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S/o Raynaud’s


mmasc
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Do you have this, and if so, did you get diagnosed? Is there any reason to get a diagnosis? Do you have other problems that are related?

I’ve pretty much self-diagnosed myself with Raynaud’s, but I’m not sure if there’s a reason to see a doctor?? I had a massage therapist tell me one time that I “didn’t have good circulation”. Not sure what she meant or how she could tell. The only problem I’ve had so far is not being able to get a reading consistently on a pulse ox, and of course, having the finger/toe issue when they get really cold. Mostly, I just try to keep warm so it doesn’t happen.

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Yes, I have Raynauds.  It was diagnosed along with my lupus. I supppse the only point of getting diagnosed is of it gets really bad, the doctor can prescribe meds to “help” manage it. But I’m not having a lot of luck with that at present. I’ve been through several blood pressure lowering medicines, and my next option is Viagra. 😕

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2 minutes ago, AngelaR said:

Yes, I have Raynauds.  It was diagnosed along with my lupus. I supppse the only point of getting diagnosed is of it gets really bad, the doctor can prescribe meds to “help” manage it. But I’m not having a lot of luck with that at present. I’ve been through several blood pressure lowering medicines, and my next option is Viagra. 😕

Thank you for your input. I’m so sorry managing it is not working out for you. I have read that it tends to be worse if it’s secondary. I’m assuming mine is primary, since I’m fine otherwise (as far as I know!). 

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2 minutes ago, MissLemon said:

Following because I have self-diagnosed Reynauds, too. I see my doctor in March and I will mention it then. I have Hashimotos disease, so maybe it's related? Or maybe not? 

Possibly related?? It does seem common to have raynaud’s as a secondary to autoimmune diseases, so it seems possible. (I’m just thinking out loud here—I have no medical training!!)

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I have Raynaud's syndrome and have an official diagonsis. The testing was easy and rather intersesting - tiny blood pressure cuffs on my toes. The doctor said I had quite the case and was concerned for me. 

It was important for me because I have other issues that are part of CREST syndrome. (the "R" is Raynaud's)

I was prescribed a mediciation to take - 3 times what my mom, who also has Raynaud's, was prescribed - but it made me so dizzy that I can't take it. I live in GA so I can combat it with wearing gloves, etc.. I bring a heating pad to work with me and make sure I always have some layer nearby. To be honest, drinking hot tea or a glass of red wine helps so much. 

I have had issues with pulse ox. I have had problems with my computer reading my finger print. I have had issues with being able to hold onto the marker (in a crazy cold classroom; my fingers were blue) or lug nuts  (in Alaska with a flat tire) when my fingers get so cold. I always have gloves that come up high and warm my wrists. 

 

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Just now, mmasc said:

Possibly related?? It does seem common to have raynaud’s as a secondary to autoimmune diseases, so it seems possible.

That's what I have read. I don't know what, if anything, it means though. 

I make sure to stay bundled up more than what seems reasonable for the weather, lol. 

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3 minutes ago, mmasc said:

Possibly related?? It does seem common to have raynaud’s as a secondary to autoimmune diseases, so it seems possible. (I’m just thinking out loud here—I have no medical training!!)

It is related to autoimmune disorders. And there is a strong genetic link. My mom has it, and even one my dad's relatives had an ambutation because of it, so I have it from both sides. My sister is self-diagnosed. Both of my girls seem to have it as well. It does seem to be more female than male. 

I have my heated blanket on now and flannel pajamas; the temperature is set to 70 and my fingers and toes are still blue-ish. 

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5 minutes ago, MissLemon said:

That's what I have read. I don't know what, if anything, it means though. 

I make sure to stay bundled up more than what seems reasonable for the weather, lol. 

Yes, me too! And after living in a very cold climate for the past 3 winters, I finally bought one of these last year. (It’s awesome, btw!)
and wool socks—always wool socks!

