27F, I work at a desk and have my own office space. I have a heater under my desk that I keep on 24/7 while i’m here. Problem is, my raynauds is triggered multiple times a day. I’ve watched my raynauds get worse in the past couple years. When i’m home, i can heat up my feet and hands with warm/hot water. sometimes my nose/lips become affected and that ones even trickier to deal with. But this buildings water isn’t always hot, even when i turn the hot knob. No one else in the building gets as cold as I do.

I’ll go on break to lay on one of the couches in a room and be absolutely freezing. It makes me wonder how anyone else can deal with the temp. I already wear pants and a sweater. My raynauds triggers make me feel so sick sometimes.

What are things I can do/buy to help me with my hands? The heater helps my feet at times but sometimes they still get cold/numb. It’s so annoying. My rheumo left so i’m waiting until Dec for a new one. My cardiologist thinks i have orthostatic hypotension and not actually POTS, which drs have been saying i have for years. Drs use calcium channel blockers to treat raynauds, I cannot take them bc they will lower my blood pressure. I already deal with the blood pressure drop multiple times a day. I’ve actually gotten pretty good at dealing with that. I just squat, sit, stand holding something until it passes.

But i’m so tired of feeling so ill at work from these raynauds triggers. I feel so so cold. My heater is a blessing but it’s not helping me with these triggers. i’m so tired of shivering and feeling so cold all the time.

DOES ANYONE HAVE ANY SUGGESTIONS??

I came back with a positive ana test and my doctor says there's no need to look into it.

Recently I’ve been getting numbness in my hands and feet, every time I’m in a deficit, it is really uncomfortable I got my bloods tested recently and everything came back normal even b12 my doctor don’t know wat it is, I don’t know wat to do from here as it is affecting my life a lot what should I do

I have tried a few dosages of sildenafil but never noticed any warmth in my hands. Still get symptoms also. I have tried up to 50mg once a day. The research literature seems to support much higher doses where necessary so I'm curious.

What dosage do you all find works best for you?

If not sildenafil, which drug?

Thanks in advance.

Ive wondered this for years but I could never find an actual answer for it from people. Ive had raynauds for close to ten years now and something I always struggled with was having to cut my nails, specifically my toes. It’s very hard for myself to do it so I would usually have people in my life do it or go to a salon but I get horrible pain whenever I have to do them. It feels like the tips of my toes are being sliced and stabbed at essentially. It’s probably because the circulation is so intense and sharp that it’s more sensitive but I don’t know if anybody else experiences this. Can anybody relate or is my body just weird for this?

I’ve gotten chilblains off and on for years now, never really realizing what they were until i learned about raynauds. Anyway, they usually came with the colder months and would kinda go away during warmer ones. Not unusual. Lately though I’ve had one that will just NOT LEAVE. it’s not always flaring pain wise, but it has been red and swollen since winter. it also does still randomly flare with the classic pain/itchiness, like as recently as June? Does anyone else deal with this?? Like i said, they used to never be this bad in warmer months and it kinda driving me crazy especially since it feels like a newer change

I can’t take it anymore. The vent in my office blows directly on to my hands and it’s affecting my ability to work at this point. What gloves are you using for the office? My usual thin gloves don’t work bc I need to be able to swipe my track pad, and I can’t do that in most pairs. HELP.

Hello everyone,

I'm not sure if you're familiar with elevating feet, but I do it for other medical reasons. But recently my Raynaud's has made it to where I could only elevate my feet for 15 minutes max before they turn completely white.

I used to do it for longer but now it's become more difficult and strenuous.

I read that it's good and it's bad to do elevate your feet with Raynaud's but I'm not entirely sure.

Hi. I was recently diagnosed with Raynaud's but I've had it for many years. I usually have really cold hands and feet, a finger will go numb in the shower and I can't chop a carrot without it hurting like a S.O.B., and that's it. But within the last few months the tip of my toe (beside my big toe) has hardened. I thought it was a callous so I never mentioned it to my Rheumatologist and my next appt is in six months.

It's yellowish in colour. And it's started to hurt. Even when I bend my toes. That symptom is new.

I have a slew of illnesses including long Covid so I'm used to having random symptoms. But if this is related to Raynaud's I'd like to know.

Also, is there specific stretches or exercises we can do to increase blood flow? I do Pilates and walk a lot. Thanks!

My LDL is 3.43 mmol/L and chol/HDL ratio is 3.56 mmol/L. But my doctor wasn't very concerned and said it isn't very high, when previously he has highlighted my LDL levels after bloods.

I started to get Raynaud's symptoms during the COVID times. I also wonder could vaccination or COVID cause it?

When I get in cold water my finger bones first start to ache then fingers start to lose colour and feel numb.

I am 43f and got raynauds first round like 3-4 years ago. Just hands and feet so far.

