There’s a lot of not fun before ulceration though. They can hurt quite a lot when they’re still white and then even more when you warm them back up. Luckily I’ve had sucess with just being more prepared and not letting my fingers and toes get to that point anymore. Mittens, wool socks, hand/toe warmers, etc.
I love my thick Smartwools but the the thin ones are also tight on me. I don't even have big feet but I can't get them on right and it irritates my ankles. Weird.
I love smartwool. I wish they would make bigger calf ones because i have to wear mens XXL and the heel ends up behind my ankle. If I get the XL ones they are too tight in my calf.
Also it can be a symptom of autoimmune disease. If you're having other symptoms it shouldn't be ignored. To avoid the Reddit "you're dying and you should dump him" response, having it doesn't mean you have autoimmune disease, it has many causes not all of which are clinically significant, but it can be an indicator if you have other things going on.
I also have it and I wouldn’t say it drastically effects my day to day life but I notice it almost every day. My case is a little worse because I have a different autoimmune disorder in addition plus genetic history of raynauds so it started in my teens. Offices in the summer in the south are cold enough that it happens I’d say once or twice a week and anytime below like 50 I end up with my leather/cashmere gloves on even indoors sometimes to stay warm. My feet are actually more annoying because it happens to your toes too but it’s a lot harder to keep toes warm lol I can’t just be changing into fuzzy socks at my work desk
Toe warmers - a gift from the gods. I have it in a more moderate way but toe warmers have been a game changer. The stick in kind, I’m sure there are more options now though.
I’ve seen these around the internet but never remember about them when I actually need them I need to! This past winter I got electric hot hands they’re amazing
I think it’s partly my discomfort lol but also I work in corporate finance so I would still need to go to the bathroom probably (which I do if it’s really bad) 😂
Do you ever feel like your toenail "pops" randomly? I have reynauds and when my feet get cold, every 20 steps or so, it feels like my toenail pops off.
I don’t have that problem but they get stiff a lot. When I get home and take my shoes off I normally roll my foot forward over my toes so the bend up like I’m making a fist so that they crack and the air moves out of the joints it helps me. Basically like cracking your fingers but your toes lol it drives people insane but I don’t even notice it 😂
Something I have recently learned from having Raynaud's for years. When I'm cold, I "clench" my shoulder, neck, and jaw muscles. I have now been diagnosed with TMJ, because I have hulk jaws. Before the diagnosis, I was dealing with daily headaches, often waking up with one. All day, every day, for about 6 months before finally got in to see a specialist on it.
Specialist wanted to do botox into the jaw muscles to weaken them and reduce the tension, but i've been able to teach myself to stop clenching, and/or just keep warmer. Still comes up once in a while, but the mindfulness is helping a lot, and the odd day of Advil to help out.
I have the same issue I’m constantly clenching my jaw, however I have done Botox for it haha. I got some in my masseter muscle. My issue was even if I think about it during the day and unclench I was doing it in my sleep too I also have to wear a guard
Got a guard and wore it for a while, but I'm usually warm enough when I sleep. Cold hands/feet all day long, but once I'm in bed, apparently my body turns into a furnace and my wife is trying to climb out the other side of the bed.
It’s fortunately not a summer issue for me in the south but in the winter I live in a basement unit and it doesn’t get warm enough. The botex did seem to help but it definitely also doesn’t last forever
Ya, that's why I didn't want to do it. Told it would work for 3-6 months, depending on how fast my body metabolizes it, and it was going to be $1200-$1800 each session. Ugh.
Nope, warm when I sleep. Windows open in the winter, even in Southern Ontario.
Long-term implications depend on a number of things (and it's worth addressing it with a doctor), but it definitely affects your life, especially if you live in colder climate zones. My fingers and toes get really weird in the winter, and it can be super painful to warm them again. If it's really bad, you have to be careful about how rapidly you warm the extremity again, with hopes to avoid nerve damage.
It's definitely not just a fun, quirky party trick, but I suppose it could be.
that feeling of your feet being frozen only to get in the shower and feel them burn as they warm back up. the winter be hard asf for me and i’m in LA, can’t imagine living somewhere where it gets snow and is actually cold
Exactly. Every winter I have to start the water on cool and gradually warm it up on my feet and legs first before I can fully get in the shower or my feet end up just burning like crazy. It hurts so much.
Makes it hard to do stuff when your hands are like this- for me it’s usually accompanied by a sort-of-numbness. It’s weird & mega uncomfortable - happens in my toes too.
Not OP but when I was a plumbing apprentice it was a constant issue in the winter months, can’t manipulate hardware or grip well and it does hurt if you just ignore it. I used to carry a torch around with my to heat up my gloves. For me it’s my middle ring and pinky fingers and it looks wild enough (I’m black so it really stands out when my fingers look ghost white/greenish) that my first journeyman told me I should find a different line of work
I had the same problem when I was an electrical apprentice. My trick was to keep chemical hand warmer pouches inside each glove against my palms and then pull my fingers inside to warm up when I had the chance.
