body temperature problem

[Birdst1-3]

Mine is a general question nothing to do with fibromyalgia can someone point me to a different community. My problem doesn't seem to have a topic name

Thank you

[Hazel_Angelstar Administrator FMA UK Staff]

Perhaps if you explain your question more, someone can help. What is the problem you are having with body temperature?

[Birdst1-3 in reply to Hazel_Angelstar]

Thank you very much for your reply. From morning to going bed at night I am very hot. From my feet to face. also l feel wet everywhere. While standing I feel that water is running down my legs. I do not sweat. A couple of times a day I feel really cold and shivery.At night I feel as is i am in a damp bed but this isn't so. My actual temperature is fine. hope this is enough fir someone to relate to. thanks again

[SnazzyD]

I don’t think you’ll find a community that deals with it on its own because it can be a symptom of so many conditions. Do you have a condition that it is linked to?

[Birdst1-3 in reply to SnazzyD]

Thank you. i did fracture my hip two years ago and someone did say that a nerve could have been damaged but my problems didn't start until 9 months after. I don't have any other conditions. I am 85 but I don't think it can be an age problem. Thanks again

[Makie-Uppie]

Search for 'What to Do If I Have Problems with Body Temperature Regulation?'

[Birdst1-3 in reply to Makie-Uppie]

Thank you very much. I have just searched as you suggested but I'm afraid of no help

[Jaykaydylanmack]

Hello there,I'm. Not too sure if this will help you or not, I can't direct you to the proper community as you say for body temperature but I csn tell you that I suffer from hot temperatures all the time and have done for 2 years now, which was in line with when fibromyalgia starting working on my body, mine was a slow process so it was one where the gp of hospital jumped to the conclusion it was fibromyalgia, we had to rule out everything else then I was diagnosed with fibromyalgia and also peripheral neuropathy which is damage to the small fibre nerves in my fingers, hands, feet.

I've felt hotel since basically 2 years now, I am never cold even when my husband and 2 sons tell me it is cold or nippy so I'm left with its an effect of the Conditions i have, it's not an easy thing to live with and I don't know what stage you are at but me for example : I can walk from our lounge to the kitchen and I have 2 walking aids so nice and slow and when I get to the kitchen I'm sweating on my forehead, in the morning if I walk upstairs after getting our son to school again I'm having to wipe my forehead, my full back and front also are damp with perspiration and depending on what colour I wear I would go and change as it will seep right through my clothes, the back of my neck is soaking wet. The only part of my upper body that doesn't end up damp is actually under my arms where you would be most likely to sweat. It's a game changer for me as the accompanied with the fatigue means I am so slow to do anything at all. I'm only 42 years of age and in 2 years I've gone from working full time and loving my job to most days of the week being bed bound due to the fatigue and except taking my son to school in the car I don't really go out the house as its far far too much for me now, as for work, well that's the sad but, I had a job I actually loved and my heart was with and now I cant go through a single day without being in pain and sleeping most of the day away.

Im not sure if this helps or not but the body temp is a huge part of what's happ2in my life and I can be that your autonomic nerves may have been damaged.

Hope your better soon.

[Sweetchild1988 in reply to Jaykaydylanmack]

Thankyou so much for sharing this the symptoms you have described are exactly those I am suffering with… it is so awful you cannot go anywhere without pouring with sweat it is not only uncomfortable but embarrassing too, I never feel nice my hair is a mess , have to constantly change my clothes… it’s just one more thing to deal with along with the fibromyalgia and I have osteoarthritis in both knees both hips and now my shoulders , the pain just gets me down but I have to live with it there isn’t any choice … I walk moderately every day to keep my bones active but pay for it afterwards, some days I feel like I’m an old woman (60) the new (40) apparently… but that’s unfortunetely the cards I’ve been dealt!!! I hope you can get to live your life a little better some day as you are very young… but sounds like you have a lovely family so that’s good at least, Thankyou once again for sharing your story sometimes it helps to know your not alone in your suffering and your certainly not all the best to you

[Bababunchies in reply to Jaykaydylanmack]

