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Raynaud's sufferers unite
- Thread starter shima
- Start date
shima
Ski Diva Extraordinaire
When I was in 4th grade I chased my brother out the back door and slammed the hinge on my pinky finger...and kept running. It ripped the nail and skin off the tip and my bone was visible, I had to have a plastic surgeon re-attach it.
Fast forward to when I was 13. My mom was going through menopause and keeping the house cooler than normal to help her hot flashes, and I had my first run in with Raynaud's. My only finger to freeze was that pinky finger, which thoroughly freaked me out. Was diagnosed that week with Raynaud's, later additional fingers and toes would also have the same symptoms...but the first time? Just that finger.
ladyluck
Certified Ski Diva
I have it bad. I am on Norvasc to thin my blood (Norvasc is a drug for hypertension, and I do not have high blood pressure.)I have to wear gloves if it is under 50 degrees. I can't even peel potatoes or wash my hands with cold water. I hate it.
Something I am sure most of you know, but I think should be stressed is to get evaluated by a Rheumatologist or Endocrinologist, because Raynauds can be a symptom of other auto immune diseases,and tests besides blood tests; such as nail fold capillaroscopy can tell the dr. if your blood vessels are permanently damaged or deformed. It gives them a good idea of how progressive the Raynauds is,and also whether or not it may be from an underlying disease.My doctor told me that I MUST wear gloves- because every episode makes it worse and will allow it to happen faster.
Something I am sure most of you know, but I think should be stressed is to get evaluated by a Rheumatologist or Endocrinologist, because Raynauds can be a symptom of other auto immune diseases,and tests besides blood tests; such as nail fold capillaroscopy can tell the dr. if your blood vessels are permanently damaged or deformed. It gives them a good idea of how progressive the Raynauds is,and also whether or not it may be from an underlying disease.My doctor told me that I MUST wear gloves- because every episode makes it worse and will allow it to happen faster.
Runlikeamom
Diva in Training
Me too! Have you figured out any solutions? The pain is excrutiating!
grlacey
Certified Ski Diva
I have it, but not severely. My fingers and toes only get to the red and swollen stage, never the full on blanch. I have frost-bitten toes and fingers several times though, and my hands and feet are always cold.
For east coast cold I invested in a pair of heated glove liners. I wear them inside my warmest mitts. The heat wraps the entire finger. I have worn them in sub-zero conditions a couple of times and they work great. Better than hand warmers because the heat goes right to the finger tip. On warmer days I use the hand warmers though. The heated liners have a pretty bulky cuff.
I have hottronic heaters in my boots. Swear by them!
I heard something very recently that kinda makes sense. If you put the chemical heaters in your ski pant pockets right where the femoral artery goes through, it might help keep your toes warm. A little extra heat boost to the blood? I haven't tried it so I don't know if it really works. Similarly, a heat pack secured under a bra strap where the artery to your arm is would do the same for your fingers.
For east coast cold I invested in a pair of heated glove liners. I wear them inside my warmest mitts. The heat wraps the entire finger. I have worn them in sub-zero conditions a couple of times and they work great. Better than hand warmers because the heat goes right to the finger tip. On warmer days I use the hand warmers though. The heated liners have a pretty bulky cuff.
I have hottronic heaters in my boots. Swear by them!
I heard something very recently that kinda makes sense. If you put the chemical heaters in your ski pant pockets right where the femoral artery goes through, it might help keep your toes warm. A little extra heat boost to the blood? I haven't tried it so I don't know if it really works. Similarly, a heat pack secured under a bra strap where the artery to your arm is would do the same for your fingers.
That would be an interesting experiment. I know I've had many times where my core is super warm and I have to open vents to I don't sweat, but my hands and feet are like ice cubes. I don't quite know where it is that my body decides to cut off circulation, just that it doesn't go to my extremities once my brain decides it's cold out, no matter how warm my core is...
I too have Reynaud's as does my doctor. She is a serious nordic skier and recommended swinging your arm(s) in large circles (as large as you can go) for symptoms in your hands. The centrifical force helps get blood to the extremities. For when I get symptoms in the house I wrap a very warm, wet washcloth around the finger(s). That seems tonspeed up recovery, at least for me.
SquidWeaselYay
Ski Diva Extraordinaire
I've got it too. It is a pain to manage. I find that it even happens during kayaking if the water is cold, even it it is hot outside. The worst is when backpacking in the shoulder season. I have to have the nalgene full of hot water ready to go asap when we make camp.
