Hi all. I am a 26 year old female, who has always had noticeable hyper extension of my elbows, my toes and my neck. With a lot of research, I’ve reached this diagnosis. My primary care provider scratched his head when I suggested this diagnosis and my symptoms, so I’m coming to Reddit. I’ve heard a lot about ehlers danlos and raynauds, and my symptoms of severely cold toes and discoloration (I’m diagnosed with ADHD and have been prescribed 30 mg vyvanse which triggers it without fail) led me to believe I have all of the above. My discoloration has occurred since I was a child, which was always triggered by cold temps and led to my legs having patchy purple patterns and pale toes. It worsened in severity when I became pregnant at 20 and felt better after giving birth. But I noticed I had multiple bruises on my legs that occurred without trauma, and would eventually heal after about 1-2 weeks. The bruising also occurred when I began working out and running, which would begin to tamper off after about a month of consistent exercise. With my doctor waving me off with a non existent worry, I’m curious if anyone with this also has bruising? They appear after physical activity and sometimes have a sore bump underneath. I consistently have cold feet, and have veins in my arms and feet that protrude with adequate blood flow. (For context my dad also has obvious symptoms of ehlers danlos, but never was diagnosed) Thank you all, sincerely from a user with health anxiety that is very confused.

What do you think? Is this Raynauds? Quick context: positive ANA, positive scl-70, hair loss, exhausted, female, age 46. 🙏 thank you!

Looking for some not too expensive options for indoor mittens to wear at home when relaxing to keep fingers warm. Price range under $30 would be best. Also preferably not itchy because of sensitive skin and hives. Thanks!

For those with raynauds and constantly red hands, do they temporarily return to normal if you hold your hand above your head for 30 seconds?

2 weeks ago I woke up feeling light headed and slightly numb in the arms and hands.

These symptoms dissapeared but ever since my hands and arms seem to lose circulation very easily. Eg when raising above my head, or lying on my side, or even holding my phone for too long

Much more sensitive to cold than I ever used to be, with cold sensitivity especially on my hands and forearms and fingertips

Feels like hands are swelling when lying down, therefore sleep has been a struggle. Upon waking hands are slightly swollen, and feel a slight loss of sensation, but no numbness or tingling, often very clammy.

Symptoms are not getting worse but ongoing throughout everyday…

All blood tests are normal, dr suggested raynauds but I am not convinced, seeing a nerve specialist in a few weeks.

Any thoughts appreciated!

This started happening in my early 20's. Happens when I'm exposed to cold air, or a sudden drop in temp around me. My hands get like this too, change colors, tingling and numb. As soon as I warm up everything is back to normal.

When I was 17, I developed persistently icy cold, VERY dark purple toes and was taken to see a GP. He said it wasn’t a big deal, ran some tests, and told me not to worry about it. I also recall everyone always telling me I had the coldest hands they’d ever felt in their life. A few years later, I learned about Raynaud’s and said, “Oh! So that’s what it’s called!”

I’m now 33 and towards the end of January, I developed bouts of hot, red burning hands. It became more and more frequent. I originally thought it was something called “Erythromelagia”, but have since realized it’s the “warming phase” of Raynaud’s. My hands go icy cold (not numb) for hours and then become very hot and red for a long time. Last week, I had my first yellow-white finger. My dark purple toes will now go hot and red when they warm up as well.

It appears that I’m developing Scleroderma (constant Raynaud’s, hand telangiectasias, nailfold capillary changes, had a negative ANA 6 weeks ago that is now positive for a homogenous pattern). Now, I fear that the dark purple icy cold toes were never really Raynaud’s at all which would mean I’m probably developing diffuse Scleroderma as opposed to limited.

Does anyone know if Raynaud’s can be monophasic? What else could cause dark purple toes that return each winter in a young woman?

I have a theory that raynauds reduces one’s ability to float. We all know that raynauds causes arteries to constrict when cold. Our bodies have so many arteries, I think this unfortunately also makes our muscles tense up in the process. But we need our muscles relaxed to float!

I can’t float. Not even a little. Not even in the ocean where the salinity is supposedly so high ANYONE can float. I travel a lot, and have tried dozens of times. I can swim from point A to B like a fish, but once I stop I will sink regardless of how relaxed I am. I can’t even stay afloat while doggy paddling.

I’m always cold in water, whether it’s the ocean or a pool. Only hot tubs feel good. I think that coldness is making my body react in such a way that I simply can’t float. I would need a deep pool with hot water to test this theory, but I’ve never even heard of such a thing.

Anyone else have problems staying afloat while cold? I did a google search and no one has ever asked/addressed this.

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I’m a teenager, and my fingers and toes usually get white when it’s a bit cold and the air humidity is high, my hands also frequently show signs of the mottliness.

For some reason, after like 9pm, my symptoms go away and my hands are pretty warm until I go to bed. When I wake up, they are very warm and powerful, however once I get up and start moving, the blood goes away. What is happening?

