How do you cope with the cold and extreme sleepiness

[Cyclo5]

Hi everyone,

The last 4-6 weeks very cold weather in North Wales / North of England (temps of 4c down to -2c), have been a challenge. My PMR is in remission and "replaced" or is it "supplemented" with adrenal insufficiency. I take 25-35 mg of Hyrdrocortisone daily, also a tiny dose (30mcg) of levothyroxine for underactive thyroid.

When I get cold after a dog walk or even just in the house, I become super-sleepy and dose off for anything between 30 and 60 mins. When I waken I take 5-10mg of hydrocortisone and begin to 'waken up'.

What causes me to react to the cold with this incredible sleepiness? Anybody else experienced this symptom?

Best Wishes - Conrad

[SheffieldJane]

This does sound like Adrenal recovery. I can remember getting terribly cold last year, I am in Australia this year and am much too hot not sure what is worse. When I was cold I had a body length fluffy covered hot water bottle and a plug in heat up blanket. It did work. As did hot drinks. My house is not cold. It was weird but I could get cozy and I kind of thought it was normal. Mention it to a doctor if you want to. After a lot of years I have become pretty laid back. I find the forum best for the nitty gritties of coping with this disease and it’s after effects. As for sleepiness, I take a nap most days (90 minute) this buys me an evening.

[Cyclo5 in reply to SheffieldJane]

I love that nap point ...and the electric blanket, felt better just thinking about them 😊😊

[Gimme]

I am still on 6 mg pred. Fairly straightforward for me, if I am sleepy, I take a nap (since I am retired).

I often get cold and shivery in the evening too. I've always assumed that it is part of the PMR, as I had it before I went on pred too, but I guess it is the adrenal suppression now. I just turn the electric blanket on to warm up.

[PMRpro Ambassador]

It is a severe stress on the body and the body is unable to produce the usual shot of cortisol that is the normal response to falling body temperature. Sleepiness is one of the early responses to hypothermia - did you check your body temperature when you got in? Do you know what your normal body temperature is? I know mine is often 35.6C so it wouldn't take much to get down to the critical 35C. And hmmm - I wonder if that is anything to do with the autoimmune disorder????

medlineplus.gov/hypothermia...

pmc.ncbi.nlm.nih.gov/articl...

ncbi.nlm.nih.gov/books/NBK2....

You wouldn't necessarily notice the effect in the house as hypothermia creeps up slowly - the clumsiness might be put down to cold hands for example but eventually you get to sleepiness. While moving enough with adequate outdoor clothing you wouldn't notice either - but it takes pretty impressive outdoor clothing to withstand those temperatures in the UK because of the windchill factor. I went out yesterday dressed as I always dress for temps of minus whatever here - and that normally means I am comfortable even without gloves on, in fact, gloves and a scarf is too much. But yesterday there was a brisk wind from the SE and it was perishing!!!! Very British I was thinking!

As already suggested - heated clothing and blankets would help. There is now a wide range of battery powered outdoor clothing. I assume you wear windproof gear - but do you wear a hat and gloves? And multiple layers under the windproof layer? I don't often see walkers in the UK wearing the sort of stuff we wear for skiing on a windy day ...

[Cyclo5 in reply to PMRpro]

I invested in a new thermometer for taking my temperature today as I suspect that I was becoming hypothermic last week. I'm pretty good at layering, even in the house with the heating thermostat on at 23c, I wear a merino wool baselayer, shirt and zip-up merino jumper. Then for outside, it's a down jacket, hat and gloves with silver thread which is supposed to reflect back what little heat remains in my hands.

I'm going to check out the electric/heated clothing .... or just move to Marseille from December to March.

[PMRpro Ambassador in reply to Cyclo5]

It can be a bit parky in January and early February!!! Even Rome can get a bit chilly!

[PMRnewbie2017]

I see you also have an under active thyroid.. In addition to the explanations given by PMRpro concerning the role of cortisol, there is also the hypothalamus and pituitary to consider too. When we get too cold and our core temperature falls below 37deg, our homeostatic systems kick in to conserve heat and raise body core temperature. We will shiver, our blood vessels contact but in addition to doing that the hypothalamus releases TRH (thyroid releasing hormone). This stimulates the anterior pituitary to release TSH (thyroid stimulating hormone) which promotes release of Thyroxine which in turn increases our metabolic rate and promotes heat production. So you can see that because the HPA axis is not functioning optimally, unfortunately your body's ability to react to stresses (cold being one of them) is impaired for additional reasons. My OH has a heating gilet which runs off a power pack and he wears it under his jacket when it's very cold. I don't let him go out without his hat, scarf and gloves. I think the trick is to to stay warm by being dressed appropriately and don't get cold. I agree that we Brits just don't dress for the weather. I'm never cold when I ski (even at minus14deg), but I do get cold when I walk the dog! Hmmm?. Since I've been on Pred +7rs, I have noticed that I feel the cold more than I used to and my thermostat is definitely broken. You can get used ski clothing from EBay and Vinted at crazily cheap prices and because it's "technical clothing" it's very warm, waterproof and wind proof but not bulky.