Phantom low body temperature and dehydration

[PEF]

Dear friends please read on. Sorry its long but I have a couple of questions for you near the end.

My daughter has had ME for a long time and we have tried many things. We are now trying to dissect the symptoms into their smallest components and are working on them. One of them is this. She often feels cold but if you touch her hand or take her temperature she is not cold. Her internal temperature measuring and signalling system is clearly no good. As a result she often sleeps in many layers of clothes and puts on an electric heated blanket.

She often wakes up with a headache. We are now trying to test the hypothesis that the headaches are a result of dehydration during the night as a result of actually overheating event though she does not feel warm, let alone hot. These headaches then trigger a migraine.

So if we can help her feel warm without the many layers, causing over heating and hence dehydrating we may be able to prevent the headaches and the resultant migraines.

The reason for writing here is (a) to ask if anyone has had anything or thought of anything similar and (b) to ask if anyone knows how we might help my daughter to feel warm throughout the night without wearing multiple layers and using the electric blanket. We will try to introduce drinking more water but of course has the downside of causing multiple trips to the toilet and disturbing sleep.

Does anyone know of anything that we can put into water to hydrate her / keep her hydrated and drink less water? Thank you for reading this far. I hope to hear from you.

 

[roller]

microfiber bedding, all the inlets, cover and sheets etc.
its brilliant.

i used to have two on the bed: one for 'winter' and a regular one.
you can combine/switch depending on chill state

 

[ScottTriGuy]

I felt cold all the time until I started on a low dose of synthroid (I'm currently taking .0375 mcg) - I am tolerating this winter far better than last winter...I didn't realize how much being cold could be so painful, I don't miss the pain.

My lab tests for thyroid always come back in the 'normal' range. But (from what I understand), those tests are for serum levels, not for cellular levels. I let my doctor think she was prescribing it for depression (that I don't have).

Pre-synthroid my morning temperature was 96.1, since I've started it is now 96.6 (I have been on higher doses of synthroid but my temperature did not rise accordingly). N = 1.

 

[Snowdrop]

Hi @PEF

Welcome to the PR forums

I don't have experience with being cold but I'm sure someone will pipe in before too long.
If you are going to increase her fluids perhaps you might consider using an electrolyte solution for some of the fluid intake.
This might help her be better hydrated and ease any migraine from that.

 

[eafw]

You might have to experiment a bit as it can be quite personal as to what will work, and you haven't given many details as to the severity of your daughter, but you could start with the following:

1) throughout the evening sip on water then have some rehydration mix, stop about an hour before sleep. Look for recipes online, it's basically very dilute salt and glucose, or you can buy sachets ready to use. 2) first thing in the morning have a good drink of mineral water, as much as is comfortable. If possible wait a while before getting out of bed for the bathroom or whatever.

For the cold, how mobile is she and underweight at all ? Again this is personal, but try soft warm bed socks. If she is out of bed or sitting up wear a hoody and padded vest (easier to stay warm than warm up from cold). Does she warm up with food ? Maybe soup would be nice as an evening snack.

Another consideration for blankets when sleeping is sensory issues, some people "feel" warmer with weight on them even though the insulation is nominally the same as a lighter quilt. Darkness can have an effect too. Gentle muscle massage or stretches if she can manage this might help with circulation and sense of warmth as do relaxation exercises.

Have you tried taking layers off her once she is asleep or would that make her wake feeling cold ? Does her temp vary through the day and how does her sense of coldness vary ? Assume you've had all the basic bloods checked.

 

[ukxmrv]

Does she need to go to the loo a lot over night?
Are there times of the day she feels warmer?

 

[MeSci]

Hi @PEF

Welcome to the PR forums

I don't have experience with being cold but I'm sure someone will pipe in before too long.
If you are going to increase her fluids perhaps you might consider using an electrolyte solution for some of the fluid intake.
This might help her be better hydrated and ease any migraine from that.

I agree with this. It appears common in ME to have electrolyte deficiency, so drinking too much plain water can be dangerous, as it further dilutes the body fluids. Can you have blood electrolyte tests done? These are quite a standard type of test that a doctor should be able to do.

 

[Mel9]

I agree with this. It appears common in ME to have electrolyte deficiency, so drinking too much plain water can be dangerous, as it further dilutes the body fluids. Can you have blood electrolyte tests done? These are quite a standard type of test that a doctor should be able to do.