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Neither my younger daughter (who has worse Raynaud's than me) nor me can visit dd1 and dsil1's house in the winter because they keep it at 65 or something like that.  It is too cold for both of us.  Both of us (dd2 and me) have autoimmune diseases.  DD2 has had it diagnosed.  I am not sure I have or not- I know I have mentioned it to some of my doctors.

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15 minutes ago, mmasc said:

Yes, me too! And after living in a very cold climate for the past 3 winters, I finally bought one of these last year. (It’s awesome, btw!)
and wool socks—always wool socks!

I have one of those, too. So great! And always get hand warmer packets in my stocking and from everyone. And, I am pretty sure, it is 100% guarantee that your spouse will run exceptionally hot. Our bed look ridiculous with my side having three extra blankets. I bring blankets and large scarves with me everywhere. My in-laws keep their house super cold so I double sock and have even worn gloves to bed, and they live further south than us. 

 

Edited by lmrich
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Unless you're having other problems, it's probably nothing urgent.  But, from what I've learned, it often goes hand-in-hand with other autoimmune symptoms.  My dd has Reynauds (diagnosed)...  That was actually her first symptom, back when she was in high school.  We could deal with that on our own.  Over the years, she developed other mild symptoms ~ some fatigue and sore joints, etc.  She still hasn't been officially diagnosed with anything specific yet, because it's all quite mild, but she does seem to have some of the CREST symptoms.  She also has had a couple of red pin-point sized specks on the ends of her fingertips, which also can be a sign of CREST or scleroderma.  It hasn't progressed to anything else, though she's still in her 20's.  We're just keeping an eye on it.  Doctors have said it could turn into something more, or just kind of slide along as is.  For now, no one is suggesting she do anything about it.

Edited by J-rap
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2 minutes ago, J-rap said:

Unless you're having other problems, it's probably nothing urgent.  But, from what I've learned, it often goes hand-in-hand with other autoimmune symptoms.  My dd has Reynauds...  That was actually her first symptom, back when she was in high school.  We could deal with that on our own.  Over the years, she developed other mild symptoms ~ some fatigue and sore joints, etc.  She still hasn't been officially diagnosed with anything specific yet, because it's all quite mild, but she does seem to have some of the CREST symptoms.  She also has had a couple of red pin-point sized specks on the ends of her fingertips, which also can be a sign of CREST or scleroderma.  It hasn't progressed to anything else, though she's still in her 20's.  We're just keeping an eye on it.  Doctors have said it could turn into something more, or just kind of slide along as is.  For now, no one is suggesting she do anything about it.

CREST is a scary diagonsis. Have you all looked into AIP? It made a huge difference for me. 

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I had what was probably Reynauds in the past, while breastfeeding children #3 & 4, on my nipples.

**Insert screaming noise here.**

It fit the description of what happens to fingers and toes, but in a much more sensitive place. It went away slowly, and it wasn't an issue when nursing my youngest. 

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2 minutes ago, Noreen Claire said:

I had what was probably Reynauds in the past, while breastfeeding children #3 & 4, on my nipples.

**Insert screaming noise here.**

It fit the description of what happens to fingers and toes, but in a much more sensitive place. It went away slowly, and it wasn't an issue when nursing my youngest. 

Yep—I had that, too. I’m sorry you did as well! Unfortunately, it was undiagnosed then too. I did have one lactation consultant with my second ask me if I had Raynaud’s because of the pain I was describing to her, but I remember saying no, I guess not.🤷🏼‍♀️ We lived in a warm climate at the time and I just don’t remember having problems in my toes or fingers back then. But I now know that my bf difficulties were 100% caused from raynaud’s. And yes, ouch ouch ouch. It was horrible. 

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Yes, I have Raynaud's. Originally self-diagnosed (it runs in my family), but later confirmed by a doctor. I use the little heating things which help a lot. I also wear Smartwool socks 9 months of the year (I even sleep in them in the summer), which has made it mostly a non-issue for my toes. Winter is tough. I have found that caffeine makes it worse. I read that this is because caffeine constricts the blood vessels. 

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4 minutes ago, lmrich said:

CREST is a scary diagonsis. Have you all looked into AIP? It made a huge difference for me. 

