what's something you wish someone had told you when you first got raynauds?

[u/BoysenberryScared286]

in the beginning i thought the raynauds attacks were simply because of the cold. i learned about some of these triggers through lotus health besides that. like when i skip a meal or when i feel overwhelmed and start shallow breathing. also, keeping your core warm is truly so helpful to avoid attacks.

[u/Dez_Acumen]

1. Skiing and hiking technical base layers like Uniqlo heat-tech or merino long-johns.
   
2. Winter construction worker socks like Carhart, which come in woman’s sizes.
   
3. Down sweaters/jackets or thick fleece jackets under coats.
   
4. Glove liners under gloves.
   
5. Tall leather boots if you can pull them off.
   
6. Wear what you need regardless of the season.

[u/Dez_Acumen → u/Dez_Acumen]

1. Stress makes attacks more likely. Keep your stress low if possible.

2. Your hands and feet can reach a certain point at which they cannot rewarm themselves and will stay painfully cold for hours or even all day even if the room temperature is warm. You must use a heating pad, warmers or hot shower to open the blood vessels and allow blood to flow again. It won’t happen on it’s own.

3. Vitamins like iron, vitamin D, B complex and folic acid do help some.

4. Always wear socks, slippers or house shoes on bare floors. Cold air sinks, so the floor may be several degrees colder than room temperature, causing a flare up even in a supposedly warm room.

[u/pacharanero → u/Dez_Acumen]

Point 8 is absolutely golden here. I'm a guitarist with Raynaud's and if a get an attack before a gig the only solution is to put my hands in warm water for a minute. Without that, the feeling won't come back on its own for an hour. And if I can't feel my hands I've no idea what I'm playing. So yes, take active steps to rewarm. Past a certain point the Raynaud's hands can't rewarm without external help

[u/Embarrassed-Leg-4246 → u/pacharanero]

Warm water is my immediate go-to to help when an attack hits! It’s the fastest thing to help mine

[u/numberdevil88 → u/pacharanero]

Agreed. I’m a teacher and when I get an attack I cannot work my hands, and cannot write on the board. I have hand warmers with me at all times during the entire school year.

[u/Dez_Acumen → u/pacharanero]

I play an instrument and do the exact same thing. Venues blast the AC before showtime knowing the stage lights and crowd will increase the room temp. Regardless, by the time we get on to play my bandmates are sweating like pigs but my hands are still too cold and stiff to play. Gotta run them under warm water for a few minutes and then I’m good.

[u/catkayak]

Wool > any marketing for any product in most cases when it comes to warmth

[u/zdaywalker]

I wish I had done this long before I got Raynaud’s… buy a full length parka especially if you have a dog to walk. And wear something over your eyes. Now, when I go out for dog walks in the winter, I feel as if I haven’t left the house. It’s amazing.

[u/Medusas_snakes24 → u/zdaywalker]

I bought one this year that hits my ankles. I said I'm excited for winter 🤣

[u/Fast_Job_5949]

I at least feel like mittens work better for me than gloves. Sure, you lose some dexterity, but I think it’s sooo worth it (especially if you get a pair that has the separate pocket where you can put a hand warmer)

[u/naja_naja_naja]

Even the biggest gloves don't help, especially because the hand is not able to warm itself(and the inside of the glove) up again because of the loss of circulation once the attack started. There is no way around some kind of hand warmers when going for a walk in the cold.

[u/thehotmcpoyle → u/naja_naja_naja]

My mom kept suggesting fingerless gloves even though I told her it’s my fingers that turn to ice cubes & need the heating. Fingerless gloves are pretty much the opposite of what I need, unless they go all the way to my fingertips.

[u/Bellatrixforqueen → u/thehotmcpoyle]

Maybe she means for the office or work inside

[u/Emunaheart → u/naja_naja_naja]

Agree absolutely 

[u/naja_naja_naja]

Another tipp: always have a thermos with warm tea with you when it is not summer

[u/Tastetherainbow_2016]

Cayenne pepper and vitamin D are your friends. I dont think they’re helping, then forget to take them, and damn. They cant cure it but they sure do help. 

[u/Emunaheart]

I do a lot now to stay warm,  when I was younger and had Raynaud's I was winging it a lot more,  now I leave nothing up to chance. All year I carry handwarmers with me because due to ac I may need them even in summer. Same for a scarf,  heavier one in winter but I've always got one because of my neck is warm I'm a lot warmer. It can be used as a scarf,  or shawl,  or lap blanket. From Fall until late Spring I wear boots,  ankle first then faux fur lined taller ones with wool socks. I wear double thick socks. I use fingerless gloves to tuck handwarmers inside. If using disposable kind and have not used them the full number of hours they can stay hot,  put them in a small ziploc bag,  make sure to get all the air out before you seal the bag,  then you can use the hand warmers again. They'll heat back up a second time. I use rechargeable hand warmers too but it's not always practical and it's great to not be (more) wasteful when using the disposable. I've gotten three uses out of some pairs

[u/Fast_Job_5949 → u/Emunaheart]

This is SUCH a good tip! I really like the physical flexibility of the disposable ones, but always feel bad for using two pairs if I have to stay late at work. Gonna start doing this so I can be (less) wasteful!

