Is it fibro or something else? - Fibromyalgia Acti...

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Is it fibro or something else?


Hi does anyone else have a problem with temp control? I have really bad sweating (dripping off my face too!) even when I havent done anything! Its been like this for so long its getting me down !

28 Replies

I have this all the time, I find taking Agnus Castus helps reduce the frequency of them.

JD57 in reply to Scottish-piglet

I am nearly 60 and through the menopause I would say, so thats why im thinking its something else. thanks for your comment though. :)

Join the Club!

Unfortunately extremes of body temperature are commonly experienced by we fibromites.

There is not a lot we can do to eliminate this but we can make ourselves a bit more comfortable.

I carry a hand fan, (fold up, not battery) it takes up little room in a bag and is quiet to use. I also have a gel pad I can put next to the skin when I feel hot.

However, if it is a new symptom I suggest you talk to your GP.

I am sure others will have ideas to help too.


JD57 in reply to bluebell99

I do have a fan which i use all night off and on -it drives my husband mad!! I also use cool pads and mini fan if i go out (which isnt often due to extreme fatigue). :( I used to think it was menopause but i am nearly 60 so it cant be that can it? Thanks for the advice tho I appreciate hearing what everyone thinks.

I usually find that being too cold is my problem, but occasionally in very hot weather, or a hot bath I have sweating fit's come on randomly. I have gynae issues too so never sure whether to blame the fibro or not! Perhaps mention it to your GP just to ensure nothing is missed, especially if it's new for you.

JD57 in reply to tmc182

Thank you for your advice. I also have a prolapse which hasnt been sorted yet and I am almost 60 so think menopause is behind me by now? Just wish it would stop!!!( I get very very cold about 30 seconds before the sweating which seems weird and then intense heat) !

uggycat in reply to JD57

Yes I have big problem with hot temperature control, mentioned it to consultant last week. perhaps we could have thermastats installed in our bodies xx

Yep!! I think we all need new thermostats....never seems to be just right. I use a battery operated hand fan and find that helps...hope you get it sorted soon....


I don't wish to burst your bubble about the menopause been behind

you but I am 60 and this is my first full year with out a period !! Also I am now going through hot flushes which I never had before the menopause. So yes it could still be hormonal fluctuations. It could also be due to medicatons you may be taking. There are numorous reasons why you may be sweating so excessively.

While fibro causes my temp to fluctuate I have to be honest I have never heard fibro cause such excessive sweat. I'm not saying it doesn't happen only I have never heard about it before.

Do you have a thirst with the sweating? If you do need to drink alot it could even be worth talking to your doctor he/she may suggest a sugar test. There are just so many other things that it could be that may need looking at.

Sometimes I think we all blame every thing on Fibromyalgia rather too quickly. I talk from experience after suffering a brain hemmorage I thought it was a fibro headache !!


Hi there

I don't know whether you take any meds or not? If so, it could possibly be a side effect of those?

Lots of us do have "thermostat" problems. With me I feel the cold more than the heat during the day then suffer with the heat at night and sweat terribly.

I think it is just another symptom to add to the lovely effects of Fibro!

I buy something called Deep Freeze gel, sprays and patches to help with my pain. They maybe something that you could look into? Boots the Chemists sell them.

Wishing you much peace

Lu xx

No I'm only getting sweating at night that wakes me up I'm feed up with this but in daytime I'm always cold even in house like my room stat on body is wrong

Hello JD57..I have fibro and also Hypermobility EDS,and not too sure which some of my symptoms are attributed to ..

I have awful night sweats that sometime bring on a sequence of symptoms that render me incapacitated with illness for days.Owing to this mix of additional symptoms-and some others- that as yet cannot be placed anywhere,I am due to see a vasculitis specialist.

when you have a Fibromyalgia diagnosis it can sometimes be used as an excuse for everything that is wrong, so if you have a feeling it isn't your fibro, see your GP to discuss it and get referred to a specialist.

Best wishes and better health x

vena1 in reply to Tillyray

hi Tillyray you said you are waiting to see a vasculitis specialist might I ask what other symptoms have you got .only I went to my doctors today because I have had really bad sinus pains for 2 months with earache bad cough hoarse voice really bad night sweats swollen neck I also have fibro and under active throi I asked her if I could have vasculitis she just laughed so I asked if I could be refered to an ent specialist which she did,nt see any point in as they would only give me a nose spray I have had same problems for 18 months

Tillyray in reply to vena1

Hi vena.I apologise for not getting back sooner, but I have been suffering with a flare-up of symptoms caused by 'who knows which condition?'..My symptoms are complicated, and so diagnosis-other than fibro- has taken very many years.I am told symptoms overlap with many conditions and for me that is the three conditions, Fibro, Hypermobility EDS and Vasculitis..

I was only recently told by a rheumatologist that I am affected by Hypermobility Ehlers Danlos Syndrome and because this is a multi body system disease, it could be the cause of all of my symptoms? and so I will now be seeing an actual specialist in EDS soon..

