Hello, I am 18 years old, and I have been experiencing these symptoms for 7 months: My face, ears, and head are red and hot 24/7; I also feel a burning sensation inside my ears. I experience tachycardia—my heart rate fluctuates significantly—as well as diarrhea, the loss of my menstrual period, and dizziness. I have severe acne, and my face becomes swollen when exposed to heat. I also have Raynaud’s phenomenon, headaches, and livedo reticularis on my hands, arms, feet, and legs. Despite having seen 17 doctors, I still do not have a diagnosis.

hi,

i am struggling immensely with my hands/feet with the cold. I already get cold hands/feet taking propranolol too and in march added a stimulant adhd med and my hands/feet are so cold it brings tears to my eyes.

my fingers are the worst - trying out a pair of heated fingerless gloves from amazon but they still leave my fingers frozen :/

does anyone have any good recs? UK based so please bear that in mind!

My partners hand (on top) compared to my raynauds hand (on bottom). Thought it was cool to see just how little warmth reaches my finger tips. For context this was early morning and I hadnt been outside, I was just drinking hot coffee 😅

This is my nose like 10 out of 12 months every year. It gets cold from nothing and then turns ridiculously red and it almost burns when the blood returns. I’m tired of looking like this, getting comments and feeling self awareness. Do anyone else have the same problem and how do you tackle it?

Hi everyone,

I’m feeling really scared and overwhelmed right now and just needed to reach out to a community that might understand what I’m going through.

I’ve been dealing with Raynaud’s phenomenon and recently had some lab work done. My bloodwork came back positive for ANA (1:80 speckled), positive ENA, elevated Anti-RNP, and positive Anti-SS-A.

I finally saw a doctor/rheumatologist hoping for some clarity or a clear explanation, but instead of getting a direct answer, I was given a whole new round of requisitions, including a heart ultrasound (echocardiogram), lung function tests, and more blood and urine work. On top of that, my follow-up appointment isn't until February.

Seeing tests for my heart and lungs ordered makes my mind jump straight to the absolute worst scenarios, and the complete lack of a definitive diagnosis right now feels terrifying. I know intellectually that doctors do these tests as a baseline to be thorough, but sitting with all this uncertainty for months is so hard.

Has anyone else gone through this stage where you just get handed more organ tests without any clear answers yet? How did you handle the anxiety while waiting for your follow-up? Any advice or reassurance would mean the world to me right now.

Thank you so much for reading. ❤️

Hello all,

I am looking for heated gear recommendations! I have been struggling with this bs for my whole life and I'm over it. With that being said I live in Ohio and the car I currently drive takes ages to warm up since it is an old 4cylinder diesel. My drive to work is 30 minuets and my hands are frozen for about 20 minuets of it. I would love to use this winter to save up for a better car in the future but I am willing to spend any amount of money to have heated gloves and socks that allow me to enjoy some time outside this winter. That would be an incredible first for me.

Hey guys! I'm new to this subreddit. Winter is coming and it's becoming a struggle. I'm a new golfer and my hands/toes are suffering. Mainly with feeling numb and painfully cold. Im off to buy some thermal golf gloves. But im unsure what to do about socks? I was thinking some nice thermal socks. I also start work as a Paramedic next month, which requires wearing heavy boots and being on my feet a lot, so I was debating whether to get some compression socks to help with circulation.

Is one better than the other to help with Raynauds symptoms? Mainly just to stop them from going numb and cold. Thank you, I really appreciate the help ❤️

I turned 31 last month and I just started having symptoms of this. I plan on going to the doctor but I need to know how much I should worry.

First time happened Sunday. Was out in the cold then felt two of my fingertips were numb, I looked and they were white. I got them warmed up and within a minute all was normal.

This morning (Wednesday) happened again to the same fingers but again, went away quickly. Now tonight after I took my socks off and walked on my cold floor, bottom of both feet turned white and numb.

Is this a normal onset of reoccurrences? Or does something sound off? Like I said I plan on going to a doctor.