Just looked that up!  Very interesting.  My dd is constantly structuring her diet to see what helps.  The AIP looks pretty similar to what she's eating now actually, so I wouldn't be surprised if she's familiar with this specific diet.  She also has chronic (almost daily) migraines which also began in high school, which we've been told are more and more considered an autoimmune condition.  (Chronic migraines that is, not just sporadic ones.)   She actually does pretty well overall, though she's on a very strict daily schedule that accommodates good rest, gentle exercise, a very specific diet, etc.   I'm glad your diet has made a big difference for you!  Ever since my dd has been very intentional about how she lives her life, she definitely feels a lot better.  

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My doctor suggested I have it but didn't seem interested in a formal diagnosis, and it is an inconvenience, but I do live in TX, so it's not a huge thing.
I do tend to wear compression/arthritis gloves whenever is it slightly chilly (the ones with one fingers so I can still actually do stuff). I pretty much always wear socks - wool definitely in the winter. I have a pair of wool houseshoes as well. I have the electric handwarmer (Zippo) which helps, and I keep a supply of Hot Hands in my car and bag. If I'm going to be anywhere really cold (again, I'm in TX, so my definition of cold and yours is probably wildly different!), I put a Hot Hand in the toe of each shoe as well. 

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Count me among those who have in due to breastfeeding, although mine seems to be permanent. I developed it while nursing our oldest. It's never gone away, whether I am currently nursing or not. I only have it in my nipples. I hope it never develops in my fingers and toes. I hope to never need meds, as my blood pressure is already of the low side. 

It's only mildly annoying for me while nursing. It's absolutely annoying after showers. 

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I was diagnosed at 18. At the time they were ruling out other things to explain the symptoms, so it helped at the time to determine how serious what I was dealing with was. I was given medication to manage it. The medication, for me, was worse than the symptoms. So, I just self-manage it now. 

IDK if the diagnosis "helps" anything now. Maybe it helps on my doctor visits and they make sure not to give meds that wouldn't exacerbate it? And if I'm having a bad day at work with it I can legit say it's a diagnosed medical condition. 

When I got my diagnosis at 18, I was told I'd probably have RA or lupus by the time I was 35. I'm 35 now and very studiously not Googling symptoms of either, ha.

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I don't have a diagnosis, but I've got it I'm pretty sure. Started when I was pregnant - hormones influence it for me. The toe thing is annoying, I don't generally get it in my fingers, just certain toes. But worst was after giving birth I'd get it in my nippels and with one birth I got it...um...the most sensitive part of the lady bits. Yeah, there. Thankfully although the nipples happened with each baby, that only happened with one birth. And was very brief. The nipples was for months each time. GRR. Was misdiagnosed at thrush the first time. 

My oldest now gets it in his toes as well - also just the middle and ring toe like me. 

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28 minutes ago, mmasc said:

Yep—I had that, too. I’m sorry you did as well! Unfortunately, it was undiagnosed then too. I did have one lactation consultant with my second ask me if I had Raynaud’s because of the pain I was describing to her, but I remember saying no, I guess not.🤷🏼‍♀️ We lived in a warm climate at the time and I just don’t remember having problems in my toes or fingers back then. But I now know that my bf difficulties were 100% caused from raynaud’s. And yes, ouch ouch ouch. It was horrible. 

Ok, when this happened to me I'd never known ANYONE to know of it! I feel a bit better now. I do wonder if it is because we are in a warm climate - not as many chances for it to happen. 

And yes, the pain is excruciating. 

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I am diagnosed, first noticed a problem when I was around 15, was diagnosed by a rheumatologist when I had a lupus scare at age 31.  I did not have lupus (I had 5th disease at the time with a lupus-like reaction) but she thought she'd be seeing me again...

it helps to have the diagnosis when considering migraine medications, and also helps me feel like less of a freak when I can explain I have a medical condition and cannot touch frozen stuff and need a cozy on my iced lattes.  My husband also stopped dead-panning, "my gosh woman, are you dead?!" when I get into bed...which hurt my feelings...!   My oldest daughter thinks she might have it. 

