Fibromyalgia Action UK
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I have been following a post about lack of temperature control in the body

Here is what is going with me... I freeze during the daytime and have to bundle up. At night I burn up so bad , I sleep with icepacks, a fan blowing on me and my air conditioner set at 65 degrees Fahrenheit. And have to wake up to change the icepacks. I even have socks with icepacks in them

I'm 60 years old. This has been going on for years now. No Dr. Can me an answer.

Anyone else going through this???

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I do get hot and cold but not to the extreme of ice packs I hope you get some answers xx

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Thank You for your reply

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Hi! I'm a sweater today I'm dripping!!!! It starts at my head down my face behind my ears it's soooo embarrassing. At night I sleep with a fan on me. I'll be like this till winter than I get the chills. I think alot of us with fibro have faulty thermostats😨,. Chris

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I can totally relate.. I'm the same age and am burning hot most of the time except for about 2 hours between 5 and 7 pm when I can't get warm. I carry fans around with me and spare batteries for them. 2fans in the bedroom and one in every room. I'm actually dreading the summer. I haven't even worn a winter coat this time only a thin raincoat even though we've had a long bad winter. This is definitely not menopause although I do get hot flushes and there is a difference. Oh to be normal!! X

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wonky thermostat too and not the menopause - haven't really got the answer except I always have cool shower before bed and wear natural fibres. Cold water bottles help but haven't had to resort to ice packs. I overheat very easily too. I've just really had to accept it as one of those weird fibro things.

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I wear natural fibers, have diffuser with calming, sleeping oils , sleep naked. Ceiling fan. And have socks from Nautra Cure (sp) with icepacks in the bottom of them. The weird thing is I freeze during the day. I have to a my thick robe on and under a blanket ok??? It's already in high 70's Fahrenheit here . I keep blackout curtains on bedrooms and window film on patio doors to save on my electric bill as I am on fixed income. But come night time if it isn't like a freezer I don't sleep. I don't sleep well at all due to the burning up and switching out icepacks.

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But I run fevers daily mainly in the morning.I also have lichen sclerosis of vulva and inner lips of it that is out of remission. My insurance will NOT pay for laser surgery for it because it is not guarantee to work and it requires yearly maintenance. The surgery is costly. The traditional treatments I did try but the side effects were worse than disease.

Not to mention that medications are highly toxic.

So my female area of my body is going through it's own private tribulations.

I have IBS-D also. Now that is great fun when it is flared LOL. Yes along with RA and Some other wonderful cookies. Funny how Fibromyalgia can lead you to so many other ailments and disorders.

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Regarding the Lichen sclerosus, it is possible that a steroid cream - used very sparingly - may help or even cure the problem. Things like using a barrier cream will stop burning after peeing. Not using soap/bubble bath/shower gel but rather plain water or an emollient may help.

I understand that you've tried traditional treatments though it looks to me as though you're in the US, there may be just one little difference here. You never know.

Good luck :-)

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Tried steroid creams . They just didn't help. I do not take baths at all and use an anti fungal - anti bacterial body wash. I use a natural emu oil with anti inflammatory herbs and anti fungal oils added to apply the area, it is the only thing that offers relief.

Thank You very much for your reply

It is greatly appreciated

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I am similar but not to the same degree as yourself, I have no real answer to it unfortunately. I did find that when the heat got too much I had an inspiration and went in a sauna and steam room, I cranked the heat and moisture up and went in for about two minutes then five then ten and ended up at fifteen minutes. I found I was able to feel cool and enjoyed the rest of the day ! In addition my pain levels subsided and I lost a pound or two ! When I feel cold in the morning, usually after a sweaty night, I have tried everything but nothing but time seems to work, indeed if i have a hot drink I sweat like mad but my feet and head still feel cold ! I have had to wear a wooly hat and all my outside clothes even in a room at 21*. I feel for you but cannot help you, if I think of something I will return to this discussion, good luck !

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Not as extreme as you have sorry. I get cold a lot not hot. I have layers and layers on me. Never am I hot, bundles of blankets, comforters, robes, socks, heating pads, when really cold in house I wear hats in med winter and gloves in house. Only when below 0! I can not tolerate blowing cold air it cuts like a knife through my skin. I love Sun, heat, warmth! Have had fibro for 22 years now. Colder the older I get. 🤖🌞

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Has your Dr checked your thyroid function levels? I have Fibro, going through menapause, & had thyroid problems (had my thyroid removed), so suffered similarBUT never to the extreme as yours! You must go back to Dr, and be firm!

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Yes He did and it was fine

He said it was it vascular disorder

But didn't what kind!!!!!!!

I ask him again.

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I don’t have extremes, but am most always hot, and with the slightest increase in temperature or anxiety, I start profusely sweating. This seemed to get worse when I had an increase to my depression meds. Wondered if perhaps there’s a medication you take in the evening that can be triggering yours.

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Yes, Cols122. It does seem to be very much part of Fibromyalgia and M.E. in my case, that we have no temperature control. I just cannot believe how it is, after a late evening shower, that I suffer so, with burning all over, and then later, turns to chill. I used to wonder if it was part of the change in women, but no I do not now think so, as well past that. Cannot tolerate either any weight of covers either on my bed. Certainly cannot tolerate any electric blankets either! So sorry you are also suffering with this. Love Roselil

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Yes i to have the same problem doctors have blamed the tablets I am taking but reading the side effects of them all there is no mention of sweating. They have given me a blood pressure drug which helps to stop sweating. This has supported me well at times. It's a very uncomfortable symptoms to live with. Your GP. can support you more by listening to what your body is telling you. They left me for years before we got any results.

