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Original poster

Tips on coping with Raynaud's?

27 replies

WhereAreWeNow · 14/04/2021 21:43

I've got Raynaud's syndrome and I feel like it's getting worse. I don't know if it's age or if it's just that we're having a chilly spring but I'm really conscious of how cold and painful my hands are. They are always ridiculous colours (bright red, purplish, white blotches) and they feel so stiff, sore and achy when they get cold. It's like they seize up and I can't use my hands properly to do simple things like use my mobile touchscreen.
I've also had a couple of really sore chilblains this winter.
I spoke to the doctor about it years ago and she basically told me there's nothing they can do and I just need to keep warm/wear gloves.
Has anyone got any experience of this? Have you found anything that helps? Do I need to go back to the GP?

OP posts:
Thecatisboss · 14/04/2021 21:46

I've got reynards too. I've got medication to take for it (lowers blood pressure and increases blood flow) however it makes me feel ill.

I have little hand warmers from Amazon which work well as I'm better staying warm rather than trying to warm back up again.

Tottington · 14/04/2021 22:26

Fellow Raynauder here!

Keep your core body warm. Wear long socks, thermal long sleeve tops, a hat... basically layer up!

I keep hand warmers accessible in my car and at work.

Elouera · 14/04/2021 22:32

OP- have you had it properly investigated by your GP or specialist? It can be linked to many other conditions (lupus being just 1), so you need to check there aren't underlying issues. If its been fully checked out, its layers you need- ideally thermal things from any Scandanavian country and heated gloves.

Lumene · 14/04/2021 22:34

A friend of mine found outdoor Lido swimming helped (?!?)

Not sure I would be trying that one though.

Sheldock · 14/04/2021 22:35

I have multiple pairs of "Turtle Doves" that I wear constantly. They really help with keeping hands warm, but as they are fingerless, I can still do everything.

Original poster
WhereAreWeNow · 14/04/2021 23:56

Thanks everyone. I already wear a lot of warm stuff. Lots of thermals, big coat, hat, gloves etc.

What are the hand warmers?

@Elouera no I wasn't properly checked out. I told the GP my symptoms, she looked at my hands, told me it was Raynaud's and that basically there's nothing I can do about it! Are there tests they can do?

OP posts:
Original poster
WhereAreWeNow · 14/04/2021 23:57

@Sheldock I've heard they're good for Raynaud's but wasn't sure about the fingerless aspect. It's my toes and fingers that are the worst!

OP posts:
Pippioddstocking · 15/04/2021 00:01

Vaseline all over your hands under the gloves really helped, keeps the heat in and acts like a separate warmth layer.

KurtWilde · 15/04/2021 00:13

I also have Reynauds and a very dismissive GP. I tick many boxes for lupus but until they can organise a blood test while I'm actually having a flare up of symptoms (they managed it once and lost my samples!!( I'm stuck in limbo.

I found layering up worked well but as I'm mid forties now and prone to the occasional hot flush that isn't working so great any more.

Clementine8 · 15/04/2021 00:46

Have you tried the silver gloves? My RA consultant specialises in Reynards and Recommended them. I’ve also tried the medication but didn’t like the side effects

Blimeyoreilly2020 · 15/04/2021 08:32

Hand warmers - you can get disposable (sorry environment) ones (that you crush to warm up) or re-usable ones that you charge up with a usb. I also have a dr who just shrugged and was totally uninterested! Didn’t realise there was medication for it @Thecatisboss ....but not sure it’d be a good idea for me as my blood pressure is already too low. The other (rather expensive) God send for me has been the invention of the heated steering wheel in the car - previously my fingers would go numb whilst driving, now they’re toasty summer and winter👍🤣

Tommika · 15/04/2021 09:29

Standard answer - get back to your GP

Check out the Sclerodoma & Raynauds society
www.sruk.co.uk/

Also seek it out on Facebook, YouTube etc

There are generally 3 forms of raynauds - disease, syndrome and phenomenon

I have been diagnosed with Raynaud’s phenomenon in one finger, and it’s likely to have been triggered by nerve trauma.
My hand can also go fully blotchy.

