Hello all,

I (26F) have Raynauds (inherited from my mother) and it's the worst in my toes. I have wear three pairs of socks around the house, and even in summer my feet are still cold.

I am considering trying acupuncture to see if it helps - I am wondering if anyone has any experiences trying acupuncture for their Raynauds? I am worried about investing in it and not seeing any results.

Thank you :)

Went to podiatrist today thinking it was ingrown toenail but he said no likely raynauds cause they also turn blue. But my toe around the nail is like bright red almost like a blister

Hey sub. I'm super close to my niece and she just got diagnosed. We live in a winter wonderland and her symptoms have been pretty bad.

I'm looking for some chic winter gear she can wear. Driving gloves, nice socks (she loathes socks), hats/face masks, good coat recommendations, and anything else that would help boost her spirits.

Also looking for other ways I can support her.

She's also a smart cookie, so any reading material would be appreciated as well. She wants to understand it, how to work with it, how to reduce flares, etc.

(Her parents are immensely supportive, but ya know, takes a village and all.)

Background: 26M in good shape, no circulatory issues since birth.

2019 – A Turning Point

During a vacation in Thailand, I suffered from heatstroke and severe dehydration, requiring IV fluids. A few days after the infusion, I developed phlebitis in the same arm, which later turned into a clot. A phlebologist aspirated the clot, and after several months, a Doppler ultrasound showed that the vein had completely resorbed, with collateral veins taking over circulation.

2020 – Raynaud’s Appears

About a year after the incident, I started experiencing Raynaud’s phenomenon. Initially mild, it affected only one finger on each hand. It didn’t cause pain or discomfort, so I didn’t pay much attention to it.

2024 – Worsening Symptoms

In November, I was laid off from my job, which led to immense stress. Shortly after, my Raynaud’s worsened significantly—now affecting three fingers on one hand. My index and middle fingers on my right hand became permanently cold, and even minor triggers like touching a cold glass or doing pull-ups would set off an episode.

I decided to get tested:

- Initial ANA Screen: Positive (1:50)

- Follow-up Testing: Negative for specific autoantibodies, except for a granular pattern observed at a titer of 1:100.

- Rheumatologist ruled out autoimmune disease and suggested it could be primary Raynaud’s.

A Critical Discovery – Cannabis Arteritis?

Not satisfied with the “primary Raynaud’s” diagnosis, I started researching possible causes and stumbled upon Cannabis Arteritis. That’s when things started clicking:

- I have been using cannabis regularly since 2018.

- In 2024, I was consuming it almost daily as well as nicotine vapes. After my job loss, I became a heavy user.

- I had noticed that smoking weed often made me feel extremely cold.

Then something alarming happened—after an evening of very heavy consumption, I woke up with splinter hemorrhages on my fingernails. That led me to find a study titled: "Raynaud's phenomenon and splinter hemorrhage: an early telltale sign of cannabis arteritis".

Now, I’m almost convinced I’ve found the answer, but there’s a problem—I live in Poland, where recreational cannabis is illegal and medical cannabis has only recently been legalized. Most doctors here have little to no knowledge of cannabis-related vascular conditions.

Looking for Others with Similar Experiences

Has anyone here experienced something similar? Do you know more about cannabis-related vascular issues like Cannabis Arteritis? Any input would be greatly appreciated!

Hello,

I have Raynaud's Syndrome and I broke my pinky toe yesterday, of course, the advice all over the internet is to ice it but I know as soon as I start to I will lose blood flow to my toes (Not to mention how painful it will be to warm them back up if I do ice them). I have it wrapped up and am taking ibuprofen, but my toe is still absolutely throbbing. What should I do?

Currently, I am on Rx to control Raynaud's. Side effects: headaches.
*I understand there might be similar questions as mine. but I am searching for the specifics. *

Could anyone recommend any budget-friendly rechargeable hand gloves? Hand warmers do nothing for my fingers.

TIA.

I’m following up with my primary care provider next week and will request ANA blood test & a referral to a rheumatologist.

I did contact virtual health again last night & the NP diagnosed me with erythromelalgia - which is what a couple of you commented it sounded like.

It seems like I’m a rare case if I do have both. I suspect it’s all secondary to an autoimmune disorder but I appreciate all the comments and I will continue forward in my journey.

I like to go ice fishing with my boyfriend any chance I get but we always end up leaving early because my hands and feet get so cold. I have found any thick rubber boots make it worse because they get cold and stay cold especially when you’re standing directly on ice. I’ve tried putting a boat seat/ life jacket under my feet to limit contact with the ice but still only buys me another 30 minutes maybe.