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I think youngest and I have it but aren’t actually diagnosed. For me, it’s the worst when cooking. Prepping food kills my hands. Last night I was making meatballs and it took forever because I kept stopping trying to mix everything up because the pain in my hands was so bad. I even set the meat out prior hoping it wouldn’t be so cold. I have Dh wash produce now because it hurts too much. I have to wear socks and shoes  downstairs all the time because there is no carpet. I’m also unable to take many walks with Dh outside in the winter anymore. Typing this all out makes me think I should talk more with my doctor to see if there’s something I can do. It’s not fun.

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Man, I'm realizing how lucky I am to live where I do! (not something I say much anymore, lol!) 

Mixing meat for meatloaf hurts, and if it is too cool in the house (not COLD but lower than say 74 degrees) my middle toes and ring toe tend to go numb, but oddly not painful. In contrast, if I take a hot bath and submerge my feet in very hot water and then take them out again - like letting my feet float up so big toes are out of the water) my big toes will HURT really badly. For so long I couldn't figure out why my big toes hurt in the bath at first - then it clicked it was the raynauds and it is temperature change, not just cold, that triggers it. 

My husband jokes that I'm like some exotic lizard that can only survive in a 4 degree temperature range. He's not exactly wrong. 

 

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Definitely warm climates help, @ktgrok! I’ve lived in very cold, windy climates and hot climates and there definitely is a huge difference in how many flares I get. During our coldest winter while in our coldest climate, I got it in all 10 fingers at once! It was a first, and last, thankfully. I can’t even remember what I was doing when it happened. And I can relate to the toe out of water thing in the tub too. The big change in temp sparks it. My dh coined the term “dead toes” and “dead fingers” when I first really started getting it bad and often a few years ago. I’d say “Look at my fingers!” And he’d say (in a puzzled way/in all seriousness) “They look like dead fingers”. Now that it’s “normal” for me to have it, he’ll often comment in a lighthearted way that we better warm the car/put on gloves/carry in groceries/whatever so “Mom doesn’t get dead fingers” lol 
Now that I’m typing this out, I really only remember this happening when we actually moved to the very cold climate, even though I’m sure I’ve had it longer due to the breastfeeding thing—bc that’s been over a decade ago!

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I have it and was diagnosed as a teen.  The clue that tipped off the doctor was that my kneecaps turned freakishly blue when even a little chilled....like while wearing a thin little gown during an annual physical in an air conditioned medical building.  I had always assumed everyone got numb fingers and toes when cold until my doctor questioned me.

I don't know that having a diagnosis is helpful other than being on your record in case it is a clue to other problems.  In my case, there has been no relation to anything else so it is just "information."  One thing I have read and tried to be careful about is that it is supposed to get worse the more times you flare.  I live in a very cold climate so this means taking careful prevention measures whenever possible.  It has indeed gotten worse over time and I also flare up when anxious or stressed.

Since I live in a cold climate, in a very old house, it is not possible to keep the heat higher than 65 in the day.  My furnace simply will not do better than that on the coldest days and even if it could, we would go broke.  So, I have had to adapt by wearing layers, wool, slippers, scarves, hats, and even wrist warmers indoors.  I drink tea or hot water all day.  When I leave the house, I make sure my mittens are on before I open the door and have learned to do just about everything with mittened hands so I never have to take them off.  Gloves are not even a thing for me.  Not warm enough.  On the colder days, I add hand warmers to mittens and boots.*  If I will be standing in one place for long periods of time (this is a thing for me as I volunteer and spectate for a winter sport), I bring a square of foam to stand on.  I invest in the highest quality winter outerwear.

*I buy these by the case.  This can get expensive.  Each one should last 8-10 hours and it was frustrating to use them for an hour or two and just toss them.  Then I learned you can stop the reaction to use them later.  I just put them in a ziplock snack bag to stop the reaction.  I can get 3-4 uses out of each which has cut down on the expense and waste....which means I am more likely to use them when I should.  I now have a system where I reuse the same set of bags.  Each is labeled as 1x, 2x, 3x so I know how many times the warmers in the bags have already been used.  I use brand new warmers when I know I will need them for a long period of time and the 3x ones when I just need them for a short period of time.  I keep extra bags in my purse and glove box.