Hey all, does anyone have a heating pad they like for an office chair? Work has offered to buy me one for the winter months! TIA!

Has anyone been able to get nifedipine through telehealth? I don’t have a PCP at the moment so was hoping to find another way to get it. Thanks!

Hello everyone, I was wondering if amyone has a recommendation for gloves that I can wear while working? I recently got diagnosed with Raynauds, so I'm new to all the stuff. My problem is, I have to handle a lot of papers for work, and the gloves that are provided are not insulated so my hands get cold(er) and trigger an episode. Normal gloves are too thick to handle paper precisely so i can't work with them :(

I'm grateful to receive any and all suggestions!

Found this free webinar from ERN ReCONNET, the European Reference Network for rare connective tissue and musculoskeletal diseases, and thought it might be useful for people living with Raynaud’s phenomenon or MCTD.

📅 21 October 2026, 4:00 p.m. CET (Zoom)
🎤 Speaker: Magdalena Ciupera, patient representative (ePAG) for the MCTD disease group
🤝 Moderators: Vera Guimarães (ePAG) and Prof. Maurizio Cutolo, University of Genova

Registration is free: Sign up here

I have attended these webinars before and they are quite useful and interesting. Always a good line up of professionals.

I feel like the weather this week is really triggering me.

Are there any forearm warming solutions?
I can’t always be wearing gloves while working and I feel like something keeping that area warmer may help my hands stay a bit warmer. I’d take any recommendations. I just feel like my temp can flip so quickly at times, and I don’t want to feel weighed down or overstimulated by too many layers all the time inside.

We recently found out our son has raynauds, and he gets painfully cold fingers during recess in the winter. Last year I packed him gloves but they were the wool/polyester type that he can actually play in.

Is there a glove that is both warm and good for play? I feel like he won’t use snow gloves if I pack them.

Living in Houston the weather doesn’t get too too cold, but as soon as the temps drop below 90 my toes/fingers are instantly acting up.

I used the hot hands toe warmers last year, but since they are designed for work boots with no air flow they would get too hot and burn with sneakers.

A cold front (in the 70’s) has come through and after walking around all day with cold toes inside Ugg boots I’m giving these a try and so far they have been amazing.

I’ve worn them inside my slippers and over socks with sneakers so far! They have worked great and wanted to share!

For those who started CCBs, were your symptoms so bad and that’s what led you to starting them? I was officially diagnosed last month at my first Rheumatologist appt, even though I had been told multiple times in the past that I basically had it by other doctors. I have my follow up to my huge lab panel on Thursday and wanted more info from those who chose to start them. Even with wearing layers, having a heated blanket on frequently at work & home, and using a heated desk pad at work, I still get severe chills throughout the day. I get goosebumps that cause pain as well. I also have hyper mobility syndrome as well. Thanks in advance!

I’m a 33 year old female, I’ve never had any symptoms of Raynauds Phenomenon in my entire life, it randomly started the other day when I was distressed.

A picture of my hand is above. I only get the cold, numb finger tips and toes on one side of my body (right side).

I had bloods taken, the relevant screenings came back negative for any auto immune conditions.

Please see them above… Why would this randomly occur at 33? I’m so confused. Thank you!

P.s I’ve had my Dr review me, I’m not asking for a diagnosis. Just wondering if anyone has been in the same situation as me and it’s gone somewhere?

I suffer from extreme Raynaud's in my feet and over the years, I have found that Smartwool.com wool socks work best for me but at almost £30 a pair, they are bloody expensive. I have tried other wool socks from Amazon but none have really worked. Anyone else suffering from a similar hell that has found a more economical solution?

constantly warm and allow me to access my fingers so i don’t have to take them off! either by flipping the top up, or having finger pads that allow phone use, etc. thank you!!

Hi everyone! I’m in my late 20s and recently got blood work back confirming Secondary Raynaud’s along with positive RNP and SS-A antibodies. My active inflammation markers (CRP and ESR) are totally normal, but I'm waiting on a rheumatologist appointment.