I got one of those zippo hand warmers to try out, supposedly they burn flame less and you can keep them in a pocket. I'm hoping it will be worth the weight/bulk for camping, and also possibly a alternative to the hand warmer packs for a quick warm up on the lift. But I am scared it will leak lighter fluid or burn a hole in my goretex. Going to ha e to test it on my "bumming around the yard" jacket.
I got one of those zippo hand warmers to try out, supposedly they burn flame less and you can keep them in a pocket. I'm hoping it will be worth the weight/bulk for camping, and also possibly a alternative to the hand warmer packs for a quick warm up on the lift. But I am scared it will leak lighter fluid or burn a hole in my goretex. Going to ha e to test it on my "bumming around the yard" jacket.
I have Reynaud's as well, my biggest trigger is when my wrists are bare and cold wind or rain hits the back of my hands. Spring and fall are the worst, the weather can shift so quickly! I don't get it as often when I'm skiing, but I always keep hand warmers in my gloves.
I avoid caffeine. I've also found that drinking beet juice really helps reduce the frequency and severity of my attacks. Its yucky stuff, but its part of my morning routine whenever I'll be outdoors in cold or variable weather.
I avoid caffeine. I've also found that drinking beet juice really helps reduce the frequency and severity of my attacks. Its yucky stuff, but its part of my morning routine whenever I'll be outdoors in cold or variable weather.
ornatewrasse
Diva in Training
I have Raynaud's disease, too. In the past it has been a real problem. My fingers would get white and be extremely painful at times. I'm also a photographer and it doesn't help matters that I often go on workshops where we go out before sunrise to get the morning light. I mentioned to my doctor how miserable I was when my fingers got cold and painful. He changed my blood pressure medication to a another kind that works differently on the body. Since then, my fingers have not gotten white and painful like they used to do. When skiing, it hasn't been too much of a problem. I usually ski on Mt. Hood in Oregon (Mt. Hood Meadows or sometimes Timberline) where the typical daytime winter temperature is about 28 degrees, almost never below the mid-twenties. When skiing, I always wear mittens and liners.
liquidfeet
Ski Diva Extraordinaire
My fingers and toes get cold and stay cold at every opportunity. I sleep with thick wool socks on almost every night, even in summer, especially if sleeping with air conditioning, and have for years and years. I have down-filled booties that I use when the socks don't do the job. I put the booties on top of the socks. I have a twin bed sized comforter filled with down that I use over just myself at night, as hubby does not get cold ever.
My ski boots have Hotronic toe-warmers installed. The heating element installed on top of the footbed, not under it, so it is in close contact with my toes and ball-of-foot. I put one or two (one on top of the other) boot gloves on top of my boots every day I ski, unless it's 50 degrees outside. Where the flaps of the boot come together down near the toes, I have stuffed putty onto the inside of the shell to fill any gap that might be there. On top of the boot's toe box, on the outside, I have stuck 6 layers of duct tape to cover that intersection of the flaps. The putty and tape work together to keep any wind out of the toe box (finally no wind in there!). My boots are quite snug, so I can't use the chemical toe warmers on top of my socks in the toe area, but back when I had boots that weren't so snug I used those in addition to the Hotronics every day unless it was 50 degrees outside. I ski in New England, where it gets really cold often. Single digits and teens during the day with cloud cover are common.
I am careful to not clamp the boot buckle over the instep very tight or it might cut off circulation to the toes and cause them to be even colder. Because I can't get that buckle very snug, I have to clamp the lower cuff buckle extra tight to keep my heel in place. This issue has always given me problems with boot fit until recently - when I finally got boots that are more closely conformed to the shape of my feet.
I wear down-filled ski mittens, and inside those I put two or three (usually three) chemical hand warmers. One of those warmers gets folded in half and put down inside the thumb. The other two warmers sit loosely at the end of the mitten where my bare fingers can nestle up against them. Some mittens have a pocket for the chemical warmers, but that won't work for me. My fingers continue to be cold unless they touch the warmers. If I wore liners inside the mittens that would keep my fingers away from those chemical heaters, so I don't use liners either. Some mittens come with liners attached to the interior. I've bought those and returned them; my fingers were cold. Any kind of liners would help me only if my fingers generated some heat on their own, but they don't. I've never been able to wear ski gloves.
