Freezing ice cold toes make me so unhappy

Freezing ice cold toes make me so unhappy

Hi all I have been told I have Raynaud's after a year of ice stone cold toes it all started after I had a lot of stress and upset in my life and suddenly I felt lots of tingling numbness and cold in my feet my toes on the tips turn purple/blue mainly when I'm sitting down it drove me crazy I kept going to the doctors who sent me for tests and February this year I had a thermography test at royal free which showed all my toes were lacking blood flow and told I have Raynaud's.Would love to speak with others who have this with their feet as it makes me so unhappy,I'm not on any meds for it yet but think I need to be,seems I'm fine in bed toes are always nice and warm but after 15-20minutes being up my toes go ice cold and stay like that all day less I exercise or go into the bath or in front of fire,when I stand up my knees turn reddish and below my knees go blotchy I'm guessing its because of the circulation due to this with my toes,if I'm sitting down my toes go blue/purple on the tips if i rub them it goes.I have quit smoking in hope it helps too and have treatment for my lower back as I have trouble with it which unsure if causes this too but any advice and help people have please share as I just want to be warm again and feel my feet. I have posted a photo below but they don't look as purple in the photo but the tips are the only colour change areas of toes.

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26 Replies

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  • I just purchased a throw that heats up. My toes feel so much better. It's not a cure but it helps.

  • Where did you get it from sounds great.☺

  • Wayfair.com

  • Thanks will check it out☺

  • I got one in John lewis, it's brill :)

  • I have had problems with my feet and toes for a long time. Just before I was diagnoses with scleroderma my legs turned purple from my ankles to just below my knees. I was taken into hospital and given an iloprost infusion for 5 days which helped. I now take Nifedipine which has almost cured the raynauds in my fingers and has helped a bit with my toes but they do still turn white and painful, sometimes for no reason at all and especially if I get cold. I always wear ugg boots in winter. My rheumatologist said I should wear them even in summer. The most important thing is to keep warm. You have done the right thing in giving up smoking. Maybe Nifedipine would help, you might want to give it a try.

  • Its so very annoying isn't it and uncomfortable its really does bring me down a lot,mine seems to be their all day its not just cold related at all I think a lot to do with emotional stress and upset maybe as it all started for me last year I lost my dad and didn't cope very well,since then I only get warm toes in bed,in a bath or in front of the fire and its strange they only go blue or purple when I sit down😕 I hope medication can help for me and that I get along with it I have read a lot of people have side effects how do you find taking it ?

  • Keep in mind that Raynaud's is triggered from your core not your extremities. That's why it's so hard to get your fingers and toes warm by just bundling them; You have to increase core circulation. Don't be embarrassed to keep a pair of gloves handy in warm weather and when it's chilly out put a jacket on. I have learned to love scarves and almost always have one. I wear it around my neck or can open it up like a shawl. Quitting smoking is huge because smoking causes vasoconstriction which exasperates Raynaud's. Once you get a handle on your triggers and avoid them you will be able to minimize the occurrences. You got this!

  • I think that's where I may go wrong I need to keep my core body warm I always just focus on my feet wearing 3 pairs of socks and slippers.I'm hopeful that giving up smoking will help me a lot I've been quit for just over a month only and not noticed any change yet but is such early days so fingers crossed.Thankyou.

  • When I first started taking Nefedipine It made my blood pressure really low and I felt faint. My consultant suggested changing to a slow release version which I take twice a day. I have had no further side effects so best ask for the slow release if you take it.

  • I have had iceblock feet ever since I was diagnosed with RA six years ago. At least it started with feet that felt they were walking on burning coals during my menopause but then I started getting ice cold feet and hands while warm flushes ran through my wrists and shoulders simultaneously.

    The icy feet became so bad that I could barely think of anything else other than how to warm them up. The pain of cold feet is horrible! It didn't seem to matter how many socks I wore or even if I was under duvet and blankets.

    Then if I put them in hot bath or used hot water bottle the colour changes started dramatically and they would tingle and burn with excruciating pain all night - same with hands but not as bad. Hot to cold or vice versa - both cause severe pain.

    My toes and soles only turn white and then red - no blues or purples.

    Now I realise that it's been affecting my hands too but I usually have gloves on so don't notice until my finger tips have already turned deep red. Still this iceblock sensation in hands doesn't cause the same disresss for me as it does in my feet. I guess they are easier to move around a lot and rub than feet!

    We are about to move to a house with underfloor heating in the downstairs and it will be heaven I hope -although I am going to have to focus more on keeping my core warm - thinking of taking up yoga and swimming.

    My Raynauds is secondary and it's taken me a long time to realise how much it affects me as an aspect of my connective tissue disease(s).

  • Thankyou.

  • I totally agree with keeping your core warm, but also your legs. I alway wear M&S heatgen thermal leggings under my trousers and wool or angora socks. Before moving to our present house we were in a temporary flat which had underfloor heating, absolute bliss for the feet. Keep warm.

