Does anyone get inner chiliness with their raynauds?

[danacetz]

I am always cold.

[overnighthearingloss]

It really is best not to let yourself get to that stage.

Its difficult when around others who dont fully understand but wear layers and gloves, even indoors if necessary. Carbohydrates, for me, seem to provide extra heat.

You need to ensure that you have at least one warm room available

[Hidden]

I was particularly more worse when I took Adalat (Nifedipine) but now I've learnt never to get cold. Which helps but still doesn't remove my extreme pain.

[tinaparkii in reply to Hidden]

When U say U was particularly worse when U took adalat what do U mean exactly. I was put on this about a week ago. But av felt very light headed and dizzy since. But also doesn't seem to work as well as just the nifedipine did

[Hidden in reply to tinaparkii]

My feet with Raynaud's are hypersensitive, I walk on shards of glass with every step, this was exacerbated 1000 times more and the pain was intense just sitting or having a bath. Yes even the hot bath on my feet did not bring my feet to a normal temperature - they just remained ice cold.

[tinaparkii in reply to Hidden]

Wow. Sounds very painful. I only have it in my hands at the min. But my left one and I am left handed. The pain is worse tho in my full arm. Its awful. And on wakin in a morn. Its the most horrific pain ever. Ad the thermology test done just before Xmas. Ad shoulder x ray the week before that. Back at the raynauds specialists on Tuesday 8th Jan. So hoping for my results from them 2. Then im there again on the 12th Jan for barium swallow test.

[Anteater]

Yes, quite often I feel that all my organs inside my body are freezing - like a chill from the inside waiting to come to the outside - its like I have the flu!!! The only way I can warm my inners up is to have a hot bath and go to bed with the electric blanket on.....

[darkdreamer]

yes, sometimes I get so cold that I feel ill and the only way to warm up is to have a very hot bath.

[Jensue]

I do get very cold inside but it is always worse when I'm tired & that is quite a bit of the time! I do wear layers & gloves along with sheepskin boots. If my feet are cold this also makes it worse.

[winifred]

I agree with the others - try not to let yourself get into this state in the first place! I am also on Adalat and find that once my core body temperatue goes down I can't generate enough heat myself so extra layers don't do much good as I am not generating the heat to keep in! I find that sitting with a hot water bottle or heated pad usually does the trick, otherwise a bath or shower sorts it out. I try to never leave the house when i am already cold. Good luck - you learn over time what works for you.

[JemimaDoll]

I think this is very common, and I get it too, often no matter how hard I try to avoid it.

I did research to find out which materials mountain climbers wear, and it's all about high wicking materials (that carry sweat away from the body). So never layer with cotton, as it is not high wicking, and cools you down. So I layer with thermal vests, Uniglo 'heat tech' tops, silk tops and mountain climbing base layers. I wear lots of woolly jumpers - look at the label - cotton mixes are not too good, but wool/merino/cashmere mixes are good, with a bit of acrylic/viscose thrown in (but not too much). Fleeces are also good.

But of course the dreaded air conditioning in an office or shop can ruin all this...Also, I have just built up a collection over the years, of gloves all different types/thicknesses and colours. Sheepskin mittens are good. I always wear socks to bed, and about 5 layers on top. It's true - as someone else said - you learn over time what works for you, and what to avoid. Lots of good luck and warm wishes x

[loum42 in reply to JemimaDoll]

Hi Jemima Doll.

I was just looking on here for some tips and came across this post. I was looking for any tips on keeping warm, I am frozen already today, 4 september and am worrying how I am going to cope when it is autumn let alone now in 'summer'. Possibly a silly question, do you find it easier to layer up with tights under leggings or thicker tights with vests, dresses and cardigans or to wear jeans and jumpers, etc. I am wearing jeans and have done all summer and don't find them particularly warm and am wondering what is the best way to layer up and keep warm without being so bulky I can't move because if I carry on like i feel today I am not going to fit out my door through clothes! Thank you in advance and sorry if a daft question.

[Noddy32]

YES

I have had Raynauds symptoms (but Doctor says I don't have Raynaulds) for years

YES, I feel cold inside, even in a warm house

My body seems to sense the outside temperature, I can tell immediately when I wake up

if it is cold outside

The previous advise about staying warm is all good

but I find they do not always provide a full solution

NIFEDIPINE make me warm inside, due to increased bloodflow

BUT makes my ears burn and gives me an instant headache

GINGER pills, but go for natural and high quality versions, makes me warm inside

I can no longer get the natural ones that worked so well

GINKGO BILOBA (6000mg pills from Simply Supplements), one or two a day, is my current self administered, "inside warmer", that seems to stop me feeling cold inside

Neither GINGER or GINKGO BILOBA have any side effects (on me)

so I think these are worth a try

as I think that we all react differently to such drugs

Best of luck with finding a solution that suits you

[BarbJ in reply to Noddy32]

May I ask whether you were you on the prolonged release nifedipine Alanpeak or on the 'ordinary' stuff (if they do 'ordinary stuff' that is): just wondered if that might have made a difference.

Am glad you've found something that helps, but would see another doctor if I were you - more difficult if there is only one GP in your practice (I expect you've tried asking to be referred to rheumatology for more tests) but you can change practices these days without being black-listed (believe it or not). Also, have you asked your GP WHY he/she doesn't believe that you have Raynauds?

Finally, if there's a walk-in centre near you you might like to try there?