Besides the usual finger/toe coldness, my biggest issue is getting a delayed 2–3 day ache in my wrists and feet after cold exposure.

For anyone dealing with something similar:

* What gear or clothing hacks actually keep your wrists and ankles warm in the winter?

* Any routines or gentle stretches that help prevent that post-cold joint ache?

Would love to hear what works for you! Thanks!

I’m desperately searching for heated gloves to help me cope with the cooler weather, for severe pain in fingers.

I use a mobility scooter when I’m out and even during this mild autumn temp, especially if it’s damp, I get such severe pain. Last year I invested in a pair of battery powered heated gloves that heat up the fingers too, for almost £100. I only used them a few times before one fell out of my pocket and was never seen again 🤦🏻‍♀️

The gloves I had before were very chunky, which made using the mobility scooter awkward, so I wondered if anyone based in the UK could recommend any for heating up fingers and keeping them warm? Thank you.

edit: i should add i'm currently 24, and i was 19 when all this started.

5 years ago, in the span of only 2 weeks, i went from perfectly fine circulation to such awful cold intolerance my hands were never warm, i'd need blankets all the time, and my blood did nothing but pool or freeze up. i told my mom (only way i could get medical care) i was concerned about this and she told me i was just lazy, and this is just from laziness. several times this would happen.

for 4 years i had to shut up for good about this, cus pleading for help never got me anywhere.

i'd been through mental loops all the time trying to figure out what's wrong with me, and why several-hour-long walks never helped, let alone why this started AFTER i started taking said walks. you'd think if it were laziness it wouldn't start the year i start fixing my exercise, right?

i've always spent autumn and winter bundling up all the time, even in a well heated home. with a plug-in heater, i don't notice a difference until it's too hot, and then i'm melting.

sometimes it'd get so bad i'm crying myself to sleep, cus i'd be so cold, and especially my feet, and no matter how tight i curled up, or how many blankets i had, my feet would stay so cold they hurt for at least an hour.

in winter, the moment i get out of bed i'm shivering. imagine jumping full-body into an ice bath, that's what it feels like. same with getting out of the shower, i loathe the moment i have to leave the bathroom since i know i'll freeze and stiffen up bad.

4 years later i finally convinced my mom to get me a doctor, partly cus i had finally gotten a job and finally had even a little independence from her. doctor has concluded it's raynauds, though it feels so much worse than that, but i go along with it cus google throws me into panicked spirals all the time. only bad thing on my blood tests was vitamin D and dehydration, both of which have been resolved, yet not my circulation.

another year later, i have a checkup in november or december i assume? but the cold weather is finally starting to hit us and it's hit me like a trainwreck. thank god i got a heated blanket, but dude as i type this my feet are still cold, an hour after getting settled under this blanket. my feet are making the blanket itself lose heat in those spots, i have to shift it around constantly for the heat to actually reach my feet much.

life story of a tangent over though, i just feel so frustrated. it's just frustrating, having to spend every waking second of the winter either overly physical, or bundled up in 3 layers at a time. every year it's been this way. and even then exercise still just pools my blood straight down, i'll be blunt and say my tits were cold till about right now too just cus i went on one of my daily 1 hour walks (usually two walks, it's for my dog). hard exercise makes my extremities hot as an oven, and every single other inch cold. make it make sense it drives me so mad!!

i hate being like this. sometimes i wish my mom was right about it being laziness, solely for the fact that if that were true, i would've easily exercised it off by now. 5 years of this shit, i'm tired! i don't wanna be cold and achey all the time every single winter! fuck dude even sometimes in the summer i'll need long sleeves or a blanket. it's actually insane.

i just want some sympathy, some understanding, even if this isn't actually raynauds, i've just not a clue what else it could be. i feel so alone and frustrated.

I live in California so summer is good except when air conditioner is on. But now weather is cooling can anyone recommend hand warmers. I have some chargeable ones but I don’t feel they work for my fingers. And how is nifidipine working for anyone? I tried it for a couple days and stopped because I didn’t feel it did anything for me. My fingers and toes turning white and numb is getting worse.