Hi Jaykaydylanmack, I’m sorry to hear of your problems & must say you sound very similar to me. I am always drenched in sweat. I have various health problems, starting with severe pelvic pain from a car accident 25+yrs ago. Within a couple of years I was constantly exhausted & diagnosed with CFS. Now ME/CFS although I know some believe they are different. My pelvic pain got worse each year & I'm now bed bound almost all the time despite 24/7 opiate pain relief plus others. Approx 9 yrs ago I started what became 3yrs of bad UTIs & that’s when the severe sweating started & it all eventually led to a bad case of sepsis. I have been on HRT (for pelvic pain) approx 13yrs (? Guess) also quarterly hormone injections to stop periods as 3wks out of every 4 of my cycle, it was making my pelvic pain much worse. Tweaking HRT helped minimise hot flushes & feeling warm all the time. However since the UTIs started & a Fibro diagnosis not long after, I’m totally unable to regulate my temperature. I am in bed with thin cover & a huge fan on 24/7 & I can still be drenched in sweat. I remember standing outside for 30 mins one night talking to someone. They were shaking with cold, very frosty, they had thick jacket, hat, gloves etc. I had thin summer knee length pyjamas on with thin strappy vest top. It was below 0 & I was still dripping in sweat. Running down my body, dripping off my face & I felt I was boiling up. It’s crazy! At that point I had no UTI! Even when I was in hospital very unwell with sepsis, I barely had an actual temperature but I was permanently drenched in sweat. My bedroom is even now showing signs of damp as I have no heating on & a fan blasting & I'm breathing out hot air. The very strong hospital antibiotic for sepsis finally stopped my temperature problems. 3 months later, they were back & been like this ever since. I totally sympathise & despite all my health issues, it’s the sweating that’s been the thing that has taken my confidence away. I no longer go out, I’m so embarrassed by it. I’m ok with very close family or friends who understand coming to me, but I have completely stopped socialising out with that. The only time I feel comfortable is if I’m on holiday & it’s so warm that everyone else is sweating, I finally feel normal again if that makes sense. The rest of the time I feel everyone staring at me while I’m walking around with a t-shirt on in winter, constantly wiping myself with flannels. With breathing hot air into my mask, they are soaked within a few minutes & I'm forever pulling them up to wipe the sweat away! Im so sorry to everyone else suffering with this as I know how really horrible it is, it affects us much more than just a physical issue. I hate that I can only wear my hair up so I can pull it all away from my face but I used to live my hair down & styling it. There’s no point now, it’s soaked within minutes. I pay to get my hair coloured & the colour often can’t take properly as I’m sweating so much. Apologies for my huge message but I wanted you to know I really do sympathise. I’m coming 50 this year & have been unwell now for over half my life. That was a very difficult thing to accept especially as I’ve really had to give up any hope of getting better. That does help though as I no longer am being constantly let down by knock backs. I accept there is no cure & anything which helps, no matter how small, is a bonus. Sending love & gentle hugs to anyone suffering, no matter the circumstances 🌻

[BlueTofu]

HelloMy hot flushes from menopause were just finally going (down to one every day or so), when I start with fibromyalgia symptoms last year. I found that they then started up again. I also feel very cold at times (21 degrees in my flat and I'm wearing a thick cardigan).

But I don't know if it's side effects of Nortriptyline which I'm on for the pain.

[Woodhouse16]

I cant regulate my body temperature since starting with fibromyalgia symptoms which happened after getting over mild pneumonia. My pain is worse for me in the heat and if i sweat i shiver and get goose pimples too!.. my hands and feet are mostly cold to the touch too..

[Captaincat]

I go from sweating to chills, need a hotwater bottle cold hands and feet. wake up with sweaty hands and feet. Can’t get temp properly regulated.

[Birdst1-3 in reply to Captaincat]

I cant believe that someone in the health services cannot know anything about our problems for eighteen months I am very hot most of the day feeling cold and shivery several times a day. My legs feet and face are burning.I also feel wet all over I do not actually sweat I've had blood tests, seen a gynecologist, endocrinologist and a neurologist.It would be nice if I could find someone else with this problem. No one I speak to have ever heard about this problem.Thanks for listening.

[PenelopeClearwater]

Hi there. I have had issues with sweating and overheating for years and years - it can be really embarrassing, aside from the discomfort. After my recent diagnosis of fibromyalgia, I’ve been reading all health articles and research papers I can het my hands on and this one explains that excessive sweating can be a symptom of fibro: everydayhealth.com/fibromya...

Because fibro affects the nervous system, it seems to interfere with just about every function 😩

I had a hysterectomy three years ago, when I was 33 and have been in early menopause since, so I started taking sage supplements for the hot flushes - it may well be useful for your issue 🤷 I found that the sage supplements from Holland and Barrett are the best ones - a bit pricey, but better than any others I tried.

I also treated myself to a set of wool bedding - it’s apparently recommended for hot sweats at night, as it’s natural and breathable - giving warmth in winter and coolness in summer. It’s certainly helped me 😁

thewoolroom.com

I hope that helps and that you start to get some relief. 💙

[Birdst1-3 in reply to PenelopeClearwater]

Thank you for your suggestions I will take note and act. Hopefully find something that helps.One thing which is different from anyone else is that I don't actually sweat but I am boiling hot most of the day. thanks again

[JayCeon]

Hi Birdst1-3 - I like looking for and hopefully finding answers to medical enigmas. My life-long oversensitivities have just been revealed as something they call "MCAS", which has become apparent due to severe reactions to my jabs. And more curiosities...

The closest things that I'd've thought of in your case of being wet without sweating, being boiling hot and sometimes shivering cold several times a day is thyroid, which you've already got checked and dysautonomia.

'Researching' your symptoms, not being able to sweat can result in overheating, that'd be one connection. healthline.com/health/sweat....

Or does this description ring any bells?: pubmed.ncbi.nlm.nih.gov/306...

Dysautonomia would need quite a few further curiosities.

I'm not sure at the moment how exactly you distinguish being wet from sweating - where would the wetness then be coming from, if not from your sweat glands?

One comparison FWIW: My 'healthy' wife is often boiling hot, which is great as I've turned into a bit of a chillblain since fibro: Holding hands etc. is good for both, she can cool down, I can warm up. When she gets cold it's often from not eating, and she heats up due to eating. Does that ring a bell? She also hardly sweats, but never gets wet tho - that's where the comparison ends.,,, I've often wondered if she shouldn't get it checked, but like many she prefers carting or pushing me to the docs than herself...

[Birdst1-3 in reply to JayCeon]

Thank you JayCoen for responding. You have certainly understood how I am feeling. I have noted all you say and will follow up.