I've not been diagnosed with Reynaud's because I haven't been evaluated. I may have it. Or maybe I've gotten frostnip in my past which is said to make the injured body parts more susceptible to cold afterwards. I have a very clear memory of having extremely cold toes at a high school football game in the 60s; I had trouble getting my feet out of my boots when I got home because they were so cold. I have many other memories of very cold fingers.
At this point I know how to stay warm when skiing. But maybe it's time to get diagnosed in case there are related issues.
My ski boots have Hotronic toe-warmers installed. The heating element installed on top of the footbed, not under it, so it is in close contact with my toes and ball-of-foot. I put one or two (one on top of the other) boot gloves on top of my boots every day I ski, unless it's 50 degrees outside. Where the flaps of the boot come together down near the toes, I have stuffed putty onto the inside of the shell to fill any gap that might be there. On top of the boot's toe box, on the outside, I have stuck 6 layers of duct tape to cover that intersection of the flaps. The putty and tape work together to keep any wind out of the toe box (finally no wind in there!). My boots are quite snug, so I can't use the chemical toe warmers on top of my socks in the toe area, but back when I had boots that weren't so snug I used those in addition to the Hotronics every day unless it was 50 degrees outside. I ski in New England, where it gets really cold often. Single digits and teens during the day with cloud cover are common.
I am careful to not clamp the boot buckle over the instep very tight or it might cut off circulation to the toes and cause them to be even colder. Because I can't get that buckle very snug, I have to clamp the lower cuff buckle extra tight to keep my heel in place. This issue has always given me problems with boot fit until recently - when I finally got boots that are more closely conformed to the shape of my feet.
I wear down-filled ski mittens, and inside those I put two or three (usually three) chemical hand warmers. One of those warmers gets folded in half and put down inside the thumb. The other two warmers sit loosely at the end of the mitten where my bare fingers can nestle up against them. Some mittens have a pocket for the chemical warmers, but that won't work for me. My fingers continue to be cold unless they touch the warmers. If I wore liners inside the mittens that would keep my fingers away from those chemical heaters, so I don't use liners either. Some mittens come with liners attached to the interior. I've bought those and returned them; my fingers were cold. Any kind of liners would help me only if my fingers generated some heat on their own, but they don't. I've never been able to wear ski gloves.
I've not been diagnosed with Reynaud's because I haven't been evaluated. I may have it. Or maybe I've gotten frostnip in my past which is said to make the injured body parts more susceptible to cold afterwards. I have a very clear memory of having extremely cold toes at a high school football game in the 60s; I had trouble getting my feet out of my boots when I got home because they were so cold. I have many other memories of very cold fingers.
At this point I know how to stay warm when skiing. But maybe it's time to get diagnosed in case there are related issues.
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Christy
Angel Diva
I do that all the time--it works!--and people always ask me what I'm doing. I forget that it looks weird to be walking my dog or standing at the bus stop windmilling my arms.
Wow, beet juice. Talk about the cure being worse than the disease (for me. I loathe beets).
@liquidfeet that is so much worse than anything I experience or I've ever heard of--I'd definitely get checked out.
RhodySkiBum
Ski Diva Extraordinaire
I just read through this entire thread -and yes I aslo have Renaud's!
I was diagnosed 30 yrs ago, when i freaked out my gyn doc. I had an appt in February that year, of course it was cold, and of course i was running late, so I didn't wear gloves. I got there and she thought I was dying because my fingers were all white/even blueish, and ice cold.
LOL - I thought that was completely normal at the time!
It doesn't bother me too much sking - yes, my hands get cold, so I use down mittens and hand warmers, but it actually bothers me more with an abrupt change in temperature. I HATE the freezer section at the grocery store. I also have cold urticaria (basically I can get hives due to cold or change in temperatures) Gym class outside in high school was the worst. So I'd have to go outside in the cool or cold temps in my shorts/t-shirts and get hives and cold, white fingers!
I have learned to manage it for the most part. I know I need to have down mittens (not gloves!) for skiing, wear gloves for driving or running/walking/hiking always, even when it is 40 degrees or more, and goretex sneakers for running or walking on cool days!
Fast forward 30 years, I freaked out my general MD last year. I broke my hand skiing year (see my post about hand wrecker poles!) But I didn't go to the Dr until 2 days later when I got home. Again it was January, but this time I couldn't wear a glove because my hand was so swollen. So the Dr sees me, my hand is swollen, bruised, but freezing cold and my fingers as white as a ghost. He thought I had compartment syndrome (complications form the injury, possible fracture) I had to explain the cold, white fingers is perfectly normal for me :-)
I was diagnosed 30 yrs ago, when i freaked out my gyn doc. I had an appt in February that year, of course it was cold, and of course i was running late, so I didn't wear gloves. I got there and she thought I was dying because my fingers were all white/even blueish, and ice cold.