I see a lot of people talk about heated socks being a game changer but what are the good/ trusted brands and what boots are y’all using???

Hey, maybe this question has been asked before, but do You think that wearing rings worsens the condition? I guess that would make sense, as they could affect the blood circulation and also metal absorbs cold ( I am not sure if this is the right phrase). I really like wearing rings..

My DS has just been diagnosed after a year of waiting for dermatology because the doctor didn't seem convinced.

He has flare ups that are mostly on his feet but occasionally hands too. Atm his toes are purple and very swollen looking and he complains of them burning and being very itchy. He's missing out on after school clubs, swimming etc because of it. We've been given medication for him to take which he's been on for just over a week now but as of yet if anything it's getting worse. Are there any creams that are safe to give him to provide any relief from the discomfort or to stop the swelling ? We've only really been advised to keep warm and wear socks/gloves but I feel he's itching more with socks on all the time because they are rubbing his already irritated skin.

Any help greatly appreciated !

does anyone else with raynaud’s experience burning/tingling lips or around their mouth whenever they’re stressed??

I was diagnosed with Raynauds very young (middle school). I have struggled with the discomfort and difficulties of managing my body temperature for a while now, but over the past 5 years I have noticed the symptoms are worsening. I have chronic low blood pressure so calcium channel blockers are not an option. The symptoms are becoming more aggressive, last longer, and come more often. I am either too cold or too hot probably 75% of the time. I have high pain tolerance as well as self-awareness, and am one of those people that can mentally overcome any minor physical issues, but this is constant and draining to a point where I am severely overwhelmed. I am hoping there might be others that have experienced the same things I do and have found things that work outside heated garmets.

Showers are for the most part miserable, but also one of the only ways I can get my body temp to level out. Currently, being winter, I have to run a space heater on high in the bathroom for at the very least 10-15 minutes with a towel blocking the crack of the door in order to have a chance of not being cold, but if the water isn't scolding, or the showerhead doesn't have a heavy/thick stream, chances are Im still miserable. But then, obviously, if the room is well heated and the water is warm, I get too hot too quick and will end up sweating in the shower.

Winter Outdoors is painstaking because it doesn't matter how hot I am, my fingers and toes will be in excrutiating pain in 10-20 minutes. All my boots are rated at -20 or lower, I wear high-quality merino wool socks and mitten liners, and I will go out to shovel. 5 minutes, I will have to strip my jacket and sometimes my mid-layer because I am so hot, but then will still have to go inside shortly after because my toes and fingers are are at the point where it feels like I smashed them with a hammer. This pain will stay for 15-20 minutes at a level where I cant focus.

Summer Heat I boil from the inside out. It legit feels like there is fire running through my veins and I might explode. Again to the point where I cant focus and have to step away. This can happen at any point and causes complete panic. So much so that I feel like a child that still hasn't learned to control their emotions and feelings. It consumes me.

Indoors I have been indoors all day, drinking hot tea, with the heat on 70 and space heaters in my bathroom and second bedroom and I am been shivering non-stop while working. I even went to work in bed under the covers and I was still cold. Once I start housework, I will be sweating and have to turn off the space heaters and down the central heat.

I am so tired of shivering/feeling like I am going to explode from heat and unfortunately, the doctor I have who was knowledgable in the space retired and I have yet to find anyone where I don't feel like I'm educating them. Anyone have any suggestions?

I have been using heated gloves for 4 years now whenever the temperature drops below 5°C. For my city that means approximately 6 months of the year. I‘m getting tired of the bulkiness and constant need to recharge.

Are there any better technologies nowadays that provide enough warmth in a thin glove?

I was diagnosed with Reynauds at around 12 years old, it's been years now and I still can't figure out if it really is that. When I stand for long enough, my legs get red with white blotches and my heels get really sensitive and kind of hurt to walk on. My hands and feet can't ever keep themselves warm, either. I'm just not sure because I've been reading up on Reynauds and it sounds more random and dependant on the cold than whatever is going on with me.

74° in my room and my nose is often uncomfortably to painfully cold. I’m not sure if I have Raynauds but I thought you guys might have some ideas. Does anything exist to keep it warm?!

