Is feeling extremely cold part of fibro?? Up to about a year ago I was always hot and sweating - I am a rather large person, but I'm constantly cold these days!! I'm always wrapped up in jumpers, something I never, ever wore, and my hands are like ice!! I notice I'm going for a wee more often too. Feels like I have a full bladder but when I get there there's hardly any!! Someone told me this is a symptom of fibro. Anyone else have these problems?? XX

17 Replies

  • Hi sue57 -- I suffer with extremes of temperature -- sometimes I am "roasting" hot and others I am freezing cold -- sometimes have to put on woolly socks and jumpers, other times I am "stripping off" and fanning myself. I also have "irritable bladder" -- when I get a sudden uncontrollable urge to pee!! Always have to make sure there is a "loo" handy!! (if this is a new symptom for you, maybe you should just check it is not a urine infection -- does it sting when you "pee"?) I believe, from what I have read, that they are both symptoms of fibro. It has so many "different disguises" this condition --the list seems endless -- always a surprise what will "pop-up" next :) xx

  • Thanks I don't have stinging when I wee, thank goodness, I always make sure I drink enough fluid to flush everything through!! But you're right, this fibro throws up something new all the time!! XX

  • Autonomic Dysfunction (sometimes called Dysautonomia) of some kind is common with Fibro: this simply means that the Autonomic Nervous System (ANS) isn't working properly. The ANS keeps various factors in your body at normal levels, including heart rate, blood pressure, perspiration and respiration.

    Autonomic Dysfunction with Fibro can include not being able to properly regulate your temperature - people with Fibro are often either too hot or too cold - and fainting.

    Info taken from our main site at FibroAction, for more info please click on the link about symptoms etc -

    Hope this helps!

    (((hug))) xxx


  • thanks Libs, I didn't know that there was a name for this, I just tell people that my temperature control is shot!

    It's horrible but more than that I find it embarressing - who wants to see a rather 'portly' 60 year old, stripping off on the bus when everyone else has scarfs & gloves on. Now at least I know what to call it

  • My pleasure Cobweb. I always think it's some consolation to know the symptoms we have are Fibro related and that they're not caused by something else. Sounds strange I know, but we have enough to deal with already without anything else. Hope that makes sense. xxx

  • I'm glad to hear that this has a proper name.

    I am constantly going from freezing cold to boiling hot, and just thought I was having a very long drawn out menopause! I guess this is never going to go away, then!

    I tend to dress on the cool side, and always make sure I have a wrap or pashmina with me so that I can wrap up when the chill strikes.

    I'm not sure which is worse - too hot or too cold. Thank goodness for ice-packs and hot water bottles! xxx

  • Hi Cobweb, your stripping off at the bus stop made me think of.......When I had to go on the bus to the shop it was chilly so I went in my legging's as that's all I can manage to dress in. Anyway I had a sleepless jacket on an a blouse, the stares I got!!!. Then on the bus the sweat drips down my face, I so try to wipe it away without been noticed. Hot-Cold it's difficult eh, you take care Dianne51

  • Hi Sue, yes I suffer from either being extremely cold or extremely hot (it's hot today so am in a t-shirt............). I also suffer from feeling like my bladder is full and when I get there not much happens, then 10 minutes later it feels full again. It is extremely annoying, I visited the incontinence clinic a couple of years ago and they could find nothing "physically" wrong and told me it was part of the joys of fibro.

    Hope you improve soon (or warm up)


  • I go from one extreme to the other also. I have underactive thyroid also (due to having overactive thyroid 28yrs ago and having 3/4 of it removed) Anyway I always put the cold/hot thing (along with a lot of other symptoms) down to my thyroid, but my GP says that as my levels are fine and have been for years, most of the things I was not mentioning to him and passing off as thyroid problems were in fact Fibro.I have the bladder problems too, It was only when pain became a huge problem for me that I had lots of tests done which all came back fine that my GP diagnosed Fibro and I am now waiting to see a rheumotologist

    I would worry though that some symptoms could be put down to just being fibro so probably best to get any new symptoms checked out. Hope you feel warmer soon. BTW I am thin with a slight frame but still have so many layers on to keep me warm, layers also enable me to strip off as needed when I get too warm. I am never just alright I'm either too cold or so warm I feel I may pass out!!:)

  • Yes, I have also become very suscebtible to cold and heat, which seems to vary considerably, sometimes when it is not cold outside, I just cannot get warm at all, my left hand in particular is freezing cold. I find that I need to keep the house at a fairly constant 20 c to remain comfortable . I also find being too warm very uncomfortable. I am of the opinion it is yet another of my symptoms, but do suggest that anyone with similar symptoms get their thyroid checked out, if not already done so , as many people with fibro also have hypothyroid symptoms.

  • Do you have a low body temp too mine averages between 35 and 36.7 only reaches 37 or slightly over if I have a fever!

  • Hi, if your bladder symptoms become a problem for you it might be worth mentioning them to your GP. There are a couple of meds that might help - oxybutynin and tolterodine. I didn't get on with oxybutynin but take tolterodine when the old bladder gets too insistent and it calms down within a day or two. Big relief in more ways that one! x

  • def have this symptom, sometimes Im freezing cold and pouring with sweat. Unless you also experience you dont understand how horrid it is - wearing layers is the only answer, but also could be menopausal for me as came off HRT after 3 years post hysterectomy to see if that had any positive impact of fibro/CFS, was also worried about breast cancer. Sage is supposed to be good for sweats. I live permanently with a heat pad I can stick in the microwave and an electric blanket at night although that often means having to change PJ's which get soaking wet. In order of most horrid symptoms Id put it 4th after pain, fatigue, depression. Hate this illness! (having a flare at present been asleep for 4 days v fed up so came back to this site for some identification)

  • I have times when I'm too hot and sweating but can just strip off because my legs and shoulders are freezing. I hate that ! Happy new fibto day x

  • I am very odd lol. In the winter I am too hot and in the summer I am too cold. But recently I have been melting, no matter what the time of year as I am going through the change so for now I blame that. But I do believe it is a symptom of fibro. And last night I had huge patches of cold on my thighs, so annoying because the rest of me is too hot. I would get it checked out xxxxx

  • Apparently certain drugs like amitriptyline interfear with temperature regulation. I hardly have a problem with it since coming off amitriptyline.

  • Yeah I heard that but I had these problems long before I started taking Amitrips so I am thinking it is just me, although I do notice some milder difference when I take them, But having had a years break from them before never made much difference. I am glad things are better for you by coming off them xxxxx

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