I noticed recently that I’ve had nipple morphology changes, when aroused - its darker, smaller areola, slightly dipped nipple with increased sensitivity / slight irritation then the other one / than it used to be. Ive gone to my doctor and am awaiting imaging as of course a possible cause is breast cancer. I had an MRI screening mammo 6 months ago that was clear (family history precaution). My doctor asked me to read up on raynauds of the nipple and see if that sounds like what Im experiencing- a hunch she has given what she saw in her breast examination and given my recent clear MRI.

What I can find to read on it notes a white nipple or tons of pain but thats not been my experience. Curious if anyone here has raynauds of nipple and similar concerns. (Side note: dont worry im not here to find a reason to not be alarmed and ill be doing doing all the testing no matter what is said. ill definitely be getting imaged etc).

I grew up in a coastal city with mild weather (average 22°C) year round, so I never experienced winter or summer. A few years ago I moved to another place where winter is mild (no less than 5°C), and I started having Raynaud's episodes whenever it was slightly chilly, and I have really terrible chilblains during winter. My hands get so swollen until the skin cracks. It's so bad I don't wish it on anyone. I've seen so many posts here, and I noticed that your hands turn white! My hands never turn white, they only turn blue/purple. Does that mean my Raynaud's isn't severe? I have other symptoms of poor circulation, like spider veins in my legs.

Does anyone else have both Raynaud's and chilblains?

Hi lovely people 😊 I’m new to this and hoping for some advice on managing symptoms and what to expect at hospital appointments.

I developed symptoms a few months ago, did a quick google search which said it was a common condition with nothing to worry about. Symptoms got worse and I’m getting white fingers down to the palm on every finger and half my thumb with minimal temperature change. Another google search told me it’s likely secondary due to my age and thumb being affected.

Blood tests showed ANA positive and I’m waiting for Rheumatology referral. I apologise in advance for all the questions but my GP appointment was a quick 10 minutes, no medication prescribed and just said they would refer me. So -

What tests does the Rheumatologist do?
How long to get a secondary diagnosis?
What medication is best?
How do you cope??? This is bad in warm months so I feel like my hands will actually drop off in winter
Anyone have swelling and pain in your hands every morning? Or lost all strength in your hands? At 45 I’ve bought things to open jars, bottles and cans. I drop things constantly and random fiddly jobs are impossible.

For context, 45F and WFH full time. Family history of rheumatoid arthritis. 2 years of general pain in hips and knees on movement but thought I was just getting old 🤣 No other medical conditions and take no medication.

Sorry for the long post. Thank you for any advice you can give 😊

Thought they were meant to go in the mega thread now ?!

Curious if anyone else experiences this.

Most of the time I just get the "normal" Raynaud's attacks of half my fingers and/or toes turning white and going numb. Sometimes, though, it goes beyond that. I get a full body chill and I'll shiver some and then it progresses to losing coordination and my ability to think clearly. It's really, really scary when it happens, especially if I'm alone. It feels like I imagine going into shock from hypothermia would.

It doesn't take much to trigger it and it seems totally random. I did a course of physiotherapy in a warmed pool (still way too cold imo...), and it happened once extremely quickly just from getting out of the pool. I almost collapsed in the change room trying to warm myself back up in the shower.

I think the worst episode was after swimming in the Canadian Atlantic ocean. The water was extremely cold and I knew that I had some Raynaud's going on, but it was really hot outside and I LOVE the ocean and only get to it every few years and so I just ignored the cold and numbness and kept swimming like a doofus. The scary part didn't even happen until I got OUT of the water and was walking to the change room. I started shaking and my mind just went black, and I couldn't move my fingers to be able to get my wet clothes off. I felt like I was going into shock.

I don't even know how to convey how terrifying it actually is. It's not just getting a chill that you can't shake off or shivering because you're too cold. It feels like my body is literally shutting down. It takes every bit of strength and focus to do a small task like "get to the bathtub. Turn it on."

Anyone else?

I quit going to the gym when my raynauds first appeared because I thought I had a workout injury! I want to get back to it, but I’m a little wary! Will lifting weights cause blood flow to leave my fingers and or cause damage? My raynauds is kind of bad and I get pain and indents in my fingers from little things like squeezing my glasses too tight when I pick it up! Are there machines or routines you guys like? is the blood flow from exercise usually strong enough to make this a nonissue?

I notice if I go to sleep and have the electric blanket on my stomach instead of my hands or feet, I don't get as numb at night! It doesn't stay on, or in position so i do wake up numb.. Do u guys deal with this?

Sorry if this is a stupid question. I got a Raynaud's diagnosis last year out of the blue, but I'm questioning it. Namely because, although my hands and feet do turn purple, white, and red in response to temperature (to the point where the first time my GP saw my fingers she said "Oh my god, this is not normal circulation" lol), it doesn't really feel like anything.

I was given this whole information sheet about how I could experience numbness, tingling, and/or pain, but I don't feel any of that. Just cold + a bit stiff/uncoordinated. And really warm/burny, sometimes, when they turn red.

So just wondering if Raynaud's can present like this (perhaps a mild case?) or if I should be looking in another direction.