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I was diagnosed by a doctor that was a specialist in the vascular system (don't remember the specific specialty) when I was a very young teen. I was living in AZ, so it took a while to figure it out.  I also have flare ups due to stress, not just cold, so that makes it trickier to diagnose. I was on pills at the time.  I don't remember now what they were, but I didn't find them helpful.

All of my female relatives in Maine have it, the ones with Norwegian ancestry.  My neighbor the ER nurse's mom from Minnesota has it-all Swedish ancestry there. So far, anecdotally, everyone I've met with it has Nordic ancestry. No idea if that's coincidence or if it's genetic in that ethnic group.

There's an increased risk of other issues like miscarriage, stroke, scleroderma, and a few other things if I remember correctly.  When we applied to adopt a Korean baby the application was accepted by the Korean agency but I had to have further exams and submit extra paperwork because it's a red flag on the physicals.

The only medication I'm on now is seasonal, the new hand/foot cream for vascular stimulation, from the specialist pharmacy, which unfortunately removes the lettering on the bottle or I'd tell you what it's called. It helps, as do the gloves I wear when it's cold here in Raleigh, which isn't that often. My the parts of my hands between my thumb and wrist are usually blue this time of year and a couple of toes are painful.

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Oh, I forgot to mention, people with Raynaud's have to be careful about vaso-constrictor medications in many cases.  Mentioning it to your dentist and doctor when they ask about allergy meds is important.  They have to weigh whether or not it's worth it for you in each situation.  Usually there's an alternative med available if vaso-constrictors are a problem.

ETA: I see my internist tomorrow for a check up, and I'll ask him about the name of the cream.  The cream didn't rub off the name of the pharmacy on the label, which is Vios Compounding Pharmacy in Livonia, MI.  They send me regular texts to refill, but I don't need refills as often as other people do because Raleigh isn't that cold for that long that often. The cream helps.

Edited by HS Mom in NC
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I would mention your symptoms to your doctor and discuss it with her to see if you should get it evaluated. My mom's primary care doctor diagnosed her without referring her to a specialist. 

Whether you need the officialy diagnosis or not to advocate for yourself, is another thing. It does help me speak up for myself. In the building where I teach, there are some extremely cold classrooms. I had to flat out say that I can not teach in them as I was having trouble holding on to the white board markers to write on the board. But I think you could also say you have it without the official diagnosis. 

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I had a really awesome doctor when it was at its worst, but I never mentioned it because I (erroneously) thought I couldn’t if I wasn’t having a flare to show her. Now we’ve moved and I don’t have a doctor here yet. But I’m not having problems, and control it pretty well, so I’m good for now. Maybe I’ll mention it at my yearly appt this summer and just see what the doc says. 

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4 hours ago, HS Mom in NC said:

I was diagnosed by a doctor that was a specialist in the vascular system (don't remember the specific specialty) when I was a very young teen. I was living in AZ, so it took a while to figure it out.  I also have flare ups due to stress, not just cold, so that makes it trickier to diagnose. I was on pills at the time.  I don't remember now what they were, but I didn't find them helpful.

All of my female relatives in Maine have it, the ones with Norwegian ancestry.  My neighbor the ER nurse's mom from Minnesota has it-all Swedish ancestry there. So far, anecdotally, everyone I've met with it has Nordic ancestry. No idea if that's coincidence or if it's genetic in that ethnic group.

There's an increased risk of other issues like miscarriage, stroke, scleroderma, and a few other things if I remember correctly.  When we applied to adopt a Korean baby the application was accepted by the Korean agency but I had to have further exams and submit extra paperwork because it's a red flag on the physicals.