I’ve had Raynauds for probably 15 or so years now and over the past 5 it went from just numb and discoloration to excruciating pain when they warm up again. There has got to be gloves out there that can completely help (many I’ve tried don’t fully)

So been dealing with Raynauds for about 11 years. I decided to do some good and donate plasma for the first time three days ago. Long story short by the end of the session I was so cold I needed antifreeze to remove stuff from.. stuff. Three days later. No Raynaud's attacks. Super energetic. Not sure if there is a scientific way to substanciate my results but I will keep you guys in the loop. Strange for sure.

My pinky is extremely swollen and has this bump on the side, this same thing happened to me at the beginning of December to my middle finger and it ended up lasting about a month and bruising before it went away (see post history for those pictures) I’ve never been tested for raynauds or really any autoimmune issues even though they run in my family because all the doctors I’ve spoken too think I got bit by a bug or somehow injured my finger without realizing. Something similar occasionally happens to one of my toes, that’s been happening for years, but not to this extent. I feel like no doctors will take me seriously and just assume I’m too young to have anything wrong with me. I have a bunch of other weird symptoms too but this finger swelling is my main concern because it’s so uncomfortable and on my dominant hand so it makes things difficult. Any help or ideas is greatly appreciated!

I had a flare up this week and could barely sleep with pain and itchiness. I wanted to chop off my toes lol, but remembered I had Lidocaine (Will Perform roll on, from Target - not sure it matters the brand) and squeezed it all over my toes and covered my feet with my socks. Instant relief. I did it for two days and the pain & itchiness is gone. My toes are still a little bit red, but the chilblains seem to have subsided. Not sure if anyone else has found their own “cure” for relief. I haven’t come across anyone else talking about using this, but thought I’d share anyway.

Hope you find relief.

The rest of my body (including my palms) overheats very easily, so wearing thick gloves feels awful, but obviously reynauds so the tips of my fingers get painfully/dangerously cold if i dont. I was wondering if anyone knew of any, just finger gloves i guess? It sounds like it would look daft but i dont know how else to deal with this 😂

I have a zone in the bottom of one toe that feels dead right now? It looks like the skin is flaking off but more importantly feels dead - no other way to describe it. Like to the core, that little circle of toe feels almost uncomfortable. Not painful exactly and not quite numb but like… dead? Looking for similar experience bc I don’t know how to describe this or what this is. I work outdoors in the cold so it’s very possible it’s damaged.

I’m curious to know if anyone experiences this- Both my mom and I have Raynauds and both get random “cysts” in our fingers with seemingly no reason. It’s only ever on our fingers and doesn’t protrude out of the skin. They can be near joints or just in the middle between them. Does anyone know if this can be related to raynauds? It doesn’t happen often, maybe 1-3 times a year but I get 1-3 in a row or at the same time. They do go away with time (about a week or two) but I just find it interesting that it happens to both of us. You can’t really see that they’re there, but you can feel them. If you put too much pressure on them it hurts and you can see a bit of red where they are. They can be itchy and make my finger(s) swell a bit too. It also sometimes happens to my toes. When it happens to my toes they get red and itchy and there is a more obvious small white dot

Any warm, thinner options? My daughter plays outdoor sports, sometimes in the freezing northeast cold. I know they say warm your core as well, but how would she do that? Also, the hand warmers don’t really work and are obviously only warm in one spot. Any help is appreciated.

Hii! I was recently diagnosed with raynauds which makes total sense in hindsight (always 20/20 ain’t it) considering how severe my chilblains get.

I work as a cobbler and therefore have to use my hands for my entire job, there’s lots of details and things to feel with your hands which mean it’s quite tough to wear gloves. Our shop doesn’t have the best heating in the world and it’s often pretty cold. I was wondering if anyone who works in a trade/primarily with their hands has any ideas on how to prevent their symptoms from worsening while working a job that makes wear gloves difficult!

Thank you so much ^____^

I’ve had Raynaud’s for over a year now i’ve had blood tests said that I am HEp-2 ANA positive (homogeneous pattern) with low platelets and anti-dsDNA. ENA and antiphospholipid antibodies were negative. I’m also hypermobile, I’m not sure if that’s has anything to do with it.

I’m waiting for an appointment but it keeps getting cancelled. I don’t have any symptoms of autoimmune diseases, so I’m just wondering what all of this might mean.

Just wanted to share something I thought was interesting. I have pretty bad Raynauds since I was a teenager, have gotten chilblains too past winters. I had a baby in October and have been breastfeeding her, and have not had a single Raynauds attack in a cold Chicago winter. Still going outside a lot, driving in cold weather which used to be triggers. I am guessing the hormones have some sort of protective effect.