It took about 9 months of various tests, mostly ruling everything else out (and also flagging up a couple of things for further investigation but all fine there)

I’m on a prescription of Coracten nifidipine tablets which don’t eliminate it, but due to a couple of occasions where I’ve been away and lost my strip of pills it’s proven that they defiantly work..... for a very long weekend of 5 days in March last year it gradually worsened and also continued to be bad for a few days until the pills took affect again

It began for me in September 2018, I went to the doctor the following January and after all the tests went onto tablets in September 2019

I can stop taking them in ‘summer’ and managed to do without them for most of July & August 2019

I don’t like wearing gloves, but I clearly have to. So I have a lot of ‘glove liners’ and wear one on the hand if going through a temperature change, or when going into the freezer I use my other hand and might pop my bad hand into my armpit

For winter it has to be full on gloves, and probably with the liner as well

Gloves with silver thread are great, and they work with touch screens

My finger is triggered by the cold, a change in temperature (eg going into a shaded area on a sunny day) or from slight touch.
It’s probably the nerve element for touch as gently brushing something causes pain but holding something doesn’t
Sometimes I’ll just have spasms for no apparent reason

The pain is mostly sudden, and bad to severe (on occasion it’s the worst pain I have experienced), without tablets the basic pain equates to the higher levels of pain with tablets

emmathedilemma · 15/04/2021 09:34

I feel your pain too! I get it in my fingers and toes all year round. I find having your wrists and ankles covered seems to help - so pull long sleeves right down and tuck your gloves into them when going out, and ankle socks seem to keep my feet warmer than trainer liner type socks. i get it indoors as well, particularly when sitting working at a desk. I do things like put my trainers on the radiator before I go for a run and I've got some of those hand warmer things and some that you stick to the insole of your shoes.
I mentioned it to my GP once when I was there about something else and they were quite dismissive and just said that the medication to help usually has worse side effects than the reynauds.

Original poster
WhereAreWeNow · 15/04/2021 09:41

@Blimeyoreilly2020 heated steering wheels?! That sounds amazing. I often get white numb fingers when driving.
I've generally got normal to low blood pressure too so I'm not sure medication that lowers BP would suit me.
I've just ordered the Turtle Doves gloves (and a pair for my mum who has the same problem). I'm going to try putting them on first thing in the morning. When I wake up in the morning is the only time that my hands are warm.

OP posts:
Tommika · 15/04/2021 09:42

@Blimeyoreilly2020
Tell me about heated steering wheels

I wasn’t aware of them and have just searched them out.
Is yours part of the steering wheel or an add on cover?
Does it need to be plugged in to heat up, can you charge it and keep it running or do you have to heat it up then unplug to avoid tangling up when driving?

Whatflavourjellybabyisnice · 15/04/2021 09:46

@Tommika

Standard answer - get back to your GP

Check out the Sclerodoma & Raynauds society
www.sruk.co.uk/

Also seek it out on Facebook, YouTube etc

There are generally 3 forms of raynauds - disease, syndrome and phenomenon

I have been diagnosed with Raynaud’s phenomenon in one finger, and it’s likely to have been triggered by nerve trauma.
My hand can also go fully blotchy.

It took about 9 months of various tests, mostly ruling everything else out (and also flagging up a couple of things for further investigation but all fine there)

I’m on a prescription of Coracten nifidipine tablets which don’t eliminate it, but due to a couple of occasions where I’ve been away and lost my strip of pills it’s proven that they defiantly work..... for a very long weekend of 5 days in March last year it gradually worsened and also continued to be bad for a few days until the pills took affect again

It began for me in September 2018, I went to the doctor the following January and after all the tests went onto tablets in September 2019

I can stop taking them in ‘summer’ and managed to do without them for most of July & August 2019

I don’t like wearing gloves, but I clearly have to. So I have a lot of ‘glove liners’ and wear one on the hand if going through a temperature change, or when going into the freezer I use my other hand and might pop my bad hand into my armpit

For winter it has to be full on gloves, and probably with the liner as well

Gloves with silver thread are great, and they work with touch screens

My finger is triggered by the cold, a change in temperature (eg going into a shaded area on a sunny day) or from slight touch.
It’s probably the nerve element for touch as gently brushing something causes pain but holding something doesn’t
Sometimes I’ll just have spasms for no apparent reason