[Noddy32 in reply to BarbJ]

Thanks BarbJ

Probably ordinary stuff, as a while ago

I am seeing Doctor on Friday

Alan

[BarbJ in reply to Noddy32]

I just wondered the obvious thing, if ordinary stuff do you get such a hit all at once that it causes the headaches. Good luck with the Doc on Friday - it's difficult to be pushy if it's not in your nature but since working in the nhs I've learned that very often you have to be persistent, and even insistent, to get what you want (and it's fellow staff who've told me that as an awful lot of them have to do it too! We don't get preferential treatment).

[tall-tim]

Thermal vest, plus long-sleeved cotton vest + brushed cotton shirt + thin wool jumper + Norwegian pullover + cotton neck scarf.

Layers can come on and off as required.

[Roamer]

I get cold very easily and multiple layers is the way to go. However eating well is also very important. My hands go blue when I am hungry so there is clearly a correlation. I need decent meals throughout the day and also snacks in between to keep the inner fire burning and feeling well.

[Noni1]

I find a heated bean bag or a hot bath are the answer to this for me!

[Sue_Hazel]

I understand being cold inside, not just the hands, feet & nose. No medication or remedy has worked effectively for me so far, but I find I can block it out to some extent by never sitting still for too long. I rock climb & kiteboard (silly activities I know to undertake with raynauds). My fellow partners will never really understand just how debilitating the condition is, but best to do what you can within reason and always make sure you will be able to come inside somewhere warm immediately you have finished doing anything where you get very cold. Good luck.

[lupie-Cathy]

I used to get really cold around my kidneys feeling like someone had injected me with ice cold water then it would spread out all over my body even to my arms horrible, I must say though that since I've moved from the far north of Scotland to the south of England I very rarely get that problem now also my raynauds has been better too! I still get problems with my left foot ( I have peripheral neuropathy in that foot) but on the whole things have been much better so far this winter! keeping my fingers crossed it stays that way!

[LisaB356]

I misunderstood your question...I thought you were asking if any of us may react internally. I suffer all over my body (whatever parts are subjected to cold -- not just my hands) and also internally. If I eat or drink cold foods or drinks my gums, throat, tongue, cheeks, etc all swell and hurt just like my limbs and external parts. It's very frustrating.

I do experience attacks when I'm indoors, too. Sometimes in the middle of the summer I can be sitting at my desk and experience an attack -- usually in my hands or feet in that situation.

We just have to keep trying to keep ourselves warm and remember stress can be a factor in your attacks. I know it only exacerbates an attack for me if I'm stressed.

[Coldfeet]

Sometimes the only way to warm my feet is to eat a hot casserole! Prevention is best , I'm wearing an Exo heated jacket as I write this.

[AHM42]

This is a question often asked and the answer is yes, very often. However, as previous answers have shown, it is better to try not to get to that stage by using some of the many heating aids which are available. Remember that a change of temperature is just as much a problem as the cold.

[suzy66641]

I also get the feeling of inner coldness and the problem is however many layers I wear its like there is no heat to keep in. I also take Adalat but have been on it for years and never thought to question whether there was a connection just assumed it was another symptom of Scleroderma. A bath is good but as soon as I get out I'm cold again!

[alwaysfreezing]

yes i get it all the time and had it for ten years ive tried everything

[BarbJ]

I think I'm lucky that I don't often get inner cold - especially now I'm on Adalat, but when I do I fill a hot water bottle (or two) and either turn the fire up high or climb into bed in one of my fleece nightshirt.

Not possible at work of course so it'sa mini hot water bottle, thermal underwear and layers of fleeces for me (wool makes me itch like crazy). I couldn't live without my fleeces and think whoever 'invented' the material should get a nobel prize!! Something else I do some winters is book a course of tanning sessions - not for the tan but because I can even feel the warmth in my bones (not sure if that's actually possible but it certainly feels like that ) and it's wondeful. Of course the effect doesn't last long but for me it's worth it anyway. The worst of the cold and snow seems to be over for now but have just decided I'm going to book myself another course again soon.

As someone else has said, hot food is good too - if you are feeling up to cooking something.

[danacetz in reply to BarbJ]

What type of medicine id Adalat?

[BarbJ in reply to danacetz]

Sorry danacetz, should have said it's just a brand name for Nifedipine - I'm on the prolonged release ones, are you?

[sarahlovesben]

I find that there may be days and even weeks that I do not feel warm. The cold comes from the inside of me and radiates out. Many do not understand and assume that since I am small in stature and weigh 110LB that I "do not have enough meat on my bones". This is however far from the truth. I was diagnosed with Fibromyalgia 4 years ago and with chronic pain comes coldness. I had taken a walk outside in the cold bundled up and came indoors and noticed one finger white. I thought how odd. A few days latter after walking into a store, I looked down at my hands and both hands had white fingers. I started crying..scared. Now I look at my hands to see what pattern and what color they are. I am puzzled at the age of 45 to have such an odd thing happen and have never heard of this ever. I go to the doctor today for a check up and should I mention this to him?

[danacetz]

I am sorry to hear about this. Try to be at peace about your fingers it is most likely Raynaud's. The doctors all say it is not life threatening but it does affect your life . Wearing gloves and hand warmers inside gloves. Trying to remain calm because that will help with the Raynaud's. The medical research states that stress can aggravate a raynaud's episode.

Try to stay on some of these websites with other people who have raynauds because it will help you not feel so alone.

JUst to make sure that there isnt someother condition causing the raynaud's I would ask for them to test if you have any autoimmune issues. It would be best to go to the rhumetoid specialist for this.

Please try not to fight the docters if one say they suggest medicine for the raynaud's. I did this and I regret it because I suffered sever blue fingers than tingling and pain.

Warm hugs,

Dana