Because I have other symptoms that may or may not be vasculitis? I am going to see a specialist to rule this out or in. My research and symptoms of kidney involvement, where I have persistent non-visible haematuria-microscopic blood in urine- and aside from this I get regular urine infections, has lead me to believe vasculitis is a strong possibility.A nephrologist has given me two possible diagnosis for the kidney involvement; Iga nephropathy or thin membrane disease, but kidney involvement is associated with vasculitis.. I also suffer with illness and symptoms fitting the vasculitis camp,this is; night sweats, painful heavy legs, with possible blood vessel involvement I.e 'fizzing' type pain in cells in lower legs, mottled colour changes on lower legs, blood in nose and clots when blown, also ankle, feet inflammation which has caused disability..Fatigue and pains can also be apart of vasculitis conditions and it can affect your overall health. It can also be serious..Not all vasculitis conditions show in blood results.

Many people with vasculitis fight for diagnosis.GP's or General rheumatologists' can not diagnose it and it can only be diagnosed by a vasculitis specialist..I have a forthcoming appointment with an actual vasculitis specialist who I was advised to see by John Mills at vasculitis UK. I asked my GP to refer me under the 'choose and book scheme' to this consultant of my choice..

If your GP is not taking you seriously then I suggest seeing another doctor or changing practice..It is difficult at first to take charge over the doctors, until you realise you are being left to rot and no one else is going to do anything if you dont..its a long road,a tough battle but you get there in the end..Dont give up If you feel your symptoms aren't all to do with fibro..In my experience, doctors lazily try to use the fibro diagnosis for everything..Don't let anyone fob you off!

Best wishes and good luck x

vena1 in reply to Tillyray

thanks for getting back to me sorry to hear that you have all these problems and hope you are able to get some help for them. it is difficult when seeing a doctor to explain the problems that we are having and then for them to get dismissed for fibro or its part of under act/throi good luck to you and your son


Go to doctors Sweating is not a good thing for any one

Hi JD57

I am so gneuinely sorry to read this, and there is a medical condition called Hyperhidrosis that appears to affect many Fibro sufferers. I have pasted an excerpt and a link to the NHS Choices cache about this below:



Hyperhidrosis is a common condition in which a person sweats excessively.

The sweating may affect the whole of your body, or it may only affect certain areas. Commonly affected areas include the:


palms of your hands

soles of your feet

face and chest


Both sides of the body are usually affected equally – for example, both feet or both hands.

The sweating doesn't usually pose a serious threat to your health, but it can be embarrassing and distressing. It can also have a negative impact on your quality of life and may lead to feelings of depression and anxiety


I want to sincerely wish you all the best of luck, and please take care of yourself.

All my hopes and dreams for you



I have this problem to the extent that I have to use a fan in every room and it takes more than half an hour after a shower to stop sweating from face, head, neck. It's a major dysfunction of the body's internal thermostat in my opinion and I believe it is fibro related.

I am also 43 and male so I certainly can't blame it on the menopause 😂

All the best,


peck in reply to lovenothate

Will, I have the exact same issue and h Ave been thru menopause so it's not that.My dr is trying to sort it will post is she does.I wish you the best as I know it is a miserable feeling.Best wishes.Peck 🐤

lovenothate in reply to peck

Thank you Peck. I'd love to hear what you find out too. Good luck with it,

Will 😃

peck in reply to lovenothate

Will, Thanks, I will definitely post if she finds something. I hope you get some relief as well. Have a good day. Peck.🐤

I have that too but because of the menopause and not far as I'm aware. I'm prescribed a very low dose of Oxybutinin which helps a bit with the facial sweats. Ask your GP if he/she can help. Good luck xx

Hi JD57.

I too have a heavy sweating problem. So much so that l often wear a small face towel around my neck when l go out. It's often worse when one is completely bald! In cold weather l often have to wear light (er) apparel otherwise l start to sweat by overheating. There are some sweat limiter moisturisers available which can help to reduce the problem. Zinc based ones (?) in particular.

Yes I have them too mine get so bad I have to change clothing 3 times a day. My doctor thought it was just hot flashes too but it wasn't so that is where he dropped it. Would be nice if they would help figure things out to help you. I am finding a lot of our medications make the problems worse, but you can't just quit the meds.

I am working on home remedies with oils to see what will help,because I hate sweating and stinking.

I thought it was just me. My family could be complaining that it was cold, but I could be sitting there in shorts and t-shirt 😁

Hi hun

Yes me, been having these for nearly 6 years now and it really DOES get you down, as soon as I start to do anything like getting dressed walking etc I start to sweat, worst is going from outside to inside. Busses are arful, find myself getting on and off because I can't handle the stares or people moving seats.started getting night sweats a few months ago to add to it. I sympathize with you I don't socialize because of it.

Do you sweat and shiver?? I do this alot its like our thermostats broke.x

I have exactly the same problem. Sweating, burning up and also periods of feeling very cold. I also get Night sweats sometimes, something I never had during the menopause. The burning up does feel like hot flushes at times, although the menopause is far behind me. Certain things can start up the burning up feeling. I notice stress, eating certain things-international politics at the mo. If I rest, it passes.

Hope that helps a bit. Take care, H x

It may be an idea to consider medication you may be taking has a part to play in these temperature raise/fall .

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