My Raynaud's is out of control! 🥶

[amoreoamicizia]

I've had Raynaud's phenomenon for a few years now (early forties) but recently it's got significantly worse.

It's in my feet/toes now and, for example, I had a bad "attack" (so to speak) in the supermarket yesterday. That doesn't bode well for the upcoming truly cold weather.

I've asked my GP previously and was told to keep warm. I'm doing my best with all kinds of gloves and merino layers but quite simply nothing is enough.

I'm fearful I will really suffer this winter, last winter was bad enough- what can I do? 😔

I could see a private consultant but what kind would be appropriate? It's horrible and truly affecting my life.

Go back to the gp. There are medications you can try.

Yes, I think it's nifedipine that can be prescribed (a type of BP med)

My Mum and my DD both suffer with it. Gloves on as soon as you wake up (to stop them getting cold in the first instance) Cashmere if possible. Keep wrists covered. 2 or 3 thin layers of socks rather than one thick pair. Hand warmers (battery ones)

Thanks, I know about and have all the devices (hand warmers, merino and silk this and that) but it just isn't enough and it's not practical in everyday life.

E.g. I take off the gloves to use the loo and wash my hands- attack
I take them off to do some washing up- attack
I take them off to put bag of rubbish in the wheelie bin or do anything else outside the house - attack
I take them off to cook - attack

Having a shower, going grocery shopping, walking outside, just being in my house, any of these times I will have an attack.

Even wearing these expensive gloves I get the attacks anyway, as well.

I'm not really sure "attack" is the best word for this but you know what I mean.

Cooking seems to get me every time and I can't work out why because it's...hot.

For me it's because I'm rinsing my hands intermittently but I have to do that, I'm not abandoning hygiene!

I have this too and it's also got a lot worse in my 40s. Mine can be set off by anything, it doesn't even need to be cold although obviously that's a trigger. I have another autoimmune disease which causes weakness in my hands and arms, and the combination of these two means I can barely use my hands at all some days.

Rechargeable hand warmers help, I put them in my pockets and then hands in with gloves on too, but that only helps when you are out for a walk or whatever. I have never really found a solution for the day to to activities you describe.

I am wondering if moving to a warmer country is the long term solution for me. I can't see this getting better as I get older so what does the future hold?

Can I ask a question? DD thinks she had it, but rather than just cold, she reacts to changes. So yes cold, her hands go white, and then puff up. In the shower her feet go red and swollen. She also thinks she may have POTS but as with all things her GP isn't interested in seeing her..... She is only 21 and otherwise fit and well.

P.s. She did have lots of tests privately on her heart, ECG, Electrocardiogram, 7 day monitoring sticky heart thing, all ok. What we think needs checking now is her blood pressure and blood tests ...... Hence GP requirement!

I've been on medication for Raynauds for 30+ years - Nifedipine 10mg three times a day, makes a huge difference.

I’ve had it since childhood and it’s not been too bad the last couple of years, maybe cos I know how to manage it better. Trigger for me is going from warm to cold so leaving a warm house/office to go outside for example (or even warm to cooler room). Weirdly my little finger is worst affected and the agony when it comes ‘back to life’ is excruciating- and it is v sensitive nerve wise - if I knock it it’s awful - makes me feel nauseous. All Raynaud’s related apparently.
Always make sure your core is warm so your blood doesn’t divert from extremities, use hand warmers, wear thermal gloves/socks, take nifedipine if you have to.
It would be a rheumatologist who you’d see. I went years ago and she did a few blood tests to check it wasn’t secondary Reynauds.
A good website is SRUK - very good advice on there.
I have a lot of chronic ailments 🤦‍♀️

My daughter has Down Syndrome and heart problems, not too serious and also has Raynauds. She is mixed race so her hands/feet don’t go white they go purple. The other problem is her hands shake when she is cold (often) Does anyone else have this? Must order her some heated gloves thanks.

Have a google at 'Gloves in a bottle'.
I have no personal experience, but I think it adds another layer, and will withstand gentle hand washing.

My feet go purple and i shake when i get very cold, only a very hot shower fixes it. I had medication but it lowered my blood pressure too much and i felt awful. If symptoms are this bad then you need to be seen further. Medication might really help.

To answer your question should I move somewhere hotter, it will improve but it won't go away. I still have to be careful in the supermarket fridge and freezer section, I can't be barefoot at home when the AC is on, I wear gloves when I take the dog out at 5am in the winter, I can't cut carrots, potatoes etc straight out of the fridge. All this yet it's 35C outside right now!

What age is your daughter, @mumof2many1943? NICE guidelines say to investigate Raynaud's in younger children. I just double checked and it says "Referral is recommended for:
All children aged 12 years or less with features of Raynaud's phenomenon".

This is my hands next to my child's to show the contrast. This is just being in the house.

Look at the Scleroderma & Raynauds website- they have silver gloves. Also there is medication etc but not made much difference.

My feet are horrendous too. I've had it since a teen and as I'm getting into my 30s, it's getting worse. Keep an eye out for ulcers etc.

I dont think it will make much difference, a breeze on a summers day can trigger the smurf look.

•amoreoamicizia• that is a long name🫢
Daughter is in her 30’s but thanks for advice will checkout nice guidelines.She has had it since she was a toddler but no one seemed bothered

Could you have developed something as well as Reynaulds? I have Cold Urticaria; which is an allergy to the cold. If my hands, ears or anything else gets really cold, I immediately get hives then pain and swelling. I can't peel a potato from the fridge because the cold turns my hands immediately red and painful. If I go in the British sea, it immediately sparks etc. Even the cold steering wheel sets it off in the morning.

This developed several years ago after I had shingles. My daughter has Reynaulds, so I know what I have is different to her.

This might sound daft but could you get a big box of disposable plastic gloves to put over your warm gloves while doing jobs like emptying your bin so you don’t have to take your other gloves off. Then it’s only the outer ones that will need disposing of.

My Mum has raynauds and it’s awful, her GP has recently referred her to the hospital so could be worth asking again.

Ugg type sheepskin boots (not synthetic fabrics) really helped with my feet.
I was prescribed isosorbide mononitrate last year for another issue and since taking that the Reynauds is much improved.

I've had it since childhood. I kind of just accept it now however trying to dress and do hair with completely numb fingers is a bit much sometimes. The worst is making packed lunch because the fridge makes it worse. Fumbling about with no feeling. I did try nifedipine as a teen and didn't like it so have just lived with it but am finding it harder and more expensive to keep warm. Maybe I will try again. You could ask your dr and see how you find it

I lived in Cyprus for 10 years. The cooler evenings outside of July and august were problematic as were the supermarkets. Getting out the sea even in summer etc

Yes changes are a huge thing. Not just in temperature but in activity too. Both sudden movement or resting after exertion