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Fibromyalgia Action UK
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Cold knees, hands and feet?

Anybody having this as a big problem from Fibro? My doctor has done all sort of tests and cannot find a single cause, it’s so bad that I am in bed constantly absolutely freezing. Would love to know if any else has this sensation?

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I have this problem and i have Fibro as well. I found out by my own research it’s a symptom of neuropathy. At least in me anyways.

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Thanks for letting me know you experience this too! I’m in bed freezing currently, having an array of panic attacks because I’m convinced this coldness is going to kill me lol

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I know what you mean! Once my entire body head to toe felt into a cold shock for 30 mins. It was scary but it did stop. For the most part I try to stay near my heating pad. One way you can tell if it’s neuropathy is if it feels cold to you but if someone tries touching you, you don’t feel cold to them, which mean it’s the nerve damage.

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See this is my problem, my whole body is freezing to the touch, possibly more anxiety related, as I’ve had all the tests going. Bloody anxiety mixed with Fibro is just wonderful 😂👌🏻

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Hi Wrinkledpetals 😊🌸🌿🦋

I suffer from this and more areas.

Have you been tested for thyroid dysfunction or Raynauds??! I have hypothyroidism and Raynauds Phenomenon. They both cause cold sensations. I’m sorry you’re having problems with getting it diagnosed and treated. Please take care of yourself and hope relief comes soon.

😊🌸🌿🦋🤗💕😘

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I’ve had blood tests for both but nothing came back so I’m not sure if there are other tests I should be aware of? 🤔 Thank you for the well wishes though! It really is horrid!! 💙

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Sorry hun. Try to warm up...there used to be knee warmers..,light weight gloves...thicker socks or an electric blanket might help if not tried already. Best wishes.

😊🌸🌿😊🤗💕😘

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Thank you for your advice. ❤️ so much appreciated 🖤

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I often have freezing knees and thighs that also have a strange kind of freezing/burning sensation as though they have been burnt all very strange it was one of the first things that started before all the other fibro symptoms. I can out any amount of blankets on but those areas can stay having that cold feeling even if the rest of me is boiling hot. My hands are always either freezing or boiling you have my sympathy.

By the way went into Lloyds the chemist today and they had a great foot warmer on offer for £14.

You have my sympathy.x

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It’s such a huge relief to hear you have the same ailments! Of course I’m so sorry that anybody else has to suffer this way, but still such a comforting feeling of being less alone! I also have this problem, like I have had scalding hot water poured over me. So bizzare, do you mind me asking if you feel like anything aside from keeping warm/cool helps ?

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I did find a relaxing soak in a warm Epsom salt bath and gently massaging the cold bits and then getting straight into bed with bed socks on a Jim jams warmed around a hot water bottle helped but unfortunately in our new place there was only room for a shower. I have bought an electric blanket and pop it in about 15 minutes before going to bed and that helps. Unfortunately, I haven't found anything in the day that helps I have bought long John's etc and worn thick tights but none of it seems to make a difference in the day unfortunately. If you find something that works please let me know.

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I find the only thing that works is eating almost constantly lol which is doing absolutely nothing for my waistline! Haha but I’ve give your method a good go ^=^

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Eating makes me hot too lol.

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Yes, I have these symptoms too.

Last night once again, I was cold to the bone. I took my temperature upon waking it was 35.01 and now I am aching back of head, shoulders, upper back. I had cocodamol in the night (warm water effervescent tablet), now taking paracetamol. I also put electric blanket on for an hour whilst in bed. Then I get hot if I fall asleep. The burning begins.

You are correct, it feels very frightening being icy cold, even to the touch. I dread going to the bathroom in the night as I shiver. Then I put my dressing gown on and get back into bed.

This cold symptom does not happen every night but approximately twice weekly. It makes me miserable.

I suffer with hypothyroidism, sjogrens syndrome, ?lupus, ctd, and one locum consultant told me fibromyalgia... who knows?

I will be seeing endocrinologist tomorrow for 6 month app. I'm going to discuss this symptom as he has me on 50mcg less levothyroxine than I usually take to get a baseline observation. I believe cold may be a result of needing more meds.

Don't rule out hypothyroidism. Go on Thyroid UK and see how many people don't get treated despite their blood test. GP uses guidelines that are not always compatible with good treatment.

I get burning toes and legs some nights. This I believe is a sjogrens/lupus ctd symptom.

Start taking your temperature and keep a diary to show your GP.

Good luck.

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This is how I feel all the time its mostly freezing but if not then burning. It’s absolutely horrendous, can I ask if you suffer with anxiety at all? I do and the doctor keeps telling me it’s anxiety, despite me having all symptoms of an under active thyroid :-/ very frustrating indeed. I am SO afraid of going to the loo because I freeze pulling my pants down haha it’s just over all an absolute nightmare, I have two children and I can barely do my parental duties as I’m constantly in bed or in a bloody onesie, it’s left me feeling most suicidal :/ sorry to hear you are having these symptoms too, here’s hoping they subside for you! ❤️

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No anxiety other than meeting medics who don't understand thyroid issues. Lol. Since I ditched GP that didn't know about thyroid, my anxiety over ever getting correct treatment has gone.

I saw endo for second app today, he has increased my levothyroxine. He is going slow but sure, as I had thyroiditis after taking pain relief for prolapse discs, and I became levothyroxine toxic.

I mentioned the very low temperature (yes, it is frightening, but I wrap up, pop electric blanket on so do settle), he says phone him after 3 mths increased dose, as he may prescribe an additional hormone. I feel the increase in levo will do the trick.

Your doctor sounds like my previous one. I figured if I kept doing what I always do, I would just always get what I always got, rubbish!! I changed GP practice after 28 years. I'm getting sorted properly now.

Good luck.

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I have cold hands and feet in general it can be hot outside but I'm wearing a fleece I think this is a common symptom fibromyalgia

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I also suffer cold hands feet etc and I am the same as Pryja could be scorching outside and be wearing fleece heavy jumper sometimes worse if I haven’t slept good or been ajitated about something Fibro is a nightmare so many symptoms still trying to get head around it all diagnosed may 2017 hope you feel a bit better 😄

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Don't know about the knees but hand and feet could be a symptom of Raynaud's disease. It don't show up in blood test but it's a lack of circulation. Even in the summer you can have it. When cold it can be very painful. Just a suggestion. X

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Yes and numbness/pun and needles x

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