Severe temperature control issues

[Nic]

I’m really struggling with this (again). One minute I’m red hot and clammy, next minute I’m freezing cold. I’ve tried everything I can think of (fan, wet flannel, layered clothing and bedding) but nothing is working. The excess pain from both extremes of temperature are bad enough (although cold seems to bring more intense pain), but it’s how ill this is making me feel that’s the real frustration.

I am currently mostly bed bound, can not get comfortable, my sleep is horrendous and to be honest, I’m simply not coping. Does anyone know if there are any treatments which may help cope with temperature control?

 

[Wishful]

Does your measured body temperature change drastically, or is it just your perception of body temperature that is varying? ME seems to mess with perception of neural signals as well as the signals sent out of the brain. You can't easily measure perception, but if your body temperature isn't actually changing, then it's probably a perception problem.

 

[Nic]

Does your measured body temperature change drastically, or is it just your perception of body temperature that is varying? ME seems to mess with perception of neural signals as well as the signals sent out of the brain. You can't easily measure perception, but if your body temperature isn't actually changing, then it's probably a perception problem.

Just perception - core body temp remains around 36.4C. My hands feet are like blocks of ice, so much so others really notice.

 

[Wishful]

I think perception of body temperature is affected by changes: if your body temperature is rising or falling, it's compared to parts of your body that haven't changed temperature yet, so it feels more extreme than it actually is.

Just a wild, non-professional suggestion: try some treatments that raise body temperature, such as thyroid supplements or hot peppers. The body's mechanisms for maintaining a stable temperature might not work stably if your temperature is outside of 'normal', which could lead to small fluctuations that are perceived as wild swings.

Does the magnitude of the fluctuations change if you raise your temperature by thick blankets and hot water bottles or other such external methods?

 

[Nic]

I don’t need to have changed a thing to swing from sweating to shivering- but if when cold I wrap a blanket round me, it usually takes only a minute or two before I am far too hot again. Even warm (not hot) food or liquids cause immediate sweating, so wouldn’t even attempt hot peppers (especially as I’ve never been able to tolerate hot or spicy foods). I am already taking Levothyroxine as I also have an underactive thyroid which was made worse by radiotherapy a few years ago. I have regular blood tests to ensure I’m on the right dosage, so know it’s not my thyroid playing up.

 

[borko2100]

I had the exact same problem recently. I could not manage it either. It was hell. It lasted several weeks then disappeared on it's own suddenly.

The worst part was definately sleeping. I was just too hot and couldn't find a way to get comfortable to sleep. I was also sweating excessively when it was hot and shivering when cold, so it was definately a thermoregulation issue. Something very messed up with the autonomous nervous system.

The only thing that seemed to help a bit was an elimination diet. Also, my improvement coincided with starting to go outside more often. This symptom started after being inside for a long time. Which makes me suspect that I might have some kind of allergy (eg mold) to my house.

 

[Wishful]

but if when cold I wrap a blanket round me, it usually takes only a minute or two before I am far too hot again.

Yes, but that's a short-term reaction, probably too short to actually raise your internal temperature to the 36.7C or so that is the temperature most human bodies evolved to. If you got your body temperature up around 36.7C, maybe it would fluctuate less. Like I said, that's really just a wild guess, but it's probably an experiment I'd try if I was having that problem. I don't suppose you measured your body temperature before the fluctuations became a problem? I suppose it's possible that 36.4 is your normal point and has been all your life, although the thermoregulation system might still work best at the higher level.

I tend to think of things from an engineering perspective, and I do know that some systems operate unreliably outside certain design specifications. A temperature-controlled system might function at the edges of its designed range, but stability might be worse.

If changing your body temperature doesn't help, I'm not sure what else to try. If conventional medicine doesn't offer any help, you could try TCM or other alternative systems. Even if their theoretical basis is nonsense, they might have found an answer to this problem by accident.

 

[Wishful]

Also, my improvement coincided with starting to go outside more often. This symptom started after being inside for a long time.

There are a lot more factors that change by going outside more often. I wouldn't jump to allergies as a prime candidate. If it reoccurs, you could try living somewhere else for a period of time. If it was something in your house, living in a hotel room for a day or two should make the symptoms go away, and returning to your house would make them start up again.

 

[Booble]

I don't want to state the obvious but.....menopause or peri-menopause?

 

[Nic]

Booble, that's initially what I was putting this down to, especially since I underwent chemotherapy in 2015-16 which induced early menopause. However, the extreme of temperature swings I am experiencing seem to always correspond with M.E. flare ups. While poor temperature regulation has been an issue since the onset of M.E., it used to be more transient and manageable than it has since earlier this year. I just wish there was some treatment for my wonky thermostat.