The only medication I'm on now is seasonal, the new hand/foot cream for vascular stimulation, from the specialist pharmacy, which unfortunately removes the lettering on the bottle or I'd tell you what it's called. It helps, as do the gloves I wear when it's cold here in Raleigh, which isn't that often. My the parts of my hands between my thumb and wrist are usually blue this time of year and a couple of toes are painful.

Well I am not nordic.  I am Polish ancestry.

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On 1/12/2022 at 6:49 PM, Hen said:

I am diagnosed, first noticed a problem when I was around 15, was diagnosed by a rheumatologist when I had a lupus scare at age 31.  I did not have lupus (I had 5th disease at the time with a lupus-like reaction) but she thought she'd be seeing me again...

it helps to have the diagnosis when considering migraine medications, and also helps me feel like less of a freak when I can explain I have a medical condition and cannot touch frozen stuff and need a cozy on my iced lattes.  My husband also stopped dead-panning, "my gosh woman, are you dead?!" when I get into bed...which hurt my feelings...!   My oldest daughter thinks she might have it. 

Wow, I also have symptoms of reynauds, and also had a lupus-like reaction to fifths disease. That’s so interesting! I also once gave myself chilblains by taking a too-hot shower to try and warm up my white toes. My doctor had never seen a case before (I live in Southern CA) and wasn’t sure what to make of it!

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I have a question. What happens if you try to get into a hot tub? In winter. Outdoors so briefly barefoot in say 40 degree weather. I’m curious about feet specifically. What would that feel like for someone with Raynaud’s?

Edited by popmom
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21 minutes ago, popmom said:

I have a question. What happens if you try to get into a hot tub? In winter. Outdoors so briefly barefoot in say 40 degree weather. I’m curious about feet specifically. What would that feel like for someone with Raynaud’s?

I'm sure that it depends on the person.  For me, my hands are much worse than my feet.  But cold in general I tend to register as "pain". 

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26 minutes ago, Jean in Newcastle said:

I'm sure that it depends on the person.  For me, my hands are much worse than my feet.  But cold in general I tend to register as "pain". 

If you put your cold foot into a hot tub, would it feel better or worse? I wasn’t clear before I think. 
 

Asking because I have a very difficult time getting into hot tubs or even a hot shower. My husband loves to go the the mountains and rent a cabin with an outdoor hot tub. I’m not familiar with Raynaud’s, but I have some symptoms. Probably not the same.

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1 minute ago, popmom said:

If you put your cold foot into a hot tub, would it feel better or worse? 

It would take a while for it to feel better but I don't think that it would feel worse.  I'm basing this on running my hands under hot water.  It feels good but if I take my hands out they will still be cold.  It takes awhile for the circulation to actually get going.  My feet seem to have better circulation. 

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Got it. Everyone else in my family can jump right into a hot tub. They all laugh at me because it’s so painful on my cold feet—I literally have to dip a toe and e a s e myself in. And I’m cringing in pain for the first minute I’m in. Just my feet. And I have notoriously cold feet. Anyway, it just made me curious if any of y’all experienced that.

I don’t think I have Raynaud’s. Honestly didn’t know what it was until this thread.

 

Edited by popmom
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@popmomHot water would make my cold feet feel better. The only time I have pain is when my fingers or toes start warming up, there is a tingling type pain. But definitely not when I first put white toes (or fingers) into hot water. Heat always sounds good with my raynaud’s symptoms!😊

Edited by mmasc
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We have a hot tub in the mountains. I just don't let my feet get freezing before I get in. I take off my boots and socks inside, put down a fuzzy bath mat to walk in and then get in the hot tub. I move a chair next to the hot tub so I can put my robe and towel on it so when I get out I am ready. I used to put my towel and robe in the dryer first to help keep them warm. 

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30 minutes ago, lmrich said:

We have a hot tub in the mountains. I just don't let my feet get freezing before I get in. I take off my boots and socks inside, put down a fuzzy bath mat to walk in and then get in the hot tub. I move a chair next to the hot tub so I can put my robe and towel on it so when I get out I am ready. I used to put my towel and robe in the dryer first to help keep them warm. 

That sounds so good. I think I will be doing that Sunday morning when we either have freezing rain or snow.

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