I went to the doctor where I was diagnosed with raynauds based on my positive ANA and high anti scleroderma antibodies. my hands are always freezing to the point where they do get numb and cause me pain but they never turn pure white like a lot of these photos. They may get pale, but never completely white. Do i need to experience that to truly have raynauds?

I started struggling with Raynauds a few years ago when I would get stressed or when running. We are in the midwestern US, and have cold but not terrible winters. I would say I am about four winters into this and every year it gets worse. Last year, I wore new boots that had not broken in yet, and my feet got cold. I learned this was a terrible idea, and I ended up with skin ulcers, which was a trainwreck. Now, I have had to go up a shoe size because I cannot tolerate ANYTHING rubbing anywhere on my feet. I feel like my toes bruise??? But not like normal bruises, if something bumps or pushes on a part of my foot while it is numb, it HURTS for days. Does anyone else experience this? Has anyone found any good solutions specifically for feet? I try my absolute best to always keep them warm (foot warmers, socks, heating pads, etc), but sometimes it's physically impossible. I was thinking maybe PEMF or Redlight therapy? Help!!!

Hi,

I’ve only developed chilblains in my hands and feet in the past 3-4 years or so (I’m 34) along with a lot of other allergy like reactions/inflammation in the body/pain - I have most symptoms of mast cell activation syndrome - MCAS.

It’s interesting… I always have chilblains when I have a cold virus without fail (can manage it usually without getting my hands too cold or warm) and when levels of prostaglandins are high in the body. I’ve recently found out that prostaglandins can cause vasoconstriction.

I don’t think it’s typical Raynauds I have - as I say it’s only been the last few years.

Just thought it was interesting that I’ve finally found out my chilblains are caused by high levels of prostaglandins in the body.

Wondered if anyone else had thoughts on this.

Anyone else receive a Chilblains diagnosis but their trigger is heat not cold?

I acquired Raynaud's in my feet at age 12, and in my hands in my early 30s when I lived in a cool but not freezing city.

At 50 I noticed it was less severe, whilst living in a colder (some snow in the winter) city. It was completely gone by 55. I made no significant lifestyle changes, and began to suspect that it was related to natural hormone changes.

Another friend with Raynaud's reported the same thing. So possibly some hope for premenopausal women. I went paddling in the winter in the Pacific Northwest, my hand plunging into icy water with every stroke. My hands were cold, but pink!

Has anyone else had the Cold Stimulation (ice bucket) test done? Did you find it beneficial in getting answers about your Raynauds? Were your toes healthy afterwards?

I was diagnosed with Raynauds by my Rheumatologist a couple of years ago based on presentation and symptoms.

I definitely have Raynauds in my fingers and toes, and when they turn white, especially my toes, can take up to an hour to warm up and restore blood flow.

The past year, I’ve been having symptoms with my legs, which started in my knees (feeling cold to the bone) and spread to the top of my thigh. My legs are solid purple and ice cold every day, and they blanch when pressed. More recently, which I presume is due to prolonged restricted blood flow, my legs have begun swelling horribly at the end of each day.

My ABI tests, vascular ultrasounds, heart tests, ANA panel, ESR, CRP, and numerous other tests were all normal. Treatments to lower blood pressure to improve blood flow are not an option for me because my blood pressure already trends low.

This really appears to be a vascular problem, but my veins and arteries show no abnormalities and I’m being told that Raynauds would not present in the legs like this and that it would only explain my fingers and toes.

My vascular surgeon is perplexed and suggested it may be CRPS, and although being cold is physically excruciating, it is more of a skin and bone pain, I’ve not had any injuries and apparently it would be unusual to present bilaterally.

Long story short, they’re now recommending a “Cold Stimulation Test”, which is where they’ll place my feet in a bucket of ice for 3 consecutive minutes and then perform an ultrasound to see if my feet basically flatline.

I’m honestly terrified by this because my toes turn white in 85 degrees and take a very long time to warm up. I’m scared because I don’t want to lose any of my toes!

MDMA, also know as Ecstasy, is being used to treat Parkinson's symptoms.

With some of the things I'm dealing with, or have found, I've wondered if MDMA could help with Raynaud's symptoms.

My symptoms showed up after I was hit by a drunk-driver. And after I was diagnosed with PTSD.

There are a lot of things that can cause Raynaud's. Getting in a car accident is one of them.

https://www.nature.com/articles/s41591-023-02565-4

https://physicians.mountsinai.org/news/five-things-to-know-about-mdma-assisted-psychotherapy-for-ptsd

For the past few weeks, my right index finger and thumb have been especially sensitive to cold things, and sometimes it hurts to put pressure on them.

I just went on vacation to a place colder than my home, and while out on a walk my index finger turned a pale white as seen here. My thumb felt fine and looked fine.

I immediately thought I am developing Raynaud's, what do you think?

Anyone have any good recs for ski mittens and gloves? My fingers and toes suffer each season, want to get a really high quality pair of mittens especially this year. I already have some liners! Anyone try the heated ski socks?