I need electrolytes(gastrolite) three times a day. I did have very low body temperature but, As I am now recovering from the Lyme disease component of my ME CFS (after one year of taking antibiotics) my body temperature is nearly normal now. When I was at my worst, i felt as though I was freezing, even in warm weather

 

[2kidswithME]

My son felt v cold for the first three years he was unwell, he wore the same fleece for most of that time! Along with jogging trousers (track suit bottoms) and high necked shirts and a woolly hat. In summer we had to do sweat checks on him and make him take off an underneath layer if he was sweating. As we live in England the weather was on the cool side, so it was rare he actually got sweaty.

Previous to the full blown ME, he had chronic and severe headaches for about 18 months, and we did track his fluid intake for some weeks to see if that would help, but it made no difference to the headaches when he had more fluids. (He was during that time poorly intermittently, looking back I realise this was the first stage of the ME, but we were so focussed on the headaches that we missed the boom & bust pattern.) At his doctor's suggestion we tried acupuncture for the headaches which mercifully brought immediate relief, but it didn't cure the underlying problem which was the ME; that hit him six months later after a viral illness.

So he had both symptoms but not together!

The suggestion about electrolytes is interesting, if she is really dehydrated then full strength ORS actually tastes good. Otherwise she might be mildly dehydrated, in which case you can dilute rehydration solution to make it more palatable. but also remember that most any sugar/salt combination works the same way, e.g, crisps & a sweet drink will work, or add a bit extra salt to food. Coconut water is perfect for electrolyte balance, now available as a boxed drink in northern climates. (Experience based on living many years in hot climates.)

Also for the headaches you might look at blood sugar issues, is your daughter eating regularly and sensibly to keep levels stable? Look at GI index for foods if needed. (Didn't help my son, but still worth considering.)

God luck finding some combination that works.

 

[ryan31337]

Also for the headaches you might look at blood sugar issues, is your daughter eating regularly and sensibly to keep levels stable?

I'd second that. When I rarely skip meals I'll usually be rewarded with a migraine in the day. Mostly my migraines hit me upon waking, at 6-7am, so I find that if I have another meal immediately before bed (regardless of whether I'm hungry!) I can minimise the frequency/severity of these migraines. This meal also helps me maintain sleep, without it I often wake up cold and hungry in the early hours and struggle to sleep again until I eat.

Waking up thirsty with dry lips, dark pee etc. is also normal for me even though I drink 3-4 litres of water a day right up until late. I need to try electrolyte solutions, as others have recommended.

Have you tried any other supplements/prescriptions for the migraine? As someone that lost a couple of years to very severe, very frequent migraine at age 11 the only way I made any general ME progress was to get them under control first with adult doses of migraine prophylaxis.

 

[taniaaust1]

I agree with what the others here have said, she probably is dehydrating some during the night (something which is quite common with ME/CFS esp if she has something like POTS as one of her symptoms which can often be missed).

She may need to be taking electrolyte solutions.

The feeling cold is one of my symptoms I used to get (from my observations of many its more common in the early years of this illness). Over doing it can make this symptom worst and it can be a sign of someone constantly overdoing.

I tried for a while sleeping with an electric blanket on all night but that was very bad and made my insomnia worst.. so I don't at all recommend that. (ME/CFS people can have electromagnetic frequency sensitivity)

Rugging up or wearing multiple layers of clothing probably wont hurt her if attention is being paid to keep her fluids up (and possibly be on electrolytes) but do take care..... I got so cold feeling at one point that multiple layers of clothes didn't feel enough for me and I was left unable to feel a heat wave where temperatures were over 40 degree celsius (it may of been 110F that day) . Someone found me laying outside in full sun that day and wearing leggings and jumper trying to get warm still. Doctor said I could of died if that person hadn't found me outside.

"Does anyone know of anything that we can put into water to hydrate her / keep her hydrated and drink less water? "

Whatever you do, do not cut her fluids back. She may need more then a healthy person. Use electrolytes and she may find she needs less... or may in fact drink even more but feel better for it.

My tests at the hospital showed my kidneys starting to get damage though dehydration. I have had to be ambulanced to hospital multiple times for a drip (they usually have to give me 2L of IV fluids when that happens). Many of us with ME/CFS have low blood volume so need to drink more. I was dehydrated and hence starting to show kidney damage though I'd drank 3 Litres that day. Get her to keep her fluids up..

 

[PEF]

Thank you to everyone who offer their thoughts, ideas and comments. I really y appreciate it very much. There are some useful things for us to consider and to do.
Do hesitate to ask if I can help you in any way. Paul

 

[Rlman]

I'm 29, sleep with 7 sweaters, longjohns, socks, 7 duvets on top including 3 wool and 2 wool under. Crazy!!!! also have dry mouth, frequent unrination. thyroid labs seem normal. at night oral temp is 35.8 with the layers. but feel absolutely freezing without them! Still haven't figured out the cause of all this.