Raynauds Newbie

[Nomis21]

Hi, I suffer terribly from coldness, even in the hot months my feet and hands get cold.

Constantly cold in the winter months, my skin colour turns purple and sometimes my fingers turn white, only way I can warm up is by having a bath which is sometimes 3x a day.

I also have heart failure.

I went to my GP and he's made a note on my records of Raynaud's.

Is there a test to diagnose Raynaud's ? Or is it just a case of evaluating the symptoms?

[Clangerscat]

Hi Nomis sounds like you need to see a specialist and have some proper investigations done so that you can be put on medication if needed. Get in touch with your GP again and explain the difficulties you are having and ask to be referred. In the meantime try to look after your hands, I would suggest you moisturise and massage them regularly and make sure your core temperature doesn’t drop as this has an effect on your hands. Good luck hope you have a positive outcome.

[strongmouse]

HI, I was only diagnosed with Raynaud's a few years ago during the Covid pandemic. I sent my GP photographs and then spoke to him on the phone. There don't seem to be any specific tests.

I go to be with a hot water bottle for my feet even in the summer!! Only way I can get off to sleep as they are always cold. A warm bath does relieve any pain. I understand that there are some medications that can be prescribed if the condition is really bad or very painful. You would need to speak to your GP.

[Nw6London]

Hi there,I also suffer from Raynauds - secondary, as a result of scleroderma. The summer months give me no reprieve and my hands and feet go blue even by simply after washing my hands. A few things which I found to be helpful.

- moisturising with a thick hand balm after washing hands. Currently I use burts bees hand salve

- rechargeable hand warmers from amazon

- heated insoles for the winter. Thermrup do the best heated insoles and battery pack imo. And ive tried loads. 😭😭

- merino wool gloves and socks. Cotton isn't cutting it.

- the brand Icebreaker has some lovely very warm items. (But very pricey). Liner gloves and gloves which I use in the car or in the summer.

- washing dishes with gloves (and with warm water)

- heated blanket (a lifesaver!) That should help with not needing a bath 3 times a day

Not sure if you work in an office/wfh etc... these have been BRILLIANT for desk work:

1. Heatka "the hand warmer": a heated desk mat which sits under the keyboard. I used to use a heated fan, but it just wasn't sufficient. This is INCREDIBLE and I'm happy I stumbled upon it.

heatka.co.uk/products/heatk...

2. Heatka "the foot warmer". Another great product. It's a simple yet effective item. Heated air through a series of vents. Perfect for cooler days walking outside where your toes are frozen and you can't feel your feet. Which is every day without my heated insoles. 😄

heatka.co.uk/collections/ha...

Hopefully this helps. But, as others have said, you'll need to see a rheumatologist to get to the bottom of what's going on. Good luck!

[Nomis21 in reply to Nw6London]

Hi Nw6 London,

Brilliant thanks for your reply and great tips.

I do work in an office environment but due to a few health issues and because I tend to wfh more now.

I do use a heated blanket on my bed and just last night I had to put it as my feet were cold as ice.

For me it's my hands, feet and face that get the coldest, skin turns purple and I have days where I literally shiver uncontrollable.

Although I been to the docs and they have made a note of Raynaud's on my records I have never been investigated and just wanted to know if I should be asking the GP to be referred to get a proper diagnosis?

Really affects my life now and doesn't help having cardiac issues also.

Will certainly take on board your advice and look into the products available.

Many thanks

[Nw6London in reply to Nomis21]

No problem. Please ask to be referred to a rheumatologist and have a full ANA blood test done. That should bring up any markers for anything untoward. For me, the raynauds was the beginning of me being diagnosed with systemic sclerosis. (Hence the raynauds is secondary - caused by another disease). With these connective tissue diseases, it's important to get treatment as early as possible, as they attack the body. Thankfully, in my case, I had an early (but not easy/ straight forward) diagnosis. Scleroderma attacks the heart, lung and kidney and i have no fibrosis yet. If you live in London, the specialist centre for scleroderma and other connective tissue diseases is the royal free hospital. Dr Denton and his team are incredible. Note though that most GPs and even some rheumatologists don't know about these diseases, so it's important to push to see someone. Very easy to dismiss this as "just raynauds" (which it could very well be, but good to find out for sure.)

The raynauds alone can impact you life; making it hard to enjoy simple things without turning blue. It's upsetting, but hopefully can either be managed or medicated. Good luck! You've joined a very knowledge community.