LOL - I thought that was completely normal at the time!
It doesn't bother me too much sking - yes, my hands get cold, so I use down mittens and hand warmers, but it actually bothers me more with an abrupt change in temperature. I HATE the freezer section at the grocery store. I also have cold urticaria (basically I can get hives due to cold or change in temperatures) Gym class outside in high school was the worst. So I'd have to go outside in the cool or cold temps in my shorts/t-shirts and get hives and cold, white fingers!
I have learned to manage it for the most part. I know I need to have down mittens (not gloves!) for skiing, wear gloves for driving or running/walking/hiking always, even when it is 40 degrees or more, and goretex sneakers for running or walking on cool days!
Fast forward 30 years, I freaked out my general MD last year. I broke my hand skiing year (see my post about hand wrecker poles!) But I didn't go to the Dr until 2 days later when I got home. Again it was January, but this time I couldn't wear a glove because my hand was so swollen. So the Dr sees me, my hand is swollen, bruised, but freezing cold and my fingers as white as a ghost. He thought I had compartment syndrome (complications form the injury, possible fracture) I had to explain the cold, white fingers is perfectly normal for me :-)
lucy
Angel Diva
There's a drawer dedicated to my hand gear... thin liners, thick liners, (the mitts are in the ski bag), windproof gloves for running, other gloves to protect my fingers from the steering wheel (the insanity of holding on to a cold steering wheel while I watch my fingers turn white and numb). I have a spare pair of gloves stuffed in every purse, coat, and both cars. 
Anything to protect my little digits from exposure. I am an OCD buyer of finger protection.
Anything to protect my little digits from exposure. I am an OCD buyer of finger protection. Yep, it's the new normal. Had to laugh.
backpackingmom
Certified Ski Diva
Oh I have it bad!!! Like have to ski down to the lodge and run in and put my hands under warm water - just had to do this a few days ago af Bridger Bowl !
My husband got me a USB hand warmer thing but I have to take my mittens off to use it so seems counter intuitive.
I have severe RA for the past 22 years and it has really affected my hands (think Crypt Keeper hands!) My kids say I could get a job in a Haunted house due to my hands lol -
I wear Icebreaker Merino Liners and Hestra Powder C Mittens - so far it is the best I have come up with.
I feel everyones pain here!
My husband got me a USB hand warmer thing but I have to take my mittens off to use it so seems counter intuitive.
I have severe RA for the past 22 years and it has really affected my hands (think Crypt Keeper hands!) My kids say I could get a job in a Haunted house due to my hands lol -
I wear Icebreaker Merino Liners and Hestra Powder C Mittens - so far it is the best I have come up with.
I feel everyones pain here!
SquidWeaselYay
Ski Diva Extraordinaire
I forgot to mention that I found that layering a thin, silk glove liner UNDER a merino liner and then stuffing your hands into down mittens about 1-2 sizes bigger to accommodate all that bulk (tip: steal your SO's) seemed to work really well in 11 degree temps for me. I looked like I had boxing gloves on, but it helped get me from 2 runs to 4 without needing a warm-up break.
It's good to know that lots of people with Raynauds find that the only solution at some point is extremely hot water. I thought I was the only one who did that.
It's good to know that lots of people with Raynauds find that the only solution at some point is extremely hot water. I thought I was the only one who did that.
backpackingmom
Certified Ski Diva
Oh, I am always putting my hands under hot water! Especially when my fingers turn white then purplish-black - that is when that pins and needles pain starts. I have to avoid ski days where there is a severe wind chill or I am doomed! I will see if I have any silk liners to go under my merino wool liners. Thanks for the tip!
