feeling the cold

[Brychni]

For quite a while now I have had serious intolerance to the cold which is now interfering with certain activities or at least making me nervous about doing certain things.

I've got Raynaud's which, is pretty much under control since I have been on hydroxychloroquine. It doesn't happen very often but when it does it's a million times worse in that it never used to be. It is so painful now it makes me cry. Anyway, it's not the same kind of cold.

I struggle to get dressed after a shower because being in a cold room is so traumatic. I have an electric blanket which I'm still having to put on now even as the weather is warming up a bit, because I can't stand the cold touch of the cotton sheets. And when I forget to put it on , even with wool socks, pyjamas and a wool shawl (! - very sexy) if I go in cold, I stay cold and NOTHING will warm me up.

Last week I went to a wool event and although I was dressed warmly and moving about I was so cold that had I not been driven by a friend I would have gone home. I bought some wool socks which helped a bit but the day seemed to pass me by in a fog because I could hardly think straight. Whenever I leave the house to go anywhere I have to think about the temperature. It's ridiculous. the thought of swimming, although I'd love to do something in addition to the daily walking, fills me with horror because of getting into cold water, getting out and being cold. I can't do anything that involves standing about in the cold even with lots of layers and the right fabrics - gloves wouldn't do anything.

It seems to be really bad at the top of my back, between shoulders and back of head and that's what makes me feel so ill

I'm aware that some people do just feel the cold more, but I was looking at all the other people at the event and there some blowing on their fingers and jogging about a bit but they didn't look like they were in pain like me. Surely this isn't normal?

In total contrast, on Saturday I sat at the outside tables in a cafe in town and had the full glare of the sun: it was really, really hot and total bliss but also I got 'too hot' quite quickly. Is there something wrong with my inner thermostat?

[LadyTrundle]

So sorry to hear how you are feeling. I recognise some of the experience you describe and yes, I think I’ve read that Raynaud’s people do have messed up inner thermostats.

But the menopause also does that … not wanting to pry … and also thyroid issues. Feeling cold is very much a thyroid symptom, but can be easily missed in Raynauds people as we’re always cold anyway.

So - have you had your thyroid checked and might you be menopausal?

After that, some of the companies that sell battery heated gloves also do heated neck things and heated body warmers. Could be helpful? A man told me years ago that he found the secret was to keep his chest/ neck, ankles and wrists warm.

As for getting out the shower - I will often put a hot water bottle in the bed, then as soon as I get out of the shower, quick rub down, big dressing gown on then back into bed till my temperature comes back up and I can face getting dressed.

Good luck.

[ArthurFoot]

I don't do anything if there is a risk I'll get cold! That includes having a shower ... I always have a bath because I feel ill if I shower and it ruins the whole day. I have a bath at night so i then get into a warm bed .... any dip in body temperature I can't control .... can't get warm again and i can completely relate to having brain fog if i get cold. I am 60 and all my memories even as a young child relate to whether I felt cold or not. My mother aged 92 tells me even as a 4 year old I would whinge if I was cold! I always wear a scarf or in the summer an extra sweater around my neck or shoulders .... that seems to work really well. But generally have no control over my body temperature... too hot or too cold! I am far better in a hot climate....actually a different person! Much more relaxed. In the UK I have to keep my heating at a constant 23 degrees ... if not my body temperature becomes erratic.

My biggest problem is that people without the illness just don't understand .... and I get really fed up with the constant criticism so I just avoid situations. After 30 + years I am running out of energy and the medical profession are offering no solutions.

Stick with people who are empathetic and kind and try to find solutions that work for you

[Rubytunes]

hi

So sorry to hear

I feel cold from inside out if that makes any sense and can’t get warm but then have a very hot spell each evening between 8 and 10 ….. I’ve now seen a rheumatologist and told Gp numerous times and they ignored it- I apparently have Raynaud’s phenomenon and normal thyroid- not hot flushes like menopause so no idea what’s happening really

I use fleece/ velvet feel type sheets - easy to wash and dry and no cold bed to get into and surprisingly cope well with warm weather too. I’ve got a heated throw which I put on when the cold thing happens as it stopped me sleeping, which helps a lot

Take care and hope you get some relief and answers for your symptoms x

[Lou1936]

I have the same issue with the cold. Even at 60F I shiver and my fingers turn purple. Some colder days I can’t stand going outside. If the weather is damp it’s even worse.

I have resorted to wearing battery operated heated gloves, socks and vest; which I ordered from Amazon. They aren’t the most comfortable things I’ve ever worn but they do help me tolerate the temperatures better.

[Monica628812]

hello - so sorry for you! And for all of us- I read the responses and have to say that I take a hot bath before bed. My feet and hands don’t warm up unless I do.I also ordered a heated mattress pad and it is wonderful. Check Amazon- mine has Sherpa to make it softer too! It truly helps. Good luck - this is just something we have to learn to live with.

[Nw6London]

Hi there, it can be such a horrible experience, can't it? You really learn to manage and mitigate an attack. I have secondary raynauds which has progressed really quickly and aggressively and my daily go to's are:

- washing up with gloves, including when washing fruits and veg. The cold air on wet hands brings on an attack.

- rechargeable hand warmers

- rechargeable heated insoles (thermrup are by far the best, I've found, but quite pricey)

- disposable hand and toe warmers - the ones that stick to your shoes/ socks - particularly for the warmer months where its not practical to wear my heated insoles

- heated gilet by Dukuseek on amazon is incredible.

- wool socks

The recommendations on the heated blanket are great. I also use flannel sheets and flannel pyjamas too!

In the summer, anything above 21/23c is in bearable! Swollen, puffy hands and heat rash. I stay out of the sun and wear loose (linen) clothing and hats. I also have a little fan and use a water spray at times. But generally find that i have to be really conscious about prevention to not suffer adversely!

Good luck! I hope you find some use and relief on these responses.