I don't suffer from this condition so haven't looked too deeply into this therapy, but may be worth your while to investigate. This looks like it could be game changing drug overall, let's hope there's radical changes to our collective healthcare with the incoming administration.

Hope this might help someone...

"For example, the leading DMSO researcher found that 50% of patients with Raynaud’s syndrome had their symptoms eliminated with DMSO and that thrombophlebitis responds excellently to DMSO and two researchers, using plethysmographic methods, demonstrated objective improvement in peripheral artery insufficiency in a large number of patients receiving topical DMSO."

Does anyone have experience with meals triggering Raynaud's attacks? I have between 30-50 attacks a day that come with temperature changes and food and fluid intake. My hands are either white, red, blue, black or all at once - they are never "normal" color. I've had Raynaud's since I was 6-7 years old, though it has worsened in my 20s. I was diagnosed with systemic scleroderma earlier this year, but my hospital has given up treating my Raynaud's as I have unacceptable side effects from the medication. I don't know what to do next. It's the smallest thing that tricks it🥶

Help! During winter I tend to wake up to the nasty surprise of new or worsened chilblains if my hands have come out of the duvet/covers at night. I tried wearing regular winter gloves to bed but they're too warm!! They keep my hands safe, I suppose, but it's too hot! Which is a more favourable problem but still not great. Does anyone have a particular type of glove that they'd recommend wearing to bed? I've seen the arthritis compression gloves on Amazon (which state they're also good for Raynaud's??), but surely compression will restrict the blood flow? Help, I can't do another winter of swollen, horrible fingers 😭

Also, any tips on how to heal chilblains? For me, the swelling lasts months!

Well this just solidified it for me. I’ve been suspecting a connective tissue disease since my Raynaud’s developed. I have these Petechiae all over my body, dysautonomia, dry mouth, joint pain, neuropathy, and positive ANA.

Dry mouth, dysautonomia, vasculitis, and neuropathy are very indicative of Sjorgen’s so I guess I will be looking into that more.

Already have 3 autoimmune. Fun times.

I broke my foot, I'm supposed to ice it three times each day. When I iced it, it caused a Raynauds attack in my broken foot. It was super painful and took a long time to get sensation/blood flow back because I can't wiggle my toes or massage my foot, and it's super swollen.

Any suggestions on how to ice my foot while avoiding a Raynauds attack?

So I have Raynaud’s and have been experiencing the cold, numbness and pain in my fingers for about a month straight now (symptoms first began 12 years ago when I was pregnant). Currently being tested for lupus. Does this look like an ulcer? Been like this for two weeks and extremely painful.

Hey Reddit!

Recently my mother was diagnosed with scleroderma along with Raynauds disease. I'm 18 years old (so thc or any of the sort is off the table) and am in search for a good gift to help her while battling this horrible disease. She already has some cheap hand warmers that she uses.

Suggestions would be VERY much appreciated!

I’ve always wondered if the development of Raynaud’s in adolescence is a stress response. I have no hard evidence for this - but I noticed I’ve gotten flare ups over the past 15 years in especially stressful times.

I’ve also noticed that as I’ve gotten older, my veins generally tend to “show themselves” more prominently prior to a flare up. They actually almost feel as if they hurt. This got a lot worse after covid.

I have recently been dealing with numbness and tingling in my hands. Then, suddenly, it went away for two days when the tempature went above 70-75ish. Im also getting neurological testing done, but now im wondering if it could have something to do with the cold?

I don't think my hands have color change, however they could have a very subtle one. For the last few hours, they've alternated between being very pale or a light pinkish red. Not extreme like some of the images I've seen. Just a little bit.

I'm wondering what could be causing this? Does anyone know anything that could cause this? Including Raynaud's if anyone thinks that's possible. I'm scheduling a doctors appointment, but it helps if I can go in with specific things to request testing for, cause doctors tend to not be the most helpful.

Hi there,

I had very similar conditions to Raynauds for the past 15 years (I am a 38 male).

Each time winter rolls around in Canada, my feet start to feel frozen, leading to sweating around my body like my internal temperature is off.

I've tried ointments, and creams, drinking more water, and cutting out caffeine, but each day, it is the same thing.

I wake up, shower, get dressed, and feel fine for about 10- 15 minutes, and then the cold sets in (mostly from my feet). It is worse when I leave the house and get to work or some other indoor area. My symptoms typically clear up by 2 pm and I feel normal again for the rest of the day. Each day repeats like this for the entire winter.

I should also add that my feet and toes have never turned blue or white. Just feel freezing cold. Nothing in over 12 years has helped except last year took amlodipine and within 24 hours, I felt amazing! All symptoms, gone. It was heaven.

However, this current year, the meds don't seem to be working like they did last year. I was on 2.5mg and have gone up to 5mg with no success.

Any advice on other meds or options?

I should add that I take an immune suppressant (advagraph 1mg/day) for a liver transplant I had 27 years ago. I don't think the two are related since my symptoms only showed up 15 years ago.