Hi! I’m a 24F I’ve been diagnosed with raynauds for about two years now and recently i’ve been dealing with some health problems. over a week ago i had a hemorrhagic ovarian cyst rupture which caused internal bleeding. i was admitted to a hospital bc of how low and fast my hemoglobin was dropping but then 8 hours later was discharged w nothing other than this diagnosis, strong ibuprofen and being told to follow up with my OBGYN as my primary care doesn’t handle things like this. but also the OBGYN can’t get me in until next wednesday and i started my girly period of the month which means im just losing more blood. since this began my blood counts like my hemoglobin, hematocrit, iron, and red blood cells have been low, not critically low just a low where we’re monitoring them twice a week. i’ve been diagnosed with iron deficiency anemia since i was 16 and take iron supplements every other month (if i take them for too long it causes stomach pains so this was approved by my primary care doctor). so i’m pretty used to being able to tell when my counts are low in that sense but this feels a lot different. i’m v pale, my raynauds is extremely intense to where i’m constantly wearing layers of clothing and using those little hand and feet pocket warmers, i get lightheaded just from standing and feel my heart begin racing, and am extremely fatigued. i bought a pulse ox and read all the reviews of it, good and bad. it keeps saying my oxygen saturation is around 83% and that my heart rate is 170 bpm, and as a nursing student i know that’s very bad. but then it’ll stop reading bc my fingers are too cold so i don’t even know if it’s accurate. i’ve tried warming them up but it only stays like that for a second so my device doesn’t even have time to measure. i went to my primary care today and the NP i see put two pulse ox’s on me both having completely opposite readings. she tried warming up my fingers and toes too and it still came up funky.

long story short, im wondering if anyone has tips, tricks, or advice to getting a pulse ox to read accurately on their fingers or if they have another way of checking. i know how to take my pulse manually so ill double check it but the main concern is making sure my o2 is accurate. so if anyone has suggestions to try plz let me know.

and just as a disclaimer im checking in w my doctors consistently. i used to work at the office too so my NP and i text updates to each other so im not asking for medical advice about my condition. i know these are v serious symptoms that should only be advised w health care workers

I’m not diagnosed but have been diagnosed with Fibromyalgia, Central Sensitivity (also ASD.) I seem to have frequent symptoms of Raynauds, my hands turn bright red/purple/grey and my nail beds turn pale. Same for my feet sometimes. Sometimes my finger tips get pale and the veins in my arms bulge like a body builder. I get very cold hands that will not warm up sometimes, even with a heating pad wrapped around them. I noticed no matter how large my socks are they leave dents around my ankles. I experience livedo reticularis frequently, sometimes if it is too frequent I’ll get an actual rash in the vein pattern. I am prone to vertigo and my neurologist believes I have POTS, but due to not wanting to treat it aside from PT I didn’t bother getting the table test done. I can’t have my arms above my head for very long or I feel like I’m going to black out. Also I get red and pale in the face, almost like a lupus rash but it happens when I am too cold, too hot, stand up or sit abruptly, or if I am stressed/upset. Generally my BP when taken at the clinic, is in range. Sometimes it’s low but they just take it again and say it’s fine and in range.

I’m trying to identify if this odd experience is a symptom of Raynauds, part of my central nervous system disorder or maybe it’s just my hyped up senses. But I will feel as if I stepped on a damp towel, like the bottom of my feet/socks are wet. It feels convincing enough that I check to see if my socks are wet.

That sounds silly to some, but I have pets, so I don’t underestimate the possibility that I have stepped in some splashed water from their bowls or something. I also experience the sensation when I’m outside and have shoes on. Ultimately I’ll check and my socks and feet are dry.

Sorry for the lengthy post, just trying to sort out if this is how my body is processing sensations or if this is what my body is actually feeling due to something physically wrong with it. It seems too related to blood pressure to be an autism sensory experience, and being that it interrupts my day frequently I am hoping to identify the source.

Does anyone else have any experience with chilblain scars? I can't seem to find any page online that deals with the scarring and my toes are so covered in big red spots from years (!) of chilblains and it makes me so insecure I hate it! I'm 23F, had my first Raynauds when I was 6 or so and have had ever since, though that is the minor of the two. My problem with chilblains is so bad. Every single year, and not even "in cold weather" like is supposedly what provoked them but for me just slightly colder than around 18 degrees Celsius is enough to still have them. The past two years have absolutely been the worse, starting no later than September and we'll, never really going. I suppose the itching and irritation does die down but it's hard to know because they are sore and are scarred well into summer (ie they never really go...). It's also worth noting I do NOT tend to itch them no matter how irritating they get, so the scarring is nothing to do with itching. Sometimes I have the scarring come back the following year before I actually get the chilblains themselves (if that makes any sense). Anyway, I'm absolutely sick of chilblains but what's even SUCKIER is that the painful scars stick with me the whole summer, so for me this isn't even a winter condition. Anyone out there have the same ?? ANYONE have any advice for scarring ?? I'm desperate :(

Also quick aside, I have been so good prevention wise this winter. I have worn thick warm socks the whole time, heattech layers etc, have physically felt like I have conquered feeling cold so why why why do I still have such bad chilblains. I feel defeated.

I was recently diagnosed with Raynaud's after 2 of my fingers started turning blue, have a long history of autoimmune disease. We're getting ready to open our pool in our yard, saltwater pool, in Virginia, USA. I was wondering if anyone had any suggestions for gloves that could be worn to help keep my hands warm? Amazon has some, but reviews are mixed, and I'd prefer to hear from some people that know what I'm talking about. I don't need to hear "oh it's summer, you don't need gloves"... GTFO you do NOT understand what it feels like...

Thanks!

The weather has turned warm here but I've been experiencing tingling in my left arm, palm and fingers for days that's just kind of ... not going away? It is more painful if I straighten my arm. I tried taking ibuprofen (in case of an inflamed nerve) and nothing. Nothing seems to relieve it.

This sucks. I'm not sure what to do. My friend is freaking out about it and it's not helping

I have had Raynauds especially in my feet for over a decade. My feet are just always cold until summer comes around and then they get hot and BURN. I have noticed flares after a shower especially in the Winter, but I had been avoiding sitting at the dinner table for quite some time now and I finally realized it’s because my feet get so ice cold and purple from it. Does anyone else deal with this?

Usually my triggers are severe temperature changes, stress, beta blockers, or just plain being cold already. I hadn’t really heard of just sitting at a table causing it.