[Raven Mom]

dear @Bunnehbunn ~ at times I have chills which are more severe by far than any cold I experienced pre-ME/CFS (and I was raised in thunder bay where winters were -10 or -20 in the days before windchill factors were put into the equation. I'd have shivers and teeth-chattering until I sat by the fire and drank a hot liquid but within 10 mins, it would slowly recede and right as summer-warm rain again within 20 mins for sure).

in these years of depletion and symptoms gone awry, I have no ability to tolerate cold whatever and if on a fairly low ebb, cannot even 'weather' { } the coming-on of the shift to a cool summer evening if the day has been hot. but the alarming,irrepressible, shuddering under many-blanketed chills, those hit for hours and there's no turning them around or hiding them-- they stop the day and, as they're on of the obvious symptoms--even alarm others (teeth chattering under blankets when there's a warm breeze through the window is unmistakably occurring...).

my instinct is that @Judee is correct in thinking "I also think chills are part of a shock response when our body is going into crisis like maybe hypoglycemia, adrenal, low electrolytes, drastic change in bp, etc."--- that they're a real warning sign to be gentler to the system in many/every way you can muster/dream up.

my experience also resonates with @RebeccaRe and @Shoshana , who find preventing getting cold in the real world/on the outside is a massive help. for me, it's not so much the feet (though I wear thick wool socks all the time in the winter and double them if feeling the warning signs of a crash hovering in my orbit)....but my head. even though I have very thick, long hair, I really can't go out in winter without a hat and if the actual weather is brisk, then a hat under a down hood. but for prevention, when feeling even a low ebb (pre-actual warning symptoms), I wear a toque indoors summer or winter and this seems to reduce the likelihood that the ebb will progress to a crash. maybe it reduces strain on the system?

best of luck to you~*~*

 

[Wishful]

I was raised in thunder bay where winters were -10 or -20 in the days before windchill factors were put into the equation.

You must have been there in a warm spell. I seem to recall plenty of -40 (before windchill) days when I was there.

 

[Raven Mom]

You must have been there in a warm spell. I seem to recall plenty of -40 (before windchill) days when I was there.

well, down-playing seemed more appropriate than alarmism in this context here in southern ontario, there's a panic whenever we get to -10 with windchill....speaking about the north tends to sound like a trek to the wilds of tibet to most southerners, just entirely unrelatable. BTW, in this thread about temperatures~ I do wish there were the cheap finnish saunas where I'm living now. I wonder if they'd help a damaged system to repair since I find a long sleep with too many blankets for an 'ordinary' person to justify can turn round a looming downturn sometimes. whatever sweating does seems to recalibrate the system sometimes...(the only saunas here are far at the edges of town in athletic facilities filled with chlorinated air from their pools...a town nearby has an infrared one in a yoga studio that is very pricey but considering it at a point that I'm able to invest in a new tack).

 

[Bunnehbunn]

Sorry, fatigue and symptoms have been terrible lately. I'm attempting all of my best supplements so far with no improvement. I've been doing fasting, intermittent fasting, and keto(started about a week ago).

Helps a bit with mood and energy but my chills went away for a few weeks but are back worse than ever. Starting to get used to feeling freezing(eventhough now worse than before) but one of my most annoying symptoms are back. Insomnia with frequent urination at night(only starts happening when I try to sleep).

I'm going to try methyl folate, methyl B12, and active b6 since that's helped in the past some times. Also going to get digestive enzymes because I haven't been digesting a single thing I eat(all comes out whole in poop, been having to do enemas occasionally since I've been having no bowel movement.

I went to a functional medicine doctor and still need to get the blood work done but kinda upset and almost don't want to because the greeting nurse practitioner was literally the worst medical professional I've ever been too, she believed me less than all normal doctor's I've been to and she was SOOOO rude.

Vitamin D was my answer once but wasn't again. I used to think it was hypoglycemia but getting blood sugar up or being in ketosis does nothing for chills. It's also not even cold insensitivity, chills and freezing even if I'm in a warm place, drink warm drinks, scolding shower.

 

[prioris]

I remember around 40 years ago with the disease, I would get extreme chills in northeast for many weeks even during heat waves. I would wear winters clothes.

 

[Bunnehbunn]

Well after a lot of experimenting I figured out what caused and fixed the chills. I can't be 100% certain of this without labs but all the foods that helped my chills are rich in this one mineral... Selenium.

My diet is actually very low in it as I don't eat grains and usual only meat is grass fed eggs which is low in selenium. Definitely explains why when I start eating wheat from laziness the chills go away and when I'm on the cusp of chills (where it comes and goes during the days) cigarettes in the past made them come as I was smoking since selenium is also an anti oxidant.

 

[Wishful]

I like stories of eventually finding the one nutrient that makes a difference. It takes time and effort, but it can make such a difference in quality of life. A neighbour had developed a really dangerous temper, and all it took was a selenium supplement to restore his mental balance.