SquidWeaselYay
Ski Diva Extraordinaire
@backpackingmom I got mine from Ebay, you can find some on there for about six bucks. They take a while to arrive from China, but for that price, can't be beat.
artistinsuburbia
Angel Diva
Raynaud's here too. It's typically a secondary autoimmune disorder. I have it under control now that I can't eat gluten, sugar, or caffeine. Although my fingers, toes, and nose are always a few degrees colder than the rest of me. No caffeine really helped to lower the frequency since that is a vasoconstriction drug. But it doesn't eliminate it. Worth the stares when I order my morning coffee decaf though. I find that three things trigger it. the steering wheel is the biggest trigger, so I am a lucky girl and got a car with a heated steering wheel. @ski diva GAME CHANGER. The second is rain. Something about moist chill in the air, my body just freaks out about, so I must wear a coat or extra layers when it rains. The third is being sedentary. The arm exercises above totally works, but so does a cross country ski adventure, jumping jacks, running, actually getting off of the couch/out of the desk chair and moving around, whatever gets the blood moving. I always wear chemical warmers inside my black diamond mittens and I find that glove liners keep my fingers too separate and even more constricted so those are a no for me. I think that you have to work hard to find your own solutions because it is different for everyone.
I had a moderate case of Raynaud's for a few years and then I came up with something that made a HUGE difference in my symptoms.
It occured to me that if Raynauds is an exaggerated vasoconstriction to cold that maybe I could train my body to have a different reaction to cold. Apparently when my body gets cold it senses an emergency, and in an attempt to conserve heat to my core, it shuts down the blood flow to my periphery. This would be great if I was freezing to death alone on a mountain top rather than walking around town.
What if I trained my body that my hands and feet were a source of warmth when my core got cold?
I took a chair outside on a cold night. I was dressed in shorts and a short sleeved shirt. I took buckets of very warm water and sat in the chair with my bare hands and feet submersed in the water. As expected, my body got cold. My fingers originally blanched but they quickly returned to normal because they were in warm water. I stayed outside like this for as long as I could stand it. I read a book to pass the time. Once it got to the point that my fingers weren't blanching while they were in the water, I held off on putting them in the water until the first signs of them blanching, at which time I immediately submersed them. My feet learned that they were supposed to heat up after just a couple of times.
Over a period of a few weeks it got to the point where when I got cold during my everyday activities (not sitting outside in summer clothes on a cold night), my fingers would start to get cold and then I could feel this wonderful increase in blood flow *to* my fingers so that I quickly developed warm and toasty fingers. It felt like someone turned a valve to let the blood flow to my fingers. In fact, my fingers got so warm when I felt cold that I had to step down the thickness of my gloves because my finger would get too sweaty.
I think it is important that while you are trying this that you don't let your fingers get too cold when you can't heat them up because that sets the whole process back a week or so.
This was several years ago that I did this. I occasionally will repeat for a night or two as a "tune up."
I have subsequently read the navy uses a similar method for desensitizing Raynauds symptoms. It has worked, with varying success, with family and friends that have tried it.
Your mileage may vary but what do you have to lose by trying it?
It occured to me that if Raynauds is an exaggerated vasoconstriction to cold that maybe I could train my body to have a different reaction to cold. Apparently when my body gets cold it senses an emergency, and in an attempt to conserve heat to my core, it shuts down the blood flow to my periphery. This would be great if I was freezing to death alone on a mountain top rather than walking around town.
What if I trained my body that my hands and feet were a source of warmth when my core got cold?
I took a chair outside on a cold night. I was dressed in shorts and a short sleeved shirt. I took buckets of very warm water and sat in the chair with my bare hands and feet submersed in the water. As expected, my body got cold. My fingers originally blanched but they quickly returned to normal because they were in warm water. I stayed outside like this for as long as I could stand it. I read a book to pass the time. Once it got to the point that my fingers weren't blanching while they were in the water, I held off on putting them in the water until the first signs of them blanching, at which time I immediately submersed them. My feet learned that they were supposed to heat up after just a couple of times.
Over a period of a few weeks it got to the point where when I got cold during my everyday activities (not sitting outside in summer clothes on a cold night), my fingers would start to get cold and then I could feel this wonderful increase in blood flow *to* my fingers so that I quickly developed warm and toasty fingers. It felt like someone turned a valve to let the blood flow to my fingers. In fact, my fingers got so warm when I felt cold that I had to step down the thickness of my gloves because my finger would get too sweaty.
I think it is important that while you are trying this that you don't let your fingers get too cold when you can't heat them up because that sets the whole process back a week or so.
This was several years ago that I did this. I occasionally will repeat for a night or two as a "tune up."
I have subsequently read the navy uses a similar method for desensitizing Raynauds symptoms. It has worked, with varying success, with family and friends that have tried it.
Your mileage may vary but what do you have to lose by trying it?
