Freezing cold and shivery - supplements?

[SevereME]

I'm continually cold all over, and nearly always have blankets or a hot water bottle - except during a rare heat wave.

I definitely won't be short of anything nutritionally. No thyroid issues etc. (Blood tests not an option). My skin feels cool. Body temperature is typically lower than the normal range. I suspect it may be metabolism related.

This has been going on years and is different to the occasional intense patches of cold on extremities (that's neurological for sure and happens despite my skin feeling warm).

Is there anything I can take in order to either be warmer, or feel warmer (like alcohol makes you feel a bit warmer even though it doesn't warm you up)?

Kelp and iodine haven't helped.

 

[Wishful]

What is your normal body temperature? Many sites claim that 37.0C is normal, but others say that 36.6C is normal, and it does vary quite a bit between individuals. I've measured my oral temperature as low as 36.0C (without drinking cold fluids or breathing through my mouth) and not felt abnormally cold.

I'm inclined to suspect faulty interpretation of temperature signals in your brain. There are all sorts of neurological disorders based on faulty interpretation of signals: people smelling colours or tasting heat or whatever. Misinterpreting temperature signals seems quite possible. I'm not sure what specialist to see to check for that, maybe a neurologist?

If other people are sitting in the same hot room and sweating from the heat, are you not sweating while covered in blankets and hugging a hot water bottle? In that situation, would your oral temperature be significantly lower than someone else? That's the kind of experiment that would show whether it's an issue of heat generation or temperature misinterpretation.

Do hot spices have an effect on how warm you feel?

 

[Mary]

No thyroid issues etc

Why are you so sure you don't have thyroid issues? They're very common with ME/CFS. I have hypothyroidism, though I don't have Hashimoto's. Last summer an endo wanted me to try to taper off my medication (Naturethroid, desiccated thyroid). I cut it by 1/4 or so and within a few days started getting cold and feeling awful. I was unable to cut my dose. Though just recently I have been able to cut my medication in half, much to my surprise, after starting to take Cellfood. My body temperature has stayed in the normal range and I feel better than before with the Cellfood.

 

[xebex]

It sounds like a type of dysautonomia, which can be caused by food sensitivities as well as many other things, spinal issues being another major one.

Why do you say that you aren't short of anything nutritionally? I mean, i don't disagree with you that you might have a great diet or a good nutritional program, but most people with ME can't detox properly and many have issues converting nutrients, using enzymes, digesting or utilizing proteins, and generally responding negatively to pretty much everything etc, this makes food a major suspect, not necessarily as a cause but as one of many triggers and exacerbators for all the stuff we have to deal with.

 

[kangaSue]

Do you have a normal sweat pattern?

Apparently, we are very poor judges of our sweat response and when I started feeling cold all the time, I didn't realise that I had stopped sweating (but was having hot flush-like sweats anytime, and night sweats). Sweat tests in an autonomic function test panel (QSART, TST) were abnormal (reduced sweat response) and diagnosed as being part of having Autonomic Neuropathy.

 

[Judee]

One of the previous members PR has a couple websites relating to remission as well as symptom improvement. He posted a blog here on vitamin D but that led to some additional info on one of his sites regard boron. http://lassesen.com/cfids/supplements/boron.htm

He said, "A recent post ( ) has called my attention to this mineral because it caused a rise of body temperature in CFS patients. Nutrients causing temporary or permanent normalization of the below average temperature seen in CFS/ME/GWS implies that there is a deficiency that is being corrected. In this case, it appears to moderate Vitamin D deficiencies and may be a significant adjunct for Vitamin D supplementation."

I do find when I am supplementing my D3 & K2, if I add a low dose boron capsule to the mix, that I feel warm enough to throw back blankets that night when normally I use an electric blanket set on the highest setting as well as two comforters and two fleece blankets year round.

Anyway, it's just a one page read but he does talk about safe limits to avoid toxicity.

I'm not sure about the recent post he references as that ? link gives a "problem loading page" error. Also your situation sounds particular so this may not work for you but I thought I should mention it. Others seem to have good suggestions as well.

 

[SevereME]

I don't have symptoms thyroid problems, but fairly sure I have dysautomnia, possibly POTS, although it is a bit better than it was.

I'm never short of anything nutritionally on the tests, I'm not having digestive symptoms that would indicate issues absorbing things, I have someone else able to cook a balanced diet, and extra supplements too including iron, vitamin D, B vitamins and minerals, although there is not much that is nutritional related to the endocrine system.

 

[xebex]

I don't have symptoms thyroid problems, but fairly sure I have dysautomnia, possibly POTS, although it is a bit better than it was.

I'm never short of anything nutritionally on the tests, I'm not having digestive symptoms that would indicate issues absorbing things, I have someone else able to cook a balanced diet, and extra supplements too including iron, vitamin D, B vitamins and minerals, although there is not much that is nutritional related to the endocrine system.

ok makes sense, you could have food sensitivities, they don't necessarily affect your gut in an obvious way. I am sensitive to gluten, and my sister is officially celiac neither of us have obvious gut issues, but we both get all over body aches, migraines and mood issues when accidentally ingesting gluten. I'm not saying you have a gluten issue just an example to show that foods don't necessarily affect the gut in an obvious way.

Ultimately i think your shivering would be dysautonomia, and you'd need to try some of the things that people with POTs do to help like increase salt and electrolytes, wear compressions stockings, etc Some people have found help removing food sensitivities.

I have episodes of shivering, but its not constant, just happens randomly. I've found that breathwork can help (trying to get yourself into a more parasympathetic state - square breathing for example) as well as wearing thermal underwear, and/or a weighted blanket may also help.

 

[SevereME]

I'm going to try the boron and see how it goes. I've never got anywhere with elimination diets, except that red food coloring and chocolate make any migraines worse. Gluten avoidance and many other trials haven't helped. I'm already vegan so don't eat many foods and that includes a lot of what's processed.

I have already been following POTS info, wear thick ribbed socks because so cold. I checked into dysautomnia but not many suggestions on the coldness except the obvious blankets and warm drinks and hypothermia treatments.

Weighted blankets are far too heavy for me. I already struggle moving at times with regular. I have been thinking of an electric blanket or pad, or infrared lamp or infrared heating pad since they are supposed to penetrate further with the heat. Even when my skin is really warm I often stay cold for some time.

My upper arms especially so looking at PICC line covers since apparently upper arm warmers don't exist. It's a surprisingly cold summer where I am. I think I've had 2 days without the blankets.