  • Littleones,

    I also have Raynauds, but in my feet and fingers. As a male, was informed to try Sidenifil, the active ingredient in Viagra. At first I blinked not believing. However, it made sense because what it does is open up the veins to allow for better circulation. I do not know if Sidenifil would work for a woman. I take two 20mg tablets, one in the morning and one in the afternoon. Other things to get are thick wool socks, and Gingko. I also take this to help with circulation. Have tried many remedies and so far the Sidenifil and Ginkgo work the best. Good luck.

  • I also take Viagra to try and get blood going round my lungs. Seems to help a lot and I can't think of any reason why women shouldn't have them. I asked if it would help with Raynaud's and was told probably not, which turned to be the case. What has helped my toes is sheepskin bootees. I also have some compression stockings from being an inpatient for a while. I still use these from time to time and they do keep my legs warm.

  • I am a woman and have just been prescribed Sildenifil for my Raynauds after Losartan didnt seem to work. So far much better - I am taking 3 x 25mg tablets a day however the blurb in the packet is concerned about pregnancy and fertility in women (not a problem I have any more - far too old!) Gloves, scarves, warm insulating shoes and hats all vital and body warmers brilliant too. I also have learnt to relax my shoulders/neck muscles when attacks begin and this seems to help too. Think about things that trigger your attacks so that you can avoid them. You will find you CAN have some control over this crazy condition. Good luck.

  • My hands and feet are always cold even in thermal socks I do seem to spend most my time in bed it's the only place I get warm

  • Hi,don't feel bad about it,we all share your problem here. :-)

    Personally,I have tried so many medication but they just give me terrible headache so I only use Gingko and Hawthorn.

    It might sound funny but I put chilli massage oil on my feet.It doesn't smell and keep my feet warm all the time. :)

    Agi

  • With me it more my fingers toes are painfully sore but my fingers are worse my consultant has put me/ on sindenfel witch seems to be working it as eased some of the discomfort when I get so so cold I always get into a hot bath it is what works for me

  • I am new to this site but have had Raynauds for years, my feet are always cold and go blue but no one said it was connected to Raynauds. I know at least its possible to get it in your feet, I wasn't aware before. I don't take any medication, not been offered any, but maybe I need to ask the doctor. I wear tog rated socks which help but I find if I keep my feet raised in the evening, when I'm watching tv it helps. I am hypothyroid so I feel cold especially in the winter, we are lucky to spend 3 weeks abroad in the winter, but even then I still get numbness and whitening of my fingers.

  • Hello Littelones,

    Giving up smoking is a crucial step. You need to boost your circulation.

    May I ask what you are typically wearing on your feet and ankles in those 15-20 minutes after you have got up?

    Tim

  • One pair of socks.

  • Oh dear. I can recommend the virtues of cotton sports socks and ankle warmers. The socks came from a cheapo shop. If your legs and ankles are warm then your blood has a better chance of being able to carry its warmth to your feet. I prefer cotton because I find wool sometimes gets too sweaty, and so does artificial fibre mix. If my socks get sweaty then my feet chill. I tried for several years with woolly ankle warmers knitted by a friend but I found they got in the way of my trousers. I have now made by own, quite simply, by cutting off the tops of some unwanted socks and using them as a sort of discrete sleeve over the sock tops. Nobody notices, but they work well. Indoors I wear leather sandals with padded soles (made by Brasher) - even in winter - and outdoors I wear walking boots (one pair 'for best' made by Scarpa; another by Keen) with good ankle padding and fitted with orthotic in-soles from the NHS (bless 'em!). Scleroderma has removed the fatty padding from my feet, so without the orthotics it feels as though I am walking on my bones. My feet have thereby ceased to be a problem.

    I wish you well in your quest for warm feet. Don't be afraid to visit outdoor shops and choose some footwear which will actively look after your feet. Try some ankle warmers. Do some experiments.

  • I'm female with secondary Raynauds and scleroderma and I am also prescribed sildenafil - consultant prescription only though, in my area. 3 x 25mg daily. Indoors - and I live in a cold farmhouse - I often wear a really good cozy pair of slippersocks (lovely pink Joules ones!!) which I find best for warming me up. It is often only when I go to bed that I realise how cold my feet are - I have 2 hot water bottles in bed (bedroom is unheated) which is absolute bliss. I wear thick socks and work boots (farming) a size too big out of doors in winter (to leave room for the socks), ankle boots a lot of the time if going into town. I know if I have to wear 'smart shoes' with a skirt then my feet will be freezing, often in summer too, my GP always comments how cold and white they are.

  • "I know if I have to wear 'smart shoes' with a skirt then my feet will be freezing".

    Hmmmm...

    What's the creative, Scleroderma-friendly solution for ladies who need to wear 'smart shoes'? I can't help feeling that sufferers are condemned to suffer more than necessary through following social customs. I am a bloke and I wear pretty much what I like, but wonder whether we could not hold a Scleroderma sufferers fashion parade for ladies to see all the solutions they have found for having warm feet as well as maintaining social graces. Rigger boots and peppermint-striped dungarees? ;-)

  • Socks and thick boots alone are not enough for me - I need extra heat. I have tried all sorts over the years. Insoles with wires are a pain as they tend to disconnect and don't last long. Same for batteries clipping over the edge of boots. I liked Skunkx boots for a while but they have stopped making them! Now I send to USA for Volt slippers, which are brilliant for indoor use, although only very limited for outdoors.

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