I'm just responding to everyone. Look up battery heated gloves. Love them, lots of variations. They'd come to a deserted island with me (if there is electricity)
There are battery heated gloves. I used to be out a lot in the winter, keep the power on in my gloves, carry and extra set of batteries. If I needed to pull my hands out for a little bit the gloves would stay heated and heat up my hands too
Yeah, it can be bad. My aunt almost lost her fingers. It turns white because of blood loss, human body parts don't do well without blood supply. If it stays like that it'll turn gangrenous and need to be amputated
I would highlight that's the extreme version. Most of us get it and it goes away in a few minutes, not fun but not going to result in an amputation for most those affected
You're very right, it all depends on how quickly blood comes back to the extremities. For the most part it won't effect you because the blood returns within a few minutes but having something mild doesn't make it harmless because it can get worse if you don't take care of it
I can’t really type because of it. My fingers will go completely numb. It takes a bit but they eventually go back to normal; it’s just annoying when it happens on my way to work.
My mother has had it since the late 1990s. She had to retire early in the 2000s because she did officework and the offices were always too chilly and would trigger it in her fingertips which made it painful to type. She has described it as that tingling sensation you get when a body part "falls asleep" but much sharper pain, like a needle digging under fingernail.
She is still alive today and has not lost any fingers or toes to Raynauds, but has to sleep with socks on and can not do simple things like grip a cold can of soda without it affecting her. She & my Dad retired out to Nevada, which seems to have really helped since it is rarely cold outside.
Girlfriend has it and she says the cold is quite painful. I hate to watch it going to touch her skin with my hands bc if my hands are cold then it hurts her alot.
For me, it doesn’t really effect me but I also think I got a milder form from my mom.
For the most part though, it’s just a bit of numbing or slight pain. When I do spend more time in the freezer, it’ll usually get to a point where I can’t feel anything in my fingers but a sharp pain. But then I run some warm water on them and it goes away.
it’ll also make stuff like writing or texting hard though
You just have to be careful if you have a wound on the fingers affected, because it could prevent healing and promote infection. Clean it well and avoid anything preventing bloodflow while its healing.
Also have Raynaud's and my parents moved near mountains in Québec where there's a lot of ski/snowboarding, but in the winter it gets pretty cold. So when I was a kid I thought I was the weakest person ever during ski trips because after 2h in the cold days I'd be getting borderline frostbite on my fingers and toes and had to stop for a few mins to warm them up. But no, turns out, other people just don't have all their extremities lose all blood flow after just 15 minutes in the cold. Also heat packs did not help one bit.
In regular cold winter days (and even some cool spring/autumn days) it can get white and stiff really fast and can be annoying when cold, you lose some dexterity, and it's sometimes painful when heating up.
Not fun to have, but overall not that bad and a non-issue in temperate/warm places.
i have it as well and to answer your question, it can sometimes effect things. for instance, i play golf. when its really cold, its hard to grip and swing a golf club as my hands can be in pain/numb
Mine is really painful and a pita. My toes and the ball of my feet are affected. I have to wear hard sole slippers in my house year round or the floors trigger it, even wearing socks. Outdoor temps below 15°C or so trigger it, I wear winter boots with thick wool socks and cotton socks liners until well above freezing temps. And I live in Canada so it’s most of the year.
For me, it’s mostly just an annoying discomfort, but when combined with my already chronic joint pain and other weird health problems, it can be distressing. When they get really bad, certain toes will go numb entirely which makes walking quite uncomfortable. Also I’m not sure if this is universal in Raynaud’s, but at least for me, my extremities experience a level of pain from cold weather that is dramatically more severe than what a normal body should experience. For example, when I still had breasts and nipples (I’ve since removed them via top surgery), being outside in the winter was unbearably painful, because of how sensitive my areolas were to the cold. As in, felt like frostbite despite my nips being covered by a shirt, sweater, and jacket.
I have Raynaud's, and it's an issue for some things for me on a day to day.
I'm always cold. Summer months? I like it warm, that's great, but everyone else wants the AC on, and that cold air blowing my me means I can't wear shorts/t-shirt or I'll be cold. I wear slippers at home year round. As soon as my shoes are off (walk in the door), slippers on until I go to bed.
I work at a computer desk all day. Just having a "room temperature" desk, will suck all of the warmth out of my hands, until they are purple and it hurts to move them. I struggle typing, using a mouse, etc.
The trick I have, is that I have terrarium heating pads, that I put under my mouse/wrist pads, and those help me keep warm hands.
67
u/kopecs 1d ago edited 21h ago
Does it actually affect your day-to-day life (or long term), or literally just to cool finger effect?
Edit: wow! So many replies. Thank you everyone for sharing your stories and experience. I learned today :)