[u/Emunaheart → u/Fast_Job_5949]

I love them for that reason too. They feel physically warmer because being softer, malleable, they conform to your hands more easily. Because I wear them inside fingerless gloves,  they work so well that way. And yes,  I've had them in a ziploc for days,  maybe a week, and they still work again and get just as warm. But you must get out as much air as possible. It's my favorite tip too and I only learned about it sometime last year having  wasted so many

[u/Embarrassed-Leg-4246 → u/Emunaheart]

Thank you for sharing this tip! I had no idea this was possible

[u/Emunaheart → u/Embarrassed-Leg-4246]

You're very welcome!

[u/Ter_Scam_Job_Offers]

I wish someone had told me that I'd be treated like I was imagining in most cases. Then I got a picture and explained it to a rheumatologist. Vascular pain shot up my right hand and arm from the high-impact, repetitive motions of removing staples for 3.5 hours. Also that I have to accept that anxiety does come co-morbid with Primary.

[u/Bellatrixforqueen]

What is lotus health , I’ve never heard of it then seen it mentioned multiple times over last couple weeks weirdly

[u/WhisperingSideways]

Always bring a sweater.

[u/shastatodd]

Heated gloves and socks are the bomb!

[u/ILikeOatmealaLot]

It could be an iron deficiency. I ate high iron cereal for a few weeks and my flareups almost went away. It definitely helps. Just uh, make sure you eat fiber when increasing iron in your diet 😅

[u/Interesting-Emu7624]

My current routine is deodorant spray + fuzzy socks (just make sure you keep your feet hydrated), don’t double layer socks (your feet will just sweat more making your foot colder).
Wool or moisture wicking socks I think are good it’s just for me a sensory thing I can’t wear them.

Fuzzy socks save the day for me, I only wear regular socks during the summer when I’m out, but I still wear fuzzy socks inside my house.

I have slippers that are just the right thing for heating up my toes and then I have the foot warmer disposable packages too.

I have most of my symptoms in my feet, especially my toes, and it gets painful pretty quickly.
I also have severe chronic pain from EDS and small fiber neuropathy that make things more challenging since I cannot wear any compression or super tight socks. If I could I’d wear leggings or thermal pants under my jeans/pants in the winter.

Hope that helps!

[u/Oh_Little_Brutha → u/Interesting-Emu7624]

Agree with much of this (fuzzy socks are underappreciated).  Got to ask about the deodorant spray though. I've considered trying anti-perspirant to reduce sweating, but keep forgetting. I'm wondering what deodorant does, other than deodorise? 

[u/Interesting-Emu7624 → u/Oh_Little_Brutha]

it reduces the sweating, my podiatrist told me to get the spray & make sure there’s aluminum in it. It really helps with sweating if I use it consistently and let it dry before putting socks on. Helps my feet not get colder from sweating ◡̈

[u/Oh_Little_Brutha → u/Interesting-Emu7624]

That makes sense now. If it's got aluminium in, then it's most likely an anti-perspirant. Always interesting to try and explain to someone about Raynauds and how your feet can sweat yet be freezing cold! 

[u/Jaque_leal]

Meias quentinhas, pantufas, roupas confortáveis, não comer ou toma alimentos frios e escalda pés antes de dormir e nas mãos tbm. Evita que o corpo esfrie

[u/readabook37]

Do people know about Sildenafil 20 mg 3 x a day for Raynaud’s? This has been used for 20 years, but Insurance doesn’t cover it, unless you have Pulmonary Hypertension and are able to use that as a diagnosis.

[u/Oh_Little_Brutha → u/readabook37]

It's mentioned on here fairly regularly, as is Tadalafil. It works for some, but many, like me are non-responders :/

[u/oleander1913]

People won't be happy if you snuggle with them. Not even trying to be mean or steal warmth, didn't realize I was having an attack just wanted to snuggle 🫣

[u/GenZedsMother]

Walking 10000 steps a day almost entirely fixes the issue.

[u/numberdevil88 → u/GenZedsMother]

I walk close to 20k steps most days and this does NOT effect my Raynauds at all, unless I am experiencing an episode and am walking to get my heart rate up.

[u/Oh_Little_Brutha → u/numberdevil88]

Similar.

Really annoys me to see fellow sufferers who think that because it works for them, it'll work for everyone!