Go back to the GP and request tests to see what could be creating symptoms..

Write down the symptoms and when they are most active. Take your temperature every hour because mine would drop and then show normal.

Eat a good diet to rid you of antitoxins . Blackberties. Blueberry. Strawberrys. Drink water throughout the day. Take warm lemon drinks to clean your system down. Change to decaf in coffee and tea. Look at the food you eat most and see if there are any patterns of your symptoms. Keep pushing you doctor to help you and share with him it's affecting your life. Good luck. Big hug.

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I already eat an anti inflammatory diet lifestyle which is very clean eating. So my pain level is extremely low. Days I don't even have any. My flare ups aren't as painful and they don't last as long. I write everything down . I flushed my of medications. And I do fasting. I use ginger, turmeric, lemon for a flush. I also dried Turmeric root powder with black pepper for pain.

And make a batch of Golden Milk when I flare. I have studied and used herbs for over 30 yrs. And been vegetarian most my life.

Thank You for your reply

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Well you are certainly doing the right things. I would push your doctor for more tests. Good luck.

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Yes, anything from simply overheating when trying to sleep at night to drenching night sweats! (Whole top half of bed bedding wet through) Has been happening ever since getting severe flu-like virus about 1969, 1970. (Was similar to Diptheria) I am now 68 and it happened again only last night. Had to get up quietly and change everything. During daytime doesn't happen, but if daytime temperature goes above 18C, then I need to have cold drinks or fan or air conditioning or something. My body temperature actually rises. In winter, once I get cold need to be near a source of heat to get warm again, otherwise just get painfully stiff with cold, somewhat disorientated, and find it hard to talk. Makes me think that with other symptoms maybe I have had a mild dose of ME way back then, but have only been diagnosed with CFS since late 1990's.

Don't know if above info helps at all, but I do know that I was originally x-rayed to see if I had a pulmonary disease, (sometimes flu develops into pneumonia, even in teenagers) Since then, no-one interested.... Guess I'm at that age now everything can be blamed on my age. (If you are female, then guess what, .... is all about your hormones...!?!)

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Hi sympathise with you as I have same problem with sweating mainly my head pours down my face and drips onto hands soooooo embarrassing even through winter had to wear short sleeved top and very light coat when going into shops sweating would start would use two or three gents handkerchiefs soaked through cant get out of shops quick enough only sleep with cotton sheet at night even through the winter cant bear weight of clothes on bed and sit with fan on every day no matter the weather comforting to know I'm not alone with this problem you have my sympathy take care x

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Thank You dear one , xoxo

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I had a similar problem but not as extreme. I was greatly helped by a lady care magnet, about £35 in Boots, & it worked Wonders! You wear it in your underwear & I used it for several years when well past menopause. Don’t often have to use it now but kepp it with me just in case.

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Really???

Lady Care Magnet???

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I suffer in the same way. I find two paracetamol just before I go to bed take away the worst of it sometimes, but at other times they make no difference and I wake up in the middle of the night drenched..

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Same, no temperature control. I get hot and cold with the weather, just doing housework and sometimes parts of me spontaneously heat up when they feel like it.

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I also have a busted thermostat but I’m always hot not cold. Like you mine is worse at night my feet feel like they are on fire and it creeps up my legs. I have no heating on in my bedroom in the winter and have my windows open but I still get it. I also have very warm hands and my head over heats very quickly if I’m doing stuff like cleaning. I’m 42 so not menapause I’m not looking forward to summer either as I live in eastbourne on the south coast and we have a micro climate and sometimes we get hotter weather than some parts of the medeterain we even grow tropical plants. Plus our winter hasn’t been that bad we didn’t get any of the snow most people got. Good luck with your illness I hope it gets better for you.

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Thank You

I went through menopause with no problems at all.

Had a hysterectomy no problems at all

No need for hormones

My Dr. Told it was some type vascular disorder... Duh

But didn't elaborate

So I have researched anything I find and keep hitting brick walls

I hope yours get better too

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No can't say I do I do get cold at times but at night I have to sleep with my ceiling fan. Hot one minute cold the next..ugh

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I am suffering the same. Vascular calcification .narrow arteries + blocked system.

Meds given. All sorts but I think that Statin given clears mine????

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I have been getting hot and cold flushes for the last 25 years! Had various treatment but nothing helped. I started having hot flushes that went on for 15 to 20 mins, then a short break and off again! Also I am boiling at times and taking things off and then freezing cold for a while and putting them back on again! Looked it up and it says that our temperature can't regulate itself because of a faulty hypothamus! Told the latest Doctor and he agreed (they usually give an uninterested look when I suggest anything is because of Fibromyalgia and don't seem to know anything about the condition. Have to go back later as I'm having Heart tests at the moment so we can discuss it. Not sure of what will be suggested though? Hope this helps.

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Yep I am the same and all I have been told is to keep having blood tests to see if I have infection

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