The pain is mostly sudden, and bad to severe (on occasion it’s the worst pain I have experienced), without tablets the basic pain equates to the higher levels of pain with tablets

Those pills are gold for me and I learned about them on here. My raynauds is quite severe unfortunately and I might ask for a thorough investigation. Until recently I used to absolutely dread the winter and spring months coming, it's horrendous! Thermal tights from M&S help me... pricy at £15 a pair though. I might actually be able to wear a t shirt when most people can this season but I'm not sure because I haven't been on them long enough. Even in a hot summer, my core body can be hot or a decent temp and my hands and feet morgue cold! 😱 It's a horrible condition.
Whatflavourjellybabyisnice · 15/04/2021 09:47

OP, you can start very low on the Nifedipine to see.

Whenasuitcasejustwontdo · 15/04/2021 09:48

I have Raynauds and have tried silver gloves and Turtle Doves. The silver gloves didn't do any more than normal ones, however I didn't spend much on them so perhaps they had a little amount of the magic thread in them! Turtle Doves have been the best and I wear them whilst eating as even using cutlery sets off the seizing.

romdowa · 15/04/2021 09:50

When my hands get very bad with it, I use compression gloves . A rheumatologist reccomended them to me years ago and I find that they really help. I cant have the medications because I've low blood pressure anyway and these gloves have saved me many a winter.

EvilPea · 15/04/2021 09:59

I’m another one whose gp said I don’t have it without actually looking.
I’m a text book case, mine goes with anxiety or just not being warm. My toes also go blue so that’s an interesting one!

Things that help,
Lemon and ginger tea - dont underestimate it. It’s magic
Gloves and socks have to be put on warm so you don’t insulate the cold in.
I’ve had a heated steering wheel (it was a corsa) but I’ve found a heated seat and swapping hands under my bum more effective as it gets hotter

Original poster
WhereAreWeNow · 15/04/2021 10:08

@Whatflavourjellybabyisnice yes I'm the same. My core can be quite warm in the summer but my hands and feet are still icy cold. It is horrible. Sadly I think DD has inherited it too Sad

OP posts:
Blimeyoreilly2020 · 15/04/2021 11:27

@Tommika - the heated steering wheels are standard in lots of cars now, just press a button and on it comes (just like heated seats!). Genuinely have mine on ALL the time unless the car’s been in direct sunlight and the wheel is already hot. I’ve been known to leave the side of the sports pitch in winter for a quick re heat in the car too!

Tommika · 15/04/2021 11:35

[quote Blimeyoreilly2020]@Tommika - the heated steering wheels are standard in lots of cars now, just press a button and on it comes (just like heated seats!). Genuinely have mine on ALL the time unless the car’s been in direct sunlight and the wheel is already hot. I’ve been known to leave the side of the sports pitch in winter for a quick re heat in the car too![/quote]
Sadly I’ve dipped out.
(I feel like my current car is a slight downgrade due to having had heated seats in my last car but not this one, and now I know that I’ve missed out on a heated steering wheel)

I’ll keep my eyes open for the add on heated covers. I don’t think they will suit me as all the pictures look like they need to be plugged in to pre-heat due to being an add on

But the idea has grabbed my attention
I always thought of heated seats as a gimmick luxury until I had them - great for sore backs, cold days, and keeping takeaways warm on the passenger seat

DelurkingAJ · 15/04/2021 11:39

One of my family ended up at a consultant who recommended Magnesium and Cod Liver Oil. It runs in our family too...I’m the one wearing gloves outside from September to May and the fluffy bed socks too. But not a bad case by any means.

JustDanceAddict · 15/04/2021 13:30

There’s loads you can do. Most important is to keep your core warm so the blood doesn’t pool round the organs.
Then try not to go from warm to colder area quickly
Use hand warmers
You can take medication but I didn’t like it so haven’t for years
Get very warm, thermal gloves - mittens are supposed to be better.
The worst for me is going from a warm building to outside which is unavoidable sometimes.,