 

[gbells]

I’m really struggling with this (again). One minute I’m red hot and clammy, next minute I’m freezing cold. I’ve tried everything I can think of (fan, wet flannel, layered clothing and bedding) but nothing is working. The excess pain from both extremes of temperature are bad enough (although cold seems to bring more intense pain), but it’s how ill this is making me feel that’s the real frustration.

I am currently mostly bed bound, can not get comfortable, my sleep is horrendous and to be honest, I’m simply not coping. Does anyone know if there are any treatments which may help cope with temperature control?

With Raynaud's disease or Cold interance you just raise body temperature by wearing more layers when you are cold or turn the heat up.

 

[Nic]

I live my life in layers lol. I think it would be altogether easier to deal with if I was either constantly cold or constantly hot, it's the wild swinging between both extremes which is proving difficult. One of the odd things is that regardless of whether I'm roasting hot or freezing cold, my feet are always like blocks of ice. Wouldn't you think that in all of the decades people have been suffering from M.E. there would be some more answers? I think my GP was onto something in a recent discussion. She commented that it's not an area many doctors want to specialise in, and in her mind, she thinks that's due in part to there being so little research or understanding, and also due to the frustration of it not being an illness that is easily treated. While it's not helpful to us as patients, I do understand how frustrating it must be for doctors not to have answers and finding themselves unable to offer treatments or solutions to all of the various symptoms we pose. I am all too aware that, certainly with my GP, she wants so desperately to be able to offer something, and over the years has been willing to try.

 

[Booble]

I've always had freezing cold feet too.

Oddly I've found that staying very well hydrated has helped minimize or eradicate the hot/cold feeling.

 

[Wishful]

However, the extreme of temperature swings I am experiencing seem to always correspond with M.E. flare ups.

You're not alone in that. In the early stages of my ME, when I was having ME flare-ups several times a day, my body (at least oral) temperature would abruptly rise at least few tenths, and occasionally up to a full degree C. I usually felt feverish at those times. Sometimes I'd feel feverish but find that my oral temperature was below normal, which is what makes me think that our perceptions involve temperature differentials.

I think we normally perceive only reasonable significant body temperature changes. Since ME seems to mess up neural functions, it seems plausible that the perception neurons are overreacting.

You could search online to see if there are any TCM, ayurvedic, or other remedies listed for exaggerated hot/cold sensations. Surely other people throughout history have suffered that symptom before, and maybe someone noticed that a certain herb, or tea or whatever helped. Those other medical systems may have been better at noticing accidental treatments and recording them. Conventional medicine is too focused on theories, as well as on finding applications for patented drugs, and on profitable markets. Funding for diseases probably correlates strongly with potential market size.

Another suggestions: experiment with preventive treatments. Instead of trying to treat the feelings after they've occurred, try things before you expect to get a flare-up. If you expect to get chilled while fetching the mail, try soaking your feet in hot water first, or taking a small amount of hot spice. If you expect to overheat while cooking, maybe a cold pack on your head before starting would help. I admit that the chances of discovering something useful are low, it's better than no chance at all. The few things I've discovered in my 19 years of ME have certainly improved my quality of life, so I've very glad to have found them.

While it's not helpful to us as patients, I do understand how frustrating it must be for doctors not to have answers and finding themselves unable to offer treatments or solutions to all of the various symptoms we pose.

That's the feeling I've gotten from several doctors too. Unfortunately, some turn that into anger at the patient.

 

[kangaSue]

Can be just another issue of autonomic dysfunction (sudomotor dysfunction) which can easily be taken for menopause symptoms. Not uncommon to have these temperature dysregulation issues when you have Small Fiber Neuropathy (or Autonomic Neuropathy).

 

[pattismith]

Just perception - core body temp remains around 36.4C. My hands feet are like blocks of ice, so much so others really notice.

Nic,
it looks like a skin sensory/autonomic disorder, with autonomic skin vascular dysregulation.
Do you have tingling sensation when your feet/hands are burning?
Raynaud and Erythromelalgia are two known skin vascular disorders (with autonomic involvement) that are triggered by cold (Raynaud) or heat (erythromelalgia), and they can sometimes exist together.
Too much thyroid hormones, or too little sex hormones can affect the tolerance to heat, so you need to check these two points.
I had both hyperthyroid/thyroiditis + menopause + small fiber neuropathy/erythromelalgia one year ago, and I have similar problems to you.
My thyroid issue is under control, and I take female hormones, but still burn (supine